When You Make Plan “A”, have a Plan “B”

“It’s stressful to go out or do things but not doing them has its own liabilities.”

When Dealing with a Chronic Illness, Make Sure You Have a Back-up Plan

By: Lydia Neilson

December 9, 2017

I thought I would share with you what I stumbled across. I was looking up information for a friend of mine who plans to start a company, I therefore began researching risk assessment methods for her so that she could plan her moves and avoid as much mistakes wherever possible.

As I started summarizing how to assess risks plan strategies, I noted that like looking at the pitfalls and warning signs of a business venture, our daily lives with a chronic illness pretty much resemble a business venture in the pros and cons of an endeavour.

Keeping that in mind, I decided to apply the same assessment plan to my daily schedule and see how it would stack up. One of the first things I learned about risk management was that you always have to have a contingency plan. I realized I didn’t have one. I had nothing to fall back on if Plan ‘A’ failed. Supposing I went to a friend’s house for a visit, did I have a way to get home if it turns out I became unwell or did I ask the friend in advance that if I became unwell, was there a place I could rest. No wonder I was stressed about going anywhere, I worried about what could happen but had taken no precautions for a back-up plan.

One of the items you address in a risk assessment plan is to identify critical business functions. In our case it would be basic activities of daily living, such as taking a shower, getting dressed, having breakfast. These are critical items and they were not even on my list.So I had toidentify the risks. That of course is obvious. I would say, if I shower, will I have enough energy to get dressed and have breakfast or would it make more sense to eat first so that I won’t be too tired to eat? I thought that was a very good consideration, especially on a bad day. In other words, I needed to prioritize my plans for the day.

By prioritizing I could minimize the impact and maximize the benefits of each action I took. Since our energy is concentrated on both physical and mental, I thought it would be to my benefit to alternate my activities between mental and physical work and that way have a more balanced day.

Next I decided to look at how long I could go before I reached that wall of not being able to go on any longer at whatever I was doing, keeping in mind I didn’t want to reach the crash point.
I discovered that also varies on a daily basis as it depended on first of all how I felt when I got up and if I had appointments I had to go to. If appointments were part of the day, then that day my necessities of the day and the appointment should be my main goal of the day. That’s where risk management comes in again, how to do that and so I must prioritize and minimize a waste of energy on things I cannot afford to do that day because of my priorities.

I now found I had a better understanding of how I could have better control of my day by not only seeing what my priorities were for the day but having a contingency plan, a back-up plan for when I couldn’t fulfill what I planned to do. I have less stress in my day as I don’t have to think about the “what if” of not knowing what I would do if I couldn’t do what I set out to do and or was in a different location.

By helping my friend, I also had a different understanding of how to live my life and be less stressed. I now stay alert of warning signs and the moment I realize that I have to change my plans, I don’t wait and agonize on what to do but am now prepared to deal with it as I have a back-up plan.

Now, when I go out with a friend for a social time, I will discuss with the friend ahead of time what I may have to do if I can’t stay. This way they are not surprised if or when it happens and they are also more understanding because there are no awkward moments to get over.

It is always understood that each person’s life has variables and what may work for me may not work for someone else. However, for me looking at my illness from a different perspective gave me more insight on how I can have better control of ME.

Lydia

Unraveling and Streamlining ME/CFS and FM in the Canadian Health Care system

National ME/FM Action Network

November 4, 2017

To Whom It Will Concern

Unravelling the mystery of the Canadian healthcare system and making the ME/CFS and FM community an active participant in streamlining the vast medical information accurate and up-to-date in the health-care system.

As we all know, each province and territory has its own healthcare system and rules and regulations and how up-to-date it is about any illness is dependent upon the knowledge of those who work with it.

Since the Canadian Government lets each province and territory control its own healthcare, unless we get involved ourselves, nothing will change rapidly to help the ME/FM community.

The Ontario Minister of Health set up a taskforce to study and recommend what needs to be done to aid our community. The first phase of this report by the Task Force is now done and the report released.

Since Ontario is the only province so far to set up such a task force and even if the other provinces and territories follow suit, they would be repeating what has already been done in Ontario and precious time wasted.

Therefore, what if we take this Task Force Report, improve what needs improving and eliminate inaccuracies, we then present our report to all ministers of health in all provinces and territories. Healthcare may be different in each area but the basic fundamentals of ME/CFS and FM should be the same everywhere. The confusion has got to stop.

I have taken the main recommendations of the Task Force Report, and put links for further study at in my report but took away the minute details so that we have a better chance of working with the recommendations.

Setting Up An Investigative Working Group

To assist in this task, if you are able to, it would be great if we get volunteers to go over the recommendations of the Ontario Task Force and made suggestions and recommendations to improve a report we plan to send to all the Health Ministers across Canada. The reasoning behind this is that once the report has been distributed, it can be followed up so that it does not end up in limbo at their offices. Right now the contact information is being put together by a volunteer so that all that information will be available at a glance.

If you have the time and the energy, please consider helping with this endeavor. Our experience has shown, the only way to change inaction to action, is for us to be in the driver’s seat.

Sincerely,
NATIONAL ME/FM ACTION NETWORKK

Lydia E. Neilson, MSM
CEO, Founder.

Recommendations of the Ontario Task Force to the Ontario Minister of Health.

ONTARIO

Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS 

Task Force on Environmental Health – Phase 1 Report

When the task force was created, the terms environmental health and environmentally linked conditions were chosen as convenient “umbrella” terms for all three conditions. However, the task force acknowledges that: 

 
July 2017 (Last modified: July 7, 2017-10-19

Summary of Task Force’s letter to Ontario Health Minister, Dr. Eric Hoskins

Address of Health Minister
Community Office of Dr. Eric Hoskins, MPP St. Paul’s
803 St. Clair Ave West
Toronto
M6C 1B9
Email: ehoskins.mpp.co@liberal.ola.org
Phone: 416-656-0943
Fax: 416-656-0875
In its Phase 1 report, of a three-year mandate, the Task Force identified the critical steps the health minister and health care could take now to enhance the health of people with ME/CFS, FM, and ES/M CS.

a lack of recognition of the seriousness and severity of these conditions 
• a profound shortage of knowledgeable care providers 
• a dearth of clinical tools to support and guide care 
• a discouraging shortage of services and supports for people living with these conditions 
• an absence of support for family caregivers 

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS. It can take years of clinical referrals and fruitless (and often unnecessary and costly) testing for them to finally get a full assessment and correct diagnosis. Once they have a diagnosis, there are very few effective treatment options and social supports to help them live well with their conditions. 

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. It means that the conditions are not identified early so any care that is available is delayed. Requests for disability benefits and for accommodation at work, in housing and in health care are refused. Individuals and their families become socially isolated. 

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need. 

Siged Dr. Howard Hu 

(For brevity, will refer to the Task Force on Environmental Health as TF)

Executive Summary

Recommendations:

#1.1 Make a formal public statement recognizing ME/CFS, FM and ES/MCS;

#1.2 Fund academic chair positions in clinical environmental health focused specifically on ME/CFS, FM and ES/MCS;

#1.3 Modernize the Ontario Health Insurance Program (OHIP) fee code K037 – in collaboration with physician and patient experts – to ensure it recognizes all three conditions. 

#2.1 Establish an expert panel to reach consensus on clinical case definitions and clinical practice guidelines for each of the three conditions. 

#3.1 Provide funds to support the development of clinical care pathways for people with ME/CFS, FM and ES/MCS and map out an appropriate patient-centred system of care for Ontario. 

#3.2 Work with its partners, such as the Ontario Hospital Association, and with expert patients, caregivers and physicians to ensure hospitals comply, as quickly as possible, with relevant accessibility and accommodation legislation. 

#3.3 work with its partners, such as long-term care provider organizations, and with expert patients, caregivers and physicians to ensure long-term care homes comply, as quickly as possible, with relevant accessibility and accommodation legislation. 

#4.1 continue to fund this program until the task force makes further recommendations for advanced education specializing in ME/CFS, FM and ES/MCS. 

http://www.health.gov.on.ca/en/ms/ecfa/healthy_change/

Approach being used by TF:

Evidence-based that integrates evidence, lived experience and clinical experiences gathered from:

– expert members of the task force – scientists, clinicians, people with lived experience and caregivers;

– outside clinical experts who made presentations to the task force;

– the Ontario Human Rights Commission;

– data and research gathered and analyzed by the task force secretariat. 

Please see link: 4 Jacobs JA, Jones E, Gabella BA, Spring B, Brownson RC. Tools for Implementing an Evidence-Based Approach in Public Health Practice. Prev Chronic Dis 2012;9:110324. https://www.cdc.gov/pcd/issues/2012/11_0324.htm  

The Case for Action

TF states the life-altering condition and drastic impact it has on people’s health and quality of life pointing out that some people are so severe they are housebound and even bedbound. Compared with Ontarions with other conditions and how they are more deeply affected by quoting the Community Health Survey statistics.

Lack of Knowledge 

ME/CFS, FM and ES/MCS are relatively “new” medical conditions. Although there are reports of the symptoms dating back more than 100 years, it was only in the 1980s that these conditions started to be widely recognized and defined. Over the past 30 years, the body of evidence for each one has been growing. Each of the three conditions – ME/CFS, FM and/or ES/MCS – is distinct and scientifically recognized. Their characteristics and symptoms are known 

For details, please see:

The challenges of living with these conditions have been well documented in the business case for an Ontario Centre of Excellence in Environmental Health. http://recognitioninclusionandequity.org/about-the-conditions/community-consultation-and-patient-survey/  

TF states that based on twin and family studies, both genetic and environmental factors may play a role in ME/CFS and that a growing body of evidence suggests problems with inflammation, the immune system, the microbiome, neurotransmitters, the metabolic system and the mitochondria may be the mechanisms involved in ME/CFS.

TF also points out that with FM scientists agree that the central nervous system is likely involved. FM is often but not always triggered by physical injury or infection, and genetics may contribute to half the risk of developing the condition.

In regards to ES/MCS, few rigorous investigations have been done. However, studies done outside North America indicates that fundamental neurobiologic, metabolic and genetic susceptibility factors may play a role. 

To see more details on current state of recognition, please see:

Hu H. 2017. Current State of Recognition and Understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS): A White Paper for the Ontario Task Force on Environmental Health.  

Lack of Research

Lack of Research 

Shortage of Skilled Providers

Lack of Timely Appropriate Care 

Lack of Treatments

Lack of Support for Family Caregivers 

Lack of Recognition 

Recommentations

TF goes in more detail regarding the recommendations mentioned earlier in this report.

TF Provides the following links:

Evidence Synthesis Unit. (2016). Rapid Response on Definitions of Selected Environmentally Linked Diseases. Ontario Ministry of Health and Long-Term Care. 10 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters. Available from: https://www.ncbi.nlm.nih.gov/books/NBK284898/ 11 Evidence Synthesis Unit. (2016). Rapid Response on Definitions of Selected Environmentally Linked Diseases. Ontario Ministry of Health and Long-Term Care.  

Summary of Literature Review Findings: Case Definitions 

Clinical Practice Guidelines Used

Source: IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press. 13 National Institute for Health and Clinical Excellence (NICE) 14 Institute of Medicine. 2011. Clinical Practice Guidelines We Can Trust. The National Academies Press.  

Methodology for Assessing Clinical Practice Guidelines

TF references in international tool for evaluating the methodological regour used for guideline development:

Please see link:

http://www.nccmt.ca/resources/search/100

More statistical data

Dr. Howard Hu etal June, 2017 White Paper for the Ontario Task Force on Environmental Health

Adrienne’s Story

My experience of CFS began with a brief illness in July 1987. I was 30 years old at the time, with a month old baby, and a two year old. It felt like a flu, with a fever lasting through most of the night. The next day, I was better although with a distinct feeling that something had changed. Over the following week or two I experienced my first rounds of muscle pains in my shoulders and hips, swollen glands, fatigue and depression. I went to the doctor, and was screened for Epstein Barr virus and mononucleosis. There was no conclusive diagnosis, and I was left to come to my own conclusions. As my symptoms continued through the rest of that summer and into the autumn, I began to look into the matter on my own. At the time there were a number of recently published books that suggested I was suffering from Candida, or overgrowth of yeast in my digestive track. At one point my family doctor sent me to Vancouver General Hospital for an evaluation of my myalgias, etc. They appeared to be gathering clinical data, but I didn’t hear from them afterwards.

In 1989 I experienced iritis, which was treated with steroid drops by the ophthalmologist. Meanwhile, my pattern of flare ups settled into a pattern until I became pregnant with twins in the spring, and experienced a sustained break from the pain and fatigue. The babies went to term and were born in December 1990, and my CFS symptoms did not return to their usual pattern for some months. When I asked doctors about it, and about the theories of what I might be experiencing they were skeptical, and suggested it may be psychological.

While I was struggling with a bout of depression in 1995, the psychiatrist prescribed a combination of Effexor and Valium, which I was taking when my father died suddenly of a heart attack. A year of grief followed which was bearable for being understandable, and somehow easier to face than the depression that had preceded it. Over these years, my CFS flare ups were frequent and made life difficult to manage. Although I could always get through the day by pushing through with swollen glands, stiff hips, fatigue, anxiety and a feeling of desperation, it was often very difficult. I went to a naturopathic doctor, and was given intravenous vitamins, and a very long list of foods to avoid. The vitamins and dietary changes didn’t appear to make any difference. I also took a course in Transcendental Meditation, and began to meditate on a regular basis.

Over this time, I found relief came with hot baths, stretching, meditation and drinking alcohol. The baths and alcohol offered the most predictable respite, and I remember the naturopath being taken aback when I told him about the drinking. Although I’m reluctant to speculate about the reasons, I’ve wondered whether its immunosuppressant effects of may have come into play.

Since the last 1990’s, my flare ups have gradually decreased, and now only occur every few months. These periods generally last for a week or two; often just after I’ve recovered from a cold or flu. One thing that’s striking about the symptoms is that they are always much more disturbing than those associated with a “real” illness: an actual head cold is comparatively luxurious because it doesn’t come with the deeply wrought discomfort of the muscle pain and desperation. I also find that oral analgesics (acetaminophen, ASA, ibuprofen) do not bring relief.

In late 2011 I was experiencing a difference sort of pain in my upper back and legs, which turned out to be accompanied by a high ESR, and I was diagnosed with Polymyalgia Rheumatica. My rheumatologist oversaw a gradual tapered dose of Prednisone over the next three and a half years, ending with a course of Methotrexate for the final six months after discontinuing the steroid.

When the planned opening of the Complex Disease Clinic at BC Women’s Hospital & Health Centre in Vancouver was announced, I asked my doctor to support my application, and she ordered the requested blood tests in April of 2013, and submitted the results in along with my application. Some months later, I telephoned to ask about the status of my file. Due to organizational issues, it hadn’t reached the point where I would be contacted to complete the intake process. As of December 2016, I still haven’t heard from them. My doctor is angry because she was criticized for the number of tests, and their cost, and so would be unwilling to do so again in the future.

I am hoping my case will eventually be reviewed by this clinic so I can share my experiences with both CFS and PMR. My family doctor and rheumatologist remain unconvinced about the existence of the CFS/ME and/or FM. While I am fortunate to be free from symptoms most of the time, flare ups remind my how profoundly this mysterious ailment can affect both mind and body.

Sincerely,

Adrienne
Canada

How Difficult It Is To Keep Fighting

Michel’s Story

My doctor was completely convinced that I had ME/CFS and diagnosed me with that. Back in 2007 He was extremely patient and angry with the insurance company and spent a great deal of time and effort repeatinglly sending them his professional diagnosis. He reassured me he wouldn’t let me down. I loved to hear it.

The insurance company wanted a positive “test” however and there isn’t one and at that time easily got out of paying me.. The union lawyers were unable to produce any “test” results; They had to drop the case after 2 or 3 years of haggling.

The sad part is losing a career I relished. I was a science technician with the a District School Board for almost 12 years and set up experiments for high school students from grade 9 to grade 12. I almost always needed to participate amd worked with and along -side students and teachers; getting to watch them mature and succeed in that special environment. . It was fascinating and never a dull moment.

As an honours college graduate, I had the credentials to teach a general interest course in the evenings; showing adults how to create and maintain gardens for themselves.
I lost several of my reliable clients whose gardens I created and cared for. Work I loved to do and planned to use as a hobby and resource when I retired.

I learned to love the outdoors and took every opportunity to enjoy hiking the surrounding trails and hills.

It took my doctor 2 years of effort before I was accepted for CPP disability. If I had the strength, the resources, the help I would need on how to proceed; and of course, the marker that proves I have ME/CFS, I could sue, and possibly win my case, and do something more interesting than complaining too often. I read about two cases where the Judge’s decision went for the victims of the ME/CFS curse. If you read this short article, you get an idea of how difficult it can be for these people to keep fighting.

Michel

http://www.thecanadianencyclopedia.ca/en/article/chronic-fatigue-syndrome-recognized/#h3_jump_0

Woman with Chronic Fatigue Syndrome Sues Manulife for Disability Benefits


Woman with Chronic Fatigue Syndrome Sues Manulife for Disability Benefits

Personal Injury Lawyers / Disability Lawyers

Colleen’s Story

AN ODE TO YOU AND M.E.
By: *Colleen Downey
*Copyright 1996

Once upon an eerie morn,
I woke up with the claws of scorn;
One placed atop my aching head;
the other holding me in bed.

And months ahead to my surprise,
did fill with tears my swollen eyes.
Then I did learn what does prevail;
the illness that has made me pale.

For now my ears, they buzz as bees
that swarm amid the plants and trees.
And muscles grasp and clasp and twitch;
the skin upon my arms does itch!

Once I could RUN down any hall…
Yet… now I hold onto the wall.
At times… I am afraid to fall…
At times… I simply have to c-r-a-w-l…

And in my yard, no apple grows..
But yet, the scent does brush my nose.
And where my glasses I do place,
when I return, there is NO trace.

There is a reason I presume
why I have walked into this room;
And so go back and hope to find
the reason that I left behind.

For friends who have a winded pipe
of many words… the draining type,
I must now set a timer bell
to shorten tales they wish to tell.

As I explain in my defense,
“My friends, you must not take offense;
I yawn not at your strifes and whoas;
the illness makes me nod and doze.”

And what maintains a love affair?
There must be something in the air;
Or is it just my swings of mood,
that tango with your solitude.

Perhaps the scent of menthol rub
or sweetened words I often flub;
When on occasion n my head
the script is there but then instead,
the words do fumble and abort,
when “salt” is “sex” and “wall” is “wart”…
When “win” is “whine” and “nod” is “nude”
And speed is slow and mad’s the mood!!

The universe will soon reveal
the secret that it does conceal;
the reason for this pain and strife,
a new found purpose in my life?

Though now my thoughts are out of sorts
I still expel some fine retorts!
Just kindly tell me if you please…
WHERE HAVE I PUT MY BLOOMIN KEYS???
Footnote:
Published in 1997 in the former M.E. Canada newsletter and B.C. Fibromyalgia the same year

About Colleen:
Colleen was in two car accidents, one in 1994 followed by another in 1995. She came down with a flu and was diagnosed with ME/CFS, FM and MCS in 1996 after a year of symptoms. She spent three years in a wheelchair then slowly recovered to 50%, had a baby and went on to be a mom and work partime again for 7 years. In the last year she had a relapse and is “…..working on pulling out of it. I am aiming for a full recovery, slowly, one day at a time.”

How I learned to research through the 4 letter word

How I learned to research through the 4 letter word.

When my family and I moved to Canada from the Netherlands, none of us knew any English. Naturally, we did whatever we could to learn. My dad did his best to help us all so when he would come home from work, he would bring us a new word to learn.
Then there was the fateful day, although I didn’t know it at the time, that I learned to never take for granted what you are told is accurate. This day my dad came home and told us that the word he was about to tell us was very important. He said that each time someone would say something, they emphasized it by putting in this word. He said, each time you want to say something important, you put this 4 letter word in it and it will show the importance of what you are saying. We were suitably impressed.
I had just started my first job working in the Claims Department of an Insurance Company. My English was good enough for the job I had applied for but was at the stage where I wanted to impress my Scottish boss. I even remember his name – It was Ernest Hagan. Other names have come and gone but this incident left such a lasting impression that I have never forgotten it.
I remember going to work and my boss always was in first and want say good morning to me and telling me it was a nice day. I told him it was a (4 letter word) good day. I thought he looked at me strangely but he didn’t say anything else. To practice a new word, I would use it the whole day so that it would become part of my vocabulary and I could say it with ease.
For that whole day, I use that 4 letter word at every opportunity I had that by the end of the day, my boss called me into his office. He said, Ms van Mourik, please do not swear in the office. No one has the nerve to tell you this but the word you are using is offensive. I was surprised and said, doesn’t it mean very? He told me that he did not want to embarrass me but to talk with someone who could explain it to me.
When I finally found out what the word meant, I never again would take for granted that what I was told was accurate until I would check it out. This has never failed me and to this day, no matter what new information I receive, I will make sure that it is accurate before I would use it.
I never thought the 4 letter word was able to teach me anything but it did.
Lydia
May 13, 2016

Oh good, it is just a warning of a migraine coming

It never fails. A few days before I get the migraine, I start becoming moody and all these negative thoughts come into my mind. Things all of a sudden become too bright and I become very sensitive to smells. That comes close to also getting nauseated which is a sign I am aware of but as it follows after the other sensations, I never connected the two.

When you have ME/CFS, you are alert to symptoms I think more than the healthy individual but I never connected the emotional disturbances. It is always a relief when the migraine comes on which explains the other symptoms. The negative of all this is that it is great to get a warning but as I get the auras etc., a warning doesn’t do me any good as I cant do anything about it except wait for it to pass.

Not knowing what I was dealing with and as I have heart problems, the first thing I must always do is check my blood pressure. Interestingly I discovered that my BP goes up when I get a migraine. I wonder how many other people are aware of this.

I started keeping tabs on things I do in an effort to avoid triggers and so far I have discovered that cola of any kind brings on a migraine for me as does msg. I’ll keep this up for a couple of weeks to see if I can see a pattern forming.

My youngest son has had migraines since the age of 7 and as he got into his 20’s, he has been getting them every day with the auras as well as excruciating pain. His pain gets so bad that his blood pressure becomes dangerously high and needed to be put on medication to control it.

My mother had migraines all her life but did not have the auras with it. She had gotten into the habit of taking aspirins in the morning every day to control the pain.

My oldest son knew nothing about migraines and although sympathetic, did not understand them. Then apparently a few weeks ago he had a migraine attack and was out of commission for days. He said he was unable to function and had no idea how incapacitating a migraine can be.

I had some warnings today of an up-coming migraine but this time I am prepared and knowing that the emotional issues will go away the moment the actual migraine starts. I don’t look forward to the migraine but I am relieved that that is what it is and not another issue to deal one. It is the same one but now with enlightenment.

Lydia

Hannah’s Story

HANNAH’S STORY

10:07PM GMT 24 Mar 2016

If you had told me 10 years ago that one day I would be studying maths at the University of Bristol I probably would have laughed, or cried. Maybe both. But I definitely wouldn’t have believed you.

Around this time, back in 2005, I was struck with a nasty virus and never fully recovered. As an 11-year-old I saw more of hospitals than I did of school. After a year of being completely bed bound I was eventually diagnosed with Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome.

• The Symptoms

ME comes with an array of symptoms; a relentless throbbing forehead ,crippling on a bad day and still present on a good day, an ache in every muscle and joint that is amplified by any exertion, a mind fog that makes concentration a constant battle, and the memory equivalent to that of a goldfish. Most of all, overwhelming fatigue – completely unresolved by sleep.
I went from being outgoing, sporty and social to not being able to sit up for more than minutes at a time.
On the days I was at my best, the excitement would be getting to go downstairs for an hour or two, although getting me back up them would have been a struggle without my brother. Sensitivity to light and sound made the smallest everyday occurrences almost unbearable, being in the same room as someone who ate or breathed too loudly was intolerable. Still is (sorry).
On the days where the illness slightly eased its grip on me, my days would be consumed with One Tree Hill box sets, yet even then someone had to change the disc for me.
ME comes with an array of symptoms

Common misconceptions with this illness stem from the word ‘fatigue’, which is used interchangeably with tiredness and exhaustion. This leads many people to believe that the illness just refers to being a bit tired like everyone else after a long day or the state of being sleepy; whereas its real definition describes the body being utterly exhausted and the accompanying symptom of insomnia makes sleep hard to come by.

I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.
When the time came to discuss a plan for GCSEs I was only managing a few days of school a week, and was advised by my nurse to take none and try to recover by resting permanently.
The assumption often is that a child would jump at the chance to give up school, but in reality that’s very rarely the case and definitely wasn’t a choice I was able to face.
“I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.”
Eventually I came to accept that I didn’t really remember what it was like to not wake up feeling unwell, so maybe it was time to redefine my ‘normal’. I compromised with a 40 per cent timetable, which enabled me to take six GCSEs and later three A-levels. Despite this, I never really thought university would be on the cards for me.
However with the overwhelming support of my wonderful family, friends and teachers, I was offered a place to study maths at the University of Bristol.
Many people who know me at university may be quite surprised to read this article. It is not something I often share with people. However, with the new research, conducted by the University of Bristol, showing one in 50 16-year-olds have been diagnosed ME, it is clear that the struggles of continuing education with a chronic illness are common.
Through the ME Association I have spoken to many fellow sufferers about their choices regarding higher education. Many chose to continue their studies, although not all stand by this decision. Numerous sufferers opt to continue education with the Open University, which allows for much greater flexibility and management.
These are some of the approaches I have adopted to make life at university with ME easier.
Be proactive

The comfort blanket that I had relied upon and left behind on moving to Bristol was probably a lot bigger than your typical student’s. My teachers and friends who knew all the ins and outs of my situation, and provided support without having to be asked, were no longer present. It took a long while for me to accept that asking for help wasn’t a sign of weakness.
I would advise any student with ME to request accommodation close to where you’ll be studying, this will conserve precious energy – especially when you have to get up for a 9am lecture. Also inform your university about your illness so they can advise you of the protocol for any extensions or extra help that you may need.
Be independent, but have a support system

Everyday things like cooking, cleaning, and doing your washing are definitely some of the less appealing aspects of student life. Independent living can be a challenge for any young person, but throw in a chronic illness and it gets tougher. I’ve learnt a few tricks to make life a little more manageable; online grocery shopping avoids lugging around shopping, and making sure I always have something easy to cook in the fridge means I can eat on an unexpected bad day.
It’s also important to make sure you have a few people around you that you can confide in, and fall back on. Not everyone needs to see the crash and burn and the days where getting out of a bed isn’t an option, but having the few that will come by to check on you or grab you something for dinner will make all the difference.

Learn to live with FOMO (fear of missing out)

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS TO YOUR HEALTH

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.
In the past few months, I was reminded again how important it is that when you experience a new symptom, all avenues are explored before concluding your illness has added a new symptom.
I just lost a friend who for the past year was going to doctors for an ever-present headache. As she had been diagnosed previously, not much was made of her new symptoms and no tests were done. Finally, her heaches were so severe she was rushed to the hospital where tests were finally made. It was a dire diagnosis and her family was told she had only weeks to live. Tests indicated brain and stomach cancer but it was so advanced, there was nothing that could be done. Four days later she passed away.
Another friend of mine has had Lupus since she was a teenager. She is used to the flare ups and saw her rheumatologist on a regular basis. She then started having problems with her energy levels to such a degree that she was spending more time sleeping than staying awake. Her rheumatologist advised her that her Lupus was acting up and she would get over it.
Fortunately for her, the Rheumatologist retired and she got to see a replacement. When she related what had been happening to her, he immediately sent her for tests for her kidneys as well as her heart. Her heart turned out to be the culprit and without intervention she would have been dead in a few months.
Although these were extreme cases, there is also the possibility that a new symptom may be treatable and relying upon it being related to your present illness or condition may obscure any chance of getting relief.
It is important to remember that no matter what illness you have, it does not make you immune from getting anything else. To be safe, first get the new symptom checked out. Neither you or your doctor should feel confident that it is related to your present condition or illness.
Lydia
November 16, 2015

Sheila’s Story

Sheila’s Story

When I look back on my life, with the knowledge & medical diagnosis that I now have, a lot of things make sense. I can say ‘Now I understand why’.

In 1997, at age 38, I was single & 4 years into a physically & mentally demanding career. In my effort to stay at work, I was having regular trigger point massage therapy to keep head & back aches manageable. I had also started wearing orthotics to correct a congenital foot defect that, I was told, was causing me to burn more energy than the average person every time I took a step.

Even with the massage & orthotics, I started to experience increasing episodes of fatigue unrelieved by sleep, multiple throat illnesses, head/back/body pain, until my body shut me down in Jan 1998. I ‘crashed’. I ‘hit the wall’. I felt & looked, like an exhausted marathon runner looks when they collapse, unable to move another step. A local physiotherapist tested for lactate while I was on a treadmill. He was surprised at my very high levels at low heart rates. He then used the same treatment he would recommend for a high level athlete who had overtrained, to reduce those levels. Unfortunately for me I never fully recovered & after one effort to return to work, had to stop working in March 1998.

I was eventually told by 3 different specialists that I “presented with CFS”. I refused to accept it My understanding & the main implication from a 1994 CFS reference book, was that CFS was primarily a psychological illness. How could a mental illness explain my leg weakness, my shortness of breath, my body aches & pains? I knew what depression was & this wasn’t it! I wanted to carry on with my life, my home renovations, my sports & my career. I didn’t want to be lying on a couch all day. I didn’t want my goals for the day to only be – get up, feed myself, make my bed & lay back down. There had to be something else wrong with me. No way was it CFS!

It didn’t help me accept that I had CFS, when in early 1998, while I was waiting for an explanation for my extreme exhaustion, a paternal first cousin got tired of waiting for medical help for her own exhaustion. After suffering with CFS for 15 years, she carefully wrapped up her affairs & took her own life. Was this my future if I accepted the CFS diagnosis? Not if I could help it! Denial is a wonderful thing sometimes.

With the help of a nutritionist- who explained that healthy calorie intake must match physical output & that yes I did need water, fat, salt & minerals in my diet & the ongoing help of the physiotherapist, I eventually returned to work after approximately 10 months off. I was assigned a different position to assist with my continuing fatigue & cognitive issues. My life consisted of eat, sleep, go to work, repeat. No more volunteering, no sports, no home renovations, no yard work. I made it work. I had to. I didn’t want to lose my home.

The next help came from a naturopath who prescribed thyroid (T3+T4), adrenal & mineral supplements. They helped enough to give me a bit of a life outside work. Thus with a healthy diet, supplements, pacing/rest & a new husband, life was pretty good. Every aspect of that life revolved around me getting enough rest to return to work but it was what we knew as our normal.

Then came the year 2010, when I thought it was time to lose weight & get in shape. Biggest mistake of my life. The symptoms that had caused my crash in 1998 returned. Starting with left leg weakness, back & head pain & ending months later with brain fog, dyslexia, stammering & word loss. I went off work in March 2011, never to return.

I had to see numerous specialists, (again). Most with no idea what was wrong with me but assurances that it wasn’t MS or Thyroid or Adrenal or Cardiac or Pulmonary or…..No diagnosis, no money thus my disability benefits were cut off. The only diagnosis, in early 2012, was somatoform disorder with a possible depressive episode & anxiety. I didn’t agree with anything but the anxiety but agreed to try medication. Two drugs & many months later, after not being able to tolerate either drug at proper dosage, I informed my doctor that I wanted to stop taking the pills due to their side effects. I no longer knew if my fatigue was due to my body or the drugs. We monitored my coming off the medication & determined that it had been contributing to my fatigue.

In mid 2012, I learned that my left leg weakness was another congenital defect. This time with the L5/S1 transverse processes. There is no cure but after a visit to a pain clinic, a recommendation of the Complex Chronic Disease Clinic application triage group in early 2013, I now receive facet joint injections a few times a year. My left leg works & the pain is greatly reduced.

In mid 2013, I saw a doctor who specializes in ME/FM. He officially diagnosed me with ME/CFS, told us the criteria I met & the category I fitted into. After numerous tests, he told us that I have issues that affect my mitochondria, immune system, brain, nervous system & thus my whole body. I cried, no more denial plus a doctor who not only believed & understood when I explained my symptoms but had no doubt what illness it was. He even offered a few suggestions that have helped to relieve my symptoms, although I’ve had to adapt them to what my body will tolerate. Lately we’ve added Immunovir to the list. So far I’ve noted more reduction of symptoms & hope that can continue.

After 16 years, I have had to stop denying that I have M.E./CFS & that the doctors were correct in 1998. As I think back on my life, I’ve probably had it since I was a child. I had just adapted my life to my low energy levels, which to me were normal. Then I had a career that I really wanted to keep & pushed my body beyond it’s limits, instead of listening to it. How was I to know the repercussions?

So now it’s 2014. I’m 55 & officially out of the workforce never to return. I had to hire a lawyer to get my disability benefits that had been denied. Mediation eventually resolved that issue this year. With the help of the CPP Disability Manual from the ME/FM Action Network & the specialist, I have been accepted for CPP Disability Benefits. My husband & I are slowly recovering from the stress of the last 4 years. I continue to try to recover from my 2nd major crash, unfortunately it is not as successful as after the 1st crash, with cognitive issues playing a much larger role this time.

I try to listen to my body more. I try to ‘PACE’. I often wear a heart monitor when active so as to stay in MY zone (<125 bpm). I do self massage & deep breathing with imagery, stretch, eat as healthy as possible, take supplements & Immunovir, drink lots of water & find joy/peace where possible. I'm not always successful at all of the above but what choice do I have but to try? I've seen the alternative & what it does to those left behind. Life is precious. Life is short. I will live it to the best of my abilities.

Sheila

In memory of Donna Desjarlai

Edith’s Story

IN SUPPORT OF NATUROPATH DOCTORS & OTHER COMPLIMENTARY HEALTH CARE SPECIALTIES

I’ve had fibromyalgia (FM) for almost 20 years. It started on Valentine’s Day in 1995, after a spinal injury. I spent the first 2 years in severe pain, exhaustion, nausea, brain impaired, and mostly in bed. After being referred to many specialists, a physical medicine specialist finally recognized what I had.

My M.D. gave me pain and sleep medicines which was of great help, but that was all he could offer me. When I realized that he did not know very much about this strange illness, it really scared me, and I decided to do my own research to see if there were other things out there that might help.

I started by joining the Winnipeg FM support group and made good use of their library. I also became a frequent customer of book stores, searching out and buying any books I could find on ME/CFS and FM. I bought a scribbler and kept notes on important information I found as at that time I could not retain the information I read.

One of the most helpful books I found was by Jacob Teitelbaum, MD entitled From Fatigue To Fantastic. His third edition is still in print, and he has a new one available entitled The Fatigue and Fibromyalgia Solution. This is a comprehensive guide on treatments he has used on his hundreds of ME/CFS/FM patients. As I followed his writings, I noticed that he was becoming more of an Integrative Practitioner, adding more and more natural remedies.

As time went on and I developed more FM problems, I decided to see a Naturopathic Doctor that a friend had recommended. It was the best decision I’ve made in the last 20 years!

On my first visit with my new N.D., he did not offer me a cure for FM, but he told me he would listen to my symptoms, do some lab tests and work on correcting the underlying causes of my health issues. The first lab tests came back reporting that I was fighting an entero virus. He got rid of it by using a herb, and my nausea stopped.

N.B.. He did not use an antibiotic! So, as he treated me for each difficult issue, I started feeling better and better.

I was curious, so I asked my N.D.. one day what kind of help his patients were looking for. He said that over 95% of them come to see him because they are sick, the rest want direction on how to keep their good health, and live a longer life. During some of my treatments at his clinic, I had a chance to speak to other patients and was absolutely amazed at some of the things he was doing to help them. It takes as many years of education to become a Naturopathic Doctor as a Medical Doctor. N.D’s are fully licensed by our government to practice in our country, and I know that my N.D. continues his education, always keeping on the cutting edge of his profession.
Many health insurance companies are now offering benefits for their clients to see Naturopath Doctors. You can bet your bottom dollar that they wouldn’t be doing that if these doctors were not getting people well and back to work as fast as possible, saving them “big bucks”.

For all of you that are ill, and are not getting the help you need, do your own research, and do not let anyone discourage you from seeking the medical help you need, from whatever health practitioner you deem appropriate. You may get most of your health and life back just like I did.

I HAVE INCLUDED A RECORD OF THE HEALTH ISSUES I HAVE HAD BECAUSE OF FIBROMYALGIA AND WHERE I GOT THE HELP.

EDITH
Teulon, MB

HEALTH ISSUES Medical Doctor Naturopathic Doctor

RETRO VIRUS YES

SLEEP DISORDER YES YES

PAIN RELIEF YES YES

HYPOTHYROIDISM YES

ADRENAL SUPPORT YES

DIGESTIVE TRACK YES

VITAMIN/MINERAL DEFICIENCY YES

ARTHRITIS YES YES

ALLERGIES YES

SEVERE MUSCLE SPASMS YES

COGNITIVE IMPAIRMENT YES YES

IMMUNE SYSTEM SUPPORT YES

HEAVY METAL DETOX YES

NUTRITIONAL SUPPORT YES

ESSENTIAL AMINO ACIDS REPLACEMENTS YES
[lab tested and was the most helpful
treatment I received]

NCR REALIGNMENT OF HEAD TO SPINE YES
[corrected my spine curvature.
painless (Google it]

NAET ALLERGY REMOVAL WITHIN 24 HOURS
[Done by a doctor of Chinese medicine. Some acupuncturists can also do NAET]
(google it)

CHIROPRACTIC WAS OF ENORMOUS HELP I SUFFERED SO MUCH LESS WHEN MY STRUCTURE WAS ALIGNED.

ACUPRESSURE WITH THUMB DOWN DEEP ON TRIGGER POINTS, HOLD FOR A BIT.
(great for releasing muscle knots)

PHYSIOTHERAPY FOR MORE SERIOUS MUSCLE PROBLEMS

FAR INFRARED DOME THAT FITS OVER BODY TO LOOSEN TIGHT MUSCLES WITH DEEP HEALING HEAT
[mine is from HTE CANADA]

STRETCHES EVERY MORNING RELIEVED SO MUCH PAIN AND STIFFNESS

EXERCISE- regular care of my home and walking.
[ I HAVE A CLEANING LADY COME IN EVERY 2 WEEKS TO DO THE VACUUMING AND FLOORS, AS THOSE 2 MAKE ME WORSE]

D-RIBOSE A SUPPLEMENT THAT GAVE ME MY LEGS BACK. THE STIFFNESS WENT AWAY AND I WAS ABLE TO WALK NORMALLY AGAIN. HEALTH FOOD STORE. NOW COMPANY 1 LB CONTAINER IS THE MOST ECONOMICAL

I WATCH WHAT I EAT CLOSE TO BEDTIME,AS IT WILL CUT DEEP SLEEP. ONLY AN APPLE FOR ME.

EAT LOTS OF PROTEIN AND A LOT LESS CARBOHYDRATES. HAVE MORE ENERGY.

REVITIVE FOOT MASSAGER IS EXTREMELY GOOD FOR LEG SPASMS AS WELL. HALF HOUR EVERY NIGHT BEFORE BED. LARGER DRUG STORES CARRY IT.

FLU SHOTS IN THE FORM OF BEADS, AS I CAN’T TOLERATE THE SHOTS. GET FROM MY N.D.

WILD YAM CREAM, A PRECURSOR OF PROGESTERONE CAN BE HELPFUL IF MENOPAUSAL
[HEALTH FOOD STORE. I FELT WELLBEING AND MORE ENERGETIC]

PRIMAL DEFENSE AND PROBIOTICS ARE EXCELLENT FOR THE DIGESTIVE TRACT
[HEALTH FOOD STORE]

I sincerely hope that this information will be helpful for other ME/CFS and FM sufferers. I would like to hear what has helped others in both QUEST and Lydia’s Unheard Voices: My Story.

Edith

Edna’s Story

Edna’s Story

I am a retired US Navy nurse practitioner. I was commissioned into the Navy in 1996, immediately after completing my bachelors in nursing. I caught a flu while at work at in 1997. My temperature went up to 103.8 degrees Fahrenheit. I believe this is when I first became ill with ME/CFS. It took seven years to be diagnosed, even with wonderful doctors all around me. Then I was ostracized and tormented about my illness until I managed to retire but only after having to hire my own attorney at a whopping $15,000.00 – my entire life’s savings.

I managed to retire with my soul barely intact and moved to be closer to my sister and family, and find a part-time job which I love. However, I now see ME/CFS day in and day out in my own patients. These Veterans often became ill during their military service or deployments. One barely middle-aged man has been ill for 20 years without a diagnosis.

There is not only a lack of knowledge of ME/CFS, but an ignorance in diagnosing and treating. Even when the diagnosis is handed to another provider on a silver platter, it is often either ignored or simply refused acknowledgement. Patients continue to suffer, and I get more and more frustrated. Patients are diagnosed as bipolar, depressed, anxious, and psychosomatic and ME/CFS is never even considered in the differential. It is abhorrent.

This is just a touch of my own story, but I wanted you to know how my own illness has affected my desire to help others, and how my ability to help others continues to be blocked due to lack of appropriate knowledge.

Edna
U.S.A.

Audrey’s Story

Audrey’s Story

AN UNEXPECTED JOURNEY – M.E. – NOT ME!

The Old Audrey was gone! Even I couldn’t believe what was happening to my body!

I was happily working full-time in Human Resources. Just where I belonged – people were my thing! I had the best husband a lady could ask for and 2 great kids, whom were athletic driven so I was in the arenas and soccer pitches 3-4 nights a week. And I squeezed in time for my activities with organizations & groups that I had a passion for.

After a car crashed into our home in 1997, the shock sent my body into a whirlwind. After work, I no longer could walk 45 minutes per day with my husband. Pain was immeasurable – it was wide-spread. I was diagnosed with Fibromyalgia. I kept working, but things had changed dramatically for me. My body just wouldn’t cooperate the way I wanted it. I kept pushing! My A-type personality wouldn’t let this lady give in! Should I have?

After my mother passed away in the same year, my husband whisked me off to Mexico with our good friends. I came back and a New Audrey appeared. It was frightening. My husband felt I picked up a virus there that never left me. I found I couldn’t put in my 40-60 hour work week. What was happening to me? I got so I couldn’t walk or raise my leg! Now that was scary. I started to feel seriously ill with all my blood results coming back normal. However, I knew my body and it was far from normal. I eventually had to stop working completely as I was now bed-ridden.

My Rheumatologist referred me to a hospital where I was diagnosed with Myalgic Encephalomyelitis (M.E.). I couldn’t believe it! Not this fun-loving, hard-working lady! Not M.E.! We had a friend who encountered this appalling disease and he was very ill. I admit it, I was very terrified.

This is where I want to explain my complete frustration with our Government. Why is it that the Government only permitted two visits with the only Doctor educated in M.E. that I had located? I’ve never forgotten this precious Doctor I met, as she deeply cared and had great compassion for her patients. WE must keep fighting as the Government only permitted me two (2) visits with her in a life-time. It is outrageous. What other diseases are there, that have such discrimination. This seemed at the time, my only help for this disease – I felt so alone. I have also since learned that they do not teach such conditions in Medical School. How alarming!

I was in for the ride of my life or shall I say the fight of my life. My symptoms worsened with no medical help. My family Physician tried to treat the symptoms. At this time in my journey, all the help I received from the outside world was the National ME/FM Action Network, The ME Association of Ontario and a few precious friends that God put in our path. However, this unexpected journey, also brought forth many loving and caring friends. God sent me an Angel who never gave up on me. She encouraged me when I had nothing left. She educated and visited me with tea in hand. She understood as she had M.E.

Then sadly, another fight in my life arrived. Maybe some of you will not be surprised as it was with my Insurance Company. I had to admit, I was extremely astonished as I had worked in Human Resources and expected they knew I was an extremely dedicated and honourable employee. I finally had to take retirement as my health was worsening with the stress that the Insurance Company placed upon me. As I look back on this, I would have hired a Lawyer; however, I was just too ill at the time to go through the process. I truly deserved the Long Term Disability Payments I had subsidized for so many years. And here I am – 6+ years later and extremely ill.

God will whisper in your ear and if He does – listen please! One of my best friends told me about her friend who had Fibromyalgia and was receiving Lidocaine Infusions. She said it changed her life. Then my good friend who is a nurse, suggested I see an Internist. Well, years and months passed and I didn’t listen to God’s Angels.

The emotional pain on some of our friends and family began to take its toll too. Their body language or remarks were devastating. Didn’t these people understand? I wasn’t even strong enough to sit up or able to take a sip of my ginger ale. I could hardly cope with my ill body, let alone some of my family and friends demeaning me.

The emotional pain of not being believed and being so terribly ill was almost worse than being bed-ridden. How could they not remember the old Audrey– the lady who never stopped? How could they not believe I was truly very ill? I sought help for the emotional impact this caused, as I couldn’t keep up to the various symptoms of the illness, or the emotional pain it brought. A social worker I knew was another life-saver – educating and assisting me in every way. She was also a sufferer, walking in those moccasins, made her assistance alive and real. She is also trained in Eye Movement Desensitization and Reprocessing (EMDR). EMDR is a procedure to help people process traumatic or distressing memories. This therapy is to process completely the experiences that are causing problems and include new ones that are needed for full health.

My husband took a copy of all the “M.E. symptoms” and distributed them at one of our Larger Family Gatherings. He tried to educate my loved ones on what I was experiencing. I was so proud of this man I loved so deeply. It took a lot of courage and surprisingly, it seemed that most of the men listened more carefully than the women did and were really ready to learn.

Through this journey, I was always mindful of what God was trying to teach me. I was always a compassionate and caring individual, but was he testing my faith? The power of prayer sustained me when my faith was as small as a mustard seed; or when I couldn’t take another day of feeling so ill; or when I missed the Old Audrey. Prayers from friends as far away as England, and as close as my Church family and from my Aunt and her Prayer Partner as well as from other very special friends and family.

Those friends and family members who stood beside us will always be cherished in our hearts. They helped us with this extremely unexpected journey in our lives. The casseroles, phone calls, cards and visits truly have helped us through this horrendous ordeal. I would love to name them all, however, having brain fog I might miss some Angel that helped me through and I just couldn’t do that. To all of you that know who you are – you truly were sent to me at that specific time. You knew I needed you just when I did. Thank you is not a powerful enough word to explain what is really in my heart.

God decided I needed a bang on my head! Remember the whispers of years ago? My son, who is a Respiratory Therapist and my daughter-in-law, a Midwife, arrived home. They and my daughter, a Nurse, sat my husband and I down. They said the way my health was declining, I wouldn’t be here in 5 years and they were very concerned the burden all this was having on my husband. My husband has been a saint on this very rough road and was doing most of the cooking, cleaning, washing, and drying my tears. You name it, he did it. God truly hand-picked this man for me. When he said “I do” so long ago, little did he know how our retirement dreams would be forever changed! This was the bang on my head that I needed – God’s bang!

I went to our family physician right away and got a referral to an internest someone had suggested to me earlier. This internest was one of the most compassionate and caring Doctors we have met through this journey. and believe me; we travelled many roads to get some help. This Doctor was amazing. He was telling me how when I stood up, I felt like I could fall onto the floor like a puddle. He was describing my symptoms to a T. I didn’t have to tell him – he knew! What a relief! He was just like the Doctor I had met at years beforehand. He changed my medication and started me on monthly Lidocaine Infusions that very day.

I wish I could tell you that I’m healed, but I can tell you that this lady’s suffering is a little less, and I now have HOPE! Losing Hope is devastating. Since I’m on cortisone for life for another health-issue, he was wise enough to prescribe a medication that is used along with cortisone. The brain symptoms are starting to diminish (but not gone). I literally couldn’t hold my head up at one time. At my last visit with him – I explained to him, that just a little measure of improvement is like reaching the mountain top for me.

It has been 5 weeks now since I saw this Doctor and had this miracle in my life, but I’m compelled to tell all M.E. /Fibro sufferers – don’t give up and keep the faith! God answered my husband and my prayers. If only I had listened earlier to the Angels He pointed my way. So keep listening to those whispers – they just might lead you to the right direction.

What I Learned:

• Get a proper diagnosis;
• Find a Doctor that is caring, compassionate and knowledgeable;
• Get yourself educated — research on-line at the NATIONAL ME/FM ACTION NETWORK at www.mefmaction.com. Information is so priceless in this journey;
• Educate your family and friends;
• Keep a journal – you’ll be surprised when you look back at how far you really have come;
• Stay away from people that are not supportive – it zaps energy you don’t have;
• Don’t be afraid to ask for help from your family, friends and your community health care centre;.
• Allow yourself to grieve for the loss of your health;
• Don’t ignore other health issues that you might be blaming on M.E. symptoms;
• Keep close to God or whomever is your Higher Power;
• Join a Support Group – you’ll be amazed at the treasured friendships you’ll make as well as the education you will receive;
• PACE yourself – this is vital for your well-being;
• Seek help from a Counsellor if you are getting emotionally burnt out;
• Never Give Up Hope; And
• Above all – Love yourself – have compassion for yourself – you are a precious person.

Audrey

LYME DIAGNOSIS STORY

LYME DIAGNOSIS STORY

I am including our family story here to encourage anyone who has been diagnosed with ME/CFS or fibromyalgia to consider the possibility of Lyme disease.

I was “diagnosed” 30 years ago, in my mid 30’s, with ME/CFS and fibromyalgia. My son, at the age of 17 very suddenly became quite ill and was diagnosed at first with Mononucleosis. After about 2 years of steady decline he was diagnosed with CFS/ME, by one of Canada’s pre-eminent CFS doctors. My daughter, also at the age of 17, likewise became suddenly very ill and received the same diagnosis. No medical person ever suggested Lyme disease to us at any point. None of us ever had the classic “bulls-eye” rash.

On our own initiative we were tested in a Canadian lab for Lyme disease but it came back negative so we kept on searching, not knowing at that time how unreliable Canadian Lyme testing was and still is. After 6 years of devastating illness for my son, and 4 years for my daughter, we all tested positive for Lyme in a US lab. By this point my daughter was completely house-bound and my son was bed-ridden, both with serious gastro-intestinal and neurological symptoms.

We found a private MD who would treat us and with his expertise and that of others in our medical team, all at our own expense, we started to make progress.
We have had the wonderful care of our private physician here in Canada, but have also travelled to a clinic in the US repeatedly for additional care. We have included many different healing modalities in our journey, each with different degrees of effectiveness.

We all three have steadily improved. At the time of writing, my daughter has reclaimed her life. She is in Medical School now and back to playing ice hockey. I have also improved tremendously. My son is still struggling. He has been sick for 11 years now and still is unable to live independently. He has gained a huge amount of ground, but still has a way to go.

I strongly urge anyone with an ME/CFS and fibromyalgia diagnosis to look into the possibility that their symptoms might be due to Lyme disease.

ANON

Linda’s Story

Linda’s Story

Looking for the light

There are fleeting moments when I think that I’m coping with ME/CFS and then I crash, again. As I struggle to climb out of the abyss for the umpteenth time, I wonder if I can ever do this again. Saying that, I know that there is, up to this point anyway, a still, small voice that urges me not to give up.

ME/CFS has been my unwanted companion for 19 years. Before it bit me I was an active person who bragged about my health and fitness. I should not have done that, I tempted fate. Being a wife, mother of two sons, a part-time nurse and volunteer defined who I was. Many years later, I have no idea who I am and I cannot say aloud, I am that person who is chronically afflicted.

Floating along on the river of “denial”, I’ve been fortunate to have a supportive family, though I know there are times when they have doubts. And why wouldn’t they, when I have so many of my own. After all of the research I’ve done, I know that ME/CFS is a very real condition and I have it. But there are times still, when I berate myself and wonder why I can’t shake the beast.

The psychological impact of ME/CFS has been the most difficult hurdle for me. Depression, the black dog, is ever near. I detest taking anti-depressants but I’ve come to accept grudgingly, that I have to take them on occasion. My first bout of depression happened pre ME/CFS, just after the birth of my first son. Post partum depression wasn’t recognised back then, as it is today and I toughed it out, without chemical help. I wonder if something switched on or off in my brain then that led to what I’m experiencing today. So many questions, it hurts this wonky brain of mine.

When the black dog stays away, I do fairly well. I figure that I’m functioning at about 60 percent on a good day. This means that I can partake in some physical activity, walking, a little gardening, or some housekeeping. Although I know the importance of pacing, I haven’t mastered the art. I overdo and the inevitable crash will come, along with my friend, the black dog. He is so familiar, I should name him, Sad Sack comes to mind.

These days I am trying to cultivate an aura of gratitude. I’ve been told that one cannot be grateful and miserable at the same time. I am grateful for many things, my husband who has been making me laugh for 38 years, two fine, intelligent sons who coped well with a Mom who changed overnight and many friends and family who stand by me, even those who think it’s all in my head. Oh yeah, it’s in my head all right, just not in the way they are thinking. I count my lucky stars that I live in a wonderful place, where community matters. It is post hurricane Igor here in Newfoundland and we survived, devastation everywhere but the people came together and helped each other. That’s what we do here, it’s been that way for five hundred years.

When I get in my car and drive a few minutes and I can see the ocean and breathe in the beauty around me, I know that I am a fortunate woman. So maybe that is what defines me now, I’m a grateful woman, thankful for what I can do. Of course there will be times when I’m too sad to see that but I will reach deep to grab that feeling again. For now I find happiness in the moments, knowing it is not a sustained state. As my favourite poet, Leonard Cohen, said so beautifully, “ Ring the bells that still can ring, forget your perfect offering, there is a crack in everything, that’s how the light gets in”.

Linda

Newfoundland

Dianne’s Story

Dianne’s Story

As a child, I recall being very tired. I slept in the car on long trips, and I slept on the weekends between school. Most schools had fun days-but for me I was exhausted afterwards. I struggled in gym but kept up. Nursing, my career choice, fell away from me. After 10 rotations and with only 2 to go I left the OR.

No union at that time. It was just in the making. I would never have to scrub in as I would be the circulating nurse, even if I was on call. Many of my fellow nurses and doctors expressed their disbelief. My life became very hectic. I would ski but falling, water skiing but falling. I would then go and crash. However, I would be back the following week-end and start all over again I had another accident and suffered a concussion . That was the end of these curricular activities.

My next project was dogs and dog breeding. When I was showing dogs in the rink I would become exhausted. I would be forced to lie down which made it hard on everyone else. When breeding pups, my nursing skills at least came in handy. I was travelling to Ohio, New Jersey, Michigan, Virginia, New York and most of Canada, and the days and hours were long. By now I was having trigger points and started putting on Flexeril which gave me some relief. Then the pain became unbearable, knots of pain in my back, neck and legs. I took Tylenol #1, one to three at a time, and went to different pharmacies not to arouse suspicion.
During a visit with a psychiatrist I was diagnosed with bipolar disorder. Yes, if I find myself high I am probably doing something. Lithium has helped. Some depression medications have helped but others not. So I am receiving a double whammy of serotonin.

I have become very inactive, and have gone through many medication changes while just lying on the couch or being in bed. I wonder if it is worse with depression. Small things knock me out, like putting the dishes away, turning and lifting may lead to a knot. I have used my mother’s cane, When I use the cane, strangers will assist you which helps on a bad day. I cancel appointments all the time. It is just too hard to get ready, drive, and come home. Luckily I have a community cleaning lady and CMHA has helped with a support worker. It has been a hard go since 2005. My husband left me, and I had to put my last Labrador Retriever down. I have lost friends, my land and my house.

I have tried to commit suicide,and have been admitted 2-3 more times-so yes it has been hell. Help is there but it takes patience and time to find the right fit. I hope my story is of help. I know it has helped me realize that I have made head and I have. I have filled the page. I hope this has helped. It helped me to realize I have made headway.

Dianne
U.S.A.

Keli’s Story

Keli’s Story

Hello!

In 2006 someone filled my shoes with concrete and threw me into a tank of jelly – so I have to drag myself around slowly whilst constantly fighting oxygen as if it were made of lead.

I was a busy, active, healthy 31 year old with a demanding job and hectic social life. I was happy, healthy and loving life. Then in 2006, in what felt like a flash, I was ill and my life changed.

It started with what felt like constant trips to my Doctor, despite hardly ever needing to go before. I’d go each time with a long list of ailments and come away with random drugs each time – none of which ever worked. After a few weary months and a noticeable decline in my health, I started to self-diagnose using the internet and eventually went back to my Doctor to tell him I thought I had got thyroid issues. My own Doctor was on holiday and a new Doctor was covering his work. She was literally a saint and saved me (physically and emotionally). It was this Doctor that went on to diagnose the ME and signed me off work for 3 months. She was so positive and seemed to know so much about ME that I felt finally believed and supported.

I look back at the point of being diagnosed and wonder how I managed to function. I was a zombie, in pain, in depression and desperate. The migraines, lock-jaw sensation, swollen glands, sickness and exhaustion were the main symptoms and almost paralysing.

A few years on and I still have ME. However, I am much ‘better’ than 2006 and do manage to work full time and look after my family. It isn’t without challenge and there are sometimes tears of frustration. I am constantly tired, but don’t give in and push and push through the fog. The migraines and sleep pattern have been made HUGELY better by a medication called ‘amitriptyline’ – which I started in 2008 at 175mg. This drug isn’t without its own horrible side effects, so I have found with a good diet, sensible life style and good support network I have been able to reduce to a lower dose of 25mg

More recently I have become curious again as to other symptoms of ME as I found my old symptoms (Migraines, sickness, sore throat, lock jaw sensation, dizziness) are better than ever, but new ones have replaced them! I get terrible pains in my stomach where the liver is. I have recently had an ECG due to constant chest pains (ECG clear), bowel issues and terrible skin! Great!

All in all, I feel I manage amazingly considering the wall of issues I deal with each day, but it’s not like I’m living a normal life and I often feel very bitter about the way I feel. But, I am petrified that if I stop for a moment and give in then I’ll be swallowed into a black hole and the real me will be lost forever.

I would love to be in a financial position to give up working and go live in Turkey (my husband is Turkish) because I feel so much better without the stress of work. In Turkey I’d have lots of sunshine , organic food, fresh air, supportive network and a sedentary lifestyle built around your own pace. I once saw a documentary about ‘locked in syndrome’ and I can honestly say that having ME is like having a version of that! You are the same YOU, have the same dreams and desires but suddenly you can only do what a 120 year old can do and at a slower pace!

I live in hope that one day a cure will be found and it will be like someone can flick a switch and bring me back again. The real me, who I used to be and not the woman currently being controlled by ME who moans a lot and wants to scream HELP!

Keli

New Zealand

Lesley’s Story

Lesley’s Story

Walk Just A Little with ME ...

I thought that if I just waited a little longer and focused on being patient, that our medicos would have it all worked out. So I waited and kept my trust in the learned world of medicine.

And I grew weaker and sicker

I comforted myself by thinking that everything was being done behind the scenes and that in time an answer would be found …and so I waited.

I couldnt physically endure my early morning beach walks anymore or my evening aerobics to the incredible Annie Lennox.

I encouraged myself to be patient and wait

I look out my windows at home and watch the birds and the trees blowing in the wind. I sit in my car parked at the beach and watch the sea and ships in the shipping channel and daydream myself into the picture of a day on the beach. I wind down the window and breathe in deeply. Happy but sad.

The isolation of this disease knows no bounds and reaches into every facet of my life, making me aware with a clarity that defies questioning that I am in this on my own.

All sufferers Are.

So what has this disease that has bypassed the rigors of biomedical research and jumped straight into Guessiatry and Thinkology – taken from my everyday life?

My ability to study at University;

My Physical strength and dexterity;

My ability to earn a living;

My chance to create personal wealth within a free enterprise system;

Holidays;

Family outings;

Dining in restaurants;

Shopping for birthday presents for my family;

Going to the hair dressers;

Being at school presentations when my children receive academic awards;

Walking down the street to get the weekend papers;

Walking the dog;

Generally being free to create a life of my own design.

I am housebound. Sometimes couch bound – Sometimes sleeping days away. No not depressed. Just too weak to function like a physically healthy person can.

Lesley

Liisa’s Story

Liisa’s Story

I always travelled by bike everywhere. I enjoyed concerts, being politically active, camping, dance, gymnastics, my work, playing guitar, painting, cooking. I was the only kid in my whole public school that got the ‘Award of Excellence’ for physical fitness.

I have a history of travel in India, South America, North America, Europe and the Caribbean. In India, 1996 I came down with an un-diagnosed malaria-like illness, gastroenteritis and four flus. I think this set the stage for decreased immunity and gut problems although it didn’t hinder me that much with my activities.
Upon my return to Canada, I had my amalgams removed by SW who did not use any precautions, and had me swallowing and spitting out hunks of mercury fillings when he was done. He now denies I was ever his patient. I have only received one vaccination past age 10 – for meningitis – forced upon me at school when I was 19. I believe all the above came together to burden my immune system, setting the stage for what was about to appear …

On New Year’s Eve, 1997 I was in NYC eating Indian Food at some joint on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu. However, I sensed it was somehow different. It turns out it was, as it never resolved. I was 26 years old.
Within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 93.3) about 3 times over. Within 5 months I became unable to work as co-owner of Canada’s largest health food co-operative, nutritional consultant/herbalist, and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, though I felt ‘wired’ all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway and showed up at doctors’ appointments on the wrong day. In 2001, I lost my father, my home, my insurance income, my cat, my vehicle – all within weeks, but I remained stable, functioning at about a 5/10.

I did not want to be back living with my mother, and I wanted to pursue my spiritual path in a more focused way so I signed up for a 6-month stint at a Tibetan Buddhist monastery in Cape Breton, NS. Then 9/11 happened and I started feeling worse, but I was still determined to go … It was perfect and I loved everything about it, though I was having difficulty with the daily schedule. I was told that I should leave to benefit my health. I was stubborn and didn’t want to hear it. I was undergoing immense stress from just trying to cope enough to stay.
Some of us, including myself, came down with a wicked flu. After this flu my neurological problems started happening in a severe way with increased sensitivity to noise, inability to book a hotel room, etc. Somehow, I made it back to Toronto in 2002, not well at all. I had an MRI: negative for MS. I had an EEG, which caused a seizure and dirty looks from the lab tech, but showed ‘no epilepsy’. I moved in with my aunt and uncle in the country but got much worse inside of 2 months, I believe, due to the 2 cell phone/radio towers that border their property.
I couldn’t speak much; couldn’t listen to speech or music, and started having seizures provoked by overstimulation (e.g. someone whistling, or hearing a radio play). My uncle drove me to Toronto to see my ME specialist in May, where I had a seizure from people talking in the waiting room. I then ended up at my mothers’ by default, bedridden. I tried to walk, but my whole body became spastic. Within the year I became paralyzed.

I have spent 97% of my thirties bed-bound. From my own experience of ME/CFS, I would describe it as feeling like I’ve been hit by a Mac Truck, the worst case of the flu, and 20 cups of coffee while having been made to stand for 3 days straight after running a marathon, without being allowed to sleep. For a few years after diagnosis, I was moderately ill, and unable to work but able to go to restorative yoga, drive, take a few vacations, go for short walks and take care of myself. I did all the right things and yet things went downhill. At my very worst, I was totally paralyzed for 8 months, unable to speak or put a few words together in my mind. I couldn’t process any incoming sensory stimulation, so nobody could talk to me. I was in the most unbelievable neurological pain, convincing me that hell realms existed and that I was in one. Opening my eyes to look at a blank wall was impossible. My brain hurt and my body felt crazy, like all the subtle infrastructures suddenly went haywire. I recalled the story of a guy who took 100 hits of LSD and was tripping for a year. His life sounded like a wonderful dream compared to mine.

I remember trying to look at the clock beside my head, trying to take my heart rate for 10 seconds as it echoed in my pillow, but it was impossible. If I ever needed to dial 9-1-1, that also would have been impossible. Liquid food was poured down my throat, running down the sides of my face as I couldn’t use my facial muscles properly to manage a cup or my hands to wipe it up. I was given nutritional IVs, yet they made my blood sugar rise to levels that only diabetics can achieve, and I’m not diabetic. I was constantly fighting to get enough ‘food’ into me to keep my blood sugar from dropping. I knew the strain of hypoglycemia on one so weak was serious. The last time my blood sugar plummeted, the stress caused a huge crash which resulted in my inability to stand up anymore … followed by the paralysis of my legs … followed by the paralysis of my arms. Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether.
I wasn’t able to have my hair washed anymore in the bed sink; nor was I able to tolerate having bedsheets or my top changed. My mum yelled at me because I stunk. She used to throw my 85-lb. body onto the commode beside my bed until a bladder infection relegated me to the bedpan.

I motioned to the scissors with my eyes (a major feat) and had my mum cut off my hair, as it was too heavy on my head and caused distress. I hoped the OT, nurse or doctor would figure out to flex my feet to avoid the excruciating ‘foot-drop’ that occurs when movement in legs is lost. But they didn’t. They also didn’t inform my mother that I needed ‘turning’ every 1 1/2 hours to avoid extra pain.
I had a wash twice a week through a community caregiving service. I stunk because I could not wipe myself after using the commode, and I did not want my mother doing it. When I had my period, I just bled onto a ‘blue pad’, but didn’t receive any extra care to clean me up. I felt gross in every way imaginable. I waited through unbelievable pain each day for the night, when I might get a short reprieve and sleep. My mother and close friends thought I was dying. I felt I was. My quality of life was in the red. It was an effort just to breathe, get food down my throat and land on the commode.
In 2005 some grace entered my life. I was put in hospital, treated for a bladder infection with Macrobid and somehow I stopped crashing. I was relieved to be away from my mother, who was not coping as my caregiver. Slowly I could move my toes and hands. Then I was able to get a kleenex out of the box and blow my nose. My speech was weak, but it started to return. I became able to chew certain foods.
After almost 3 months of physiotherapy. I was able to walk up to 24 meters once a day (on a good day) with a walker if I spent at least 20 hours of the day in bed. I was transferred to a rehab hospital (big mistake, but the ‘rules’ required it), and started going downhill because I was ashamed to ask for help when I needed it and my physician there didn’t believe that ME/CFS existed.
The psychiatric doctor from the previous hospital was not helpful. Everyone who didn’t know me thought I was lazy and choosing to ruin my life by not being able to get out of bed except for the 1-2 hour a day I would sit in the wheelchair.

One day, some installments and major cleaning were being done in my hospital room, leaving it with an unusual and extremely strong chemical smell. This VOC exposure caused a major crash, leaving me unable to feed myself, brush my teeth, stand, walk or talk. I was devastated. Yet, the doctor told me I didn’t walk because I didn’t want to. The Patient Care Manager forced ‘tough love’ on me, telling the patient support workers not to feed me or brush my teeth. I just had to force myself to do it. Politics played in here, as she let it slip that she couldn’t get the Patient Support Workers (PSWs) to do certain tasks, so I’d just have to do them myself. Finally, when my Care Manager was away on holiday, my friends spoke to her replacement and she demanded the PSWs help me with tasks I could not do myself from that day forward.
They eventually moved me to the Long Term Care floor of the hospital for residents awaiting transfer to nursing homes. I was the youngest one in the history of that unit at age 34. Here, the PSWs would not let me sleep, as they owned the rooms and saw fit to party, gossip and use their cell phones in them all night long.

In the morning, I recognized one who was whooping it up in my room the night before, and asked her why she wouldn’t let me sleep. Her response: ‘Life’s a killer, baby. These people, yawl just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody.’ After the myriad stresses of 20 months in the hospital, the stress of not being allowed to sleep was too much. I did not have the energy to even receive a wash. My adrenals were totally exhausted.

In November 2006, I left in an ambulance without being discharged to save my life, once again ending up at my mum’s. The hospital kept calling, asking my mum to bring me back, if not to stay then at least so they could discharge me. They just didn’t get it. If I had to be moved one more time in that shape, that would’ve been the end of me. Bureaucracy always trumps patient well-being in the health care system, so I understand their efforts at trying. Too bad they didn’t understand why I refused.

I have recovered some, but at a pathologically slow pace, encountering many set-backs. I have not been able to stand up or sit up independently since 2005. Now it is 2011. On good days, I can use the computer, read, meditate, chew certain soft foods and feed myself. Sometimes I can brush my own teeth, which is a pleasure I cannot even begin to describe. I use the bedpan during the day and diapers at night. I still cannot sit up independently, stand up or walk. I can’t tolerate movement, so I’m not able to be transferred into a wheelchair, or to go outside. On bad days, I can’t roll over in bed or speak.
I have caregivers through an agency, although find many of them lacking the necessary skills to take care of people in my situation. The system doesn’t have the money to pay for workers with skills. It is a job in itself being very severely ill and having to fight the system for the basics of care at every turn.

One day I will write my story the way I want to. Until then, thank you for reading the first draft.

Liisa

[Ed. Note: I have no update and although Liisa gave permission to publish her whole name, I have eliminated it until I hear from her. ln]

Carolle’s Story

Carolle’s Story

Note: My story as it relates to FM/ME is likely not very different than others who suffer from the same condition. Therefore, I have chosen to focus on what has seem to work best from me during the past near 20 years in hope that others may benefit

I have suffered with fibromyalgia which quickly turned into Chronic Fatigue Syndrome, since the mid 90’s. As a result of a physical shock to my system (aggressive laser treatment for varicose veins), I developed fibromyalgia. I was fortunate to be referred to various specialists who all concurred with the diagnosis of FM. My symptoms at the time were similar to those of my brother who had a rare form of muscular dystrophy. Only with the help of a very supportive husband did I manage to continue working for about a year. It was very difficult for me to give up on volunteer work, family activities and social events, even with my husband taking care of everything else!

One afternoon while at work, in addition to feeling exhausted and in pain, I felt as if I had a cold/flu coming on. The next morning, I felt paralyzed. I was unable to move even a finger. Talk about being scared! Days turned into months; pains were intense and fatigue was extreme. I persevered in my search for solutions and treatments that may alleviate the symptoms so that I could return to work. It was a slow road to improvements … “baby steps”, kinesiology, pain meds and other conventional and alternative therapies, all with varying success. After five years, I had no choice but to accept my medical pension. My quest to find ways to improve my quality of life never cease!

I am taking the time to write this note in hope that you may benefit from my trial and errors and success in trying to manage my condition and achieve a better quality of life. This is a chronic illness so you need to learn how best to manage. It will not go away but you can certainly live with much less pain when you succeed in managing it. There is hope!

Getting sleep is number one priority, even if it means taking sleeping pills for a while (Trazodone seems to work for me and do not leave me in a fog in the morning). Once you regulate that, you may be able to only repeat them for no more that about 2 weeks at a time…. This gives your body a chance for restorative sleep without getting dependent on pills. A bedtime ritual of bath and relaxation usually helps relieve stress and pain. Add a cup of Epsom salts and half a cup of baking soda to your bath to help reduce pain… pine mud baths work wonders but are much more expensive. Relaxation CDs, soft music are helpful as well.
Tu bouges ou tu rouilles! No kidding, it is way too easy to not move for fear of aggravating the pain. However, that only makes matters worst and you may end up in a wheelchair. So make it a point to walk around and stretch from morning to night. Apply ache cream such as Rub A535 (odorless) to help reduce the pain and gradually increase your level of activities daily. However, do not push yourself too much at one time. More frequent activities spaced out throughout your day are better. Pace yourself and you will enjoy every moment much more.

Reduce your stress by simplifying your lifestyle as much as possible…. That’s because worries and stress aggravate symptoms. That’s where your family support comes in. You all need to accept that life will never be the same, but that doesn’t mean it’s not a good thing. Life has a way of throwing us curbs … I believe that a healthy dose of reality is often key in making the necessary changes in our lives so that we may in fact have a better future. What does it mean? Do more with less. Look at every aspect of your life and aim to minimize and do only the absolute necessities (that may mean curtailing some activities, downsizing to reduce financial burdens and maintenance). ..It’s amazing how we tend to accumulate things and how we cram our space and our time.. Again, be selective in what you choose to do and to keep. The most important thing is those who love you. So take time to discuss what changes need to happen in your lives so that you all benefit.

Surround yourself with supportive mechanisms to ensure better mental and physical health. That means that your family doctor needs to be there for you. ..You must insist on being referred to specialists, rheumatologist, neurologist and any others that can either rule out other causes or concur with the FM diagnosis. This is of utmost importance since you may be unable to carry on with a normal work week and/or should you apply for CPP disability. Also, there are many support groups out there should you find that additional moral support is necessary. There are also various organizations that deal with chronic pain management and they may also be able to offer you some assistance. Just Google the subject and you are sure to find helpful information. Alternative medicine such as acupuncture and massage therapies can also be helpful during bouts. However, they do tend to get expensive, especially if you do not have insurance. . Physio helps as well and I have had success with IMS (Intra Muscular Stimulations) which are painful treatments that seem to relieve much local pains after only a few sessions.

Generally, I have found that doctors easily blame FM and Chronic Fatigue Syndrome for any other ailments that you can experience. It is therefore very important that you insist on the necessary testing to ensure that your body is otherwise healthy. Fighting the bouts of FM are enough for your body to deal with without having other ailments taxing it.
Try to stay away from Ibuprofen or other anti-inflammatory drugs or more than the occasional alcohol as they will likely end up causing mega digestive problems. Again, try to manage your pain with a more holistic approach that includes better nutrition, regular exercise, stress reduction, ache creams and bean bags (the type you heat up in microwave). Dress and cover up to reduce cold and humidity which as you no doubt know can exacerbate fibromyalgia symptoms.

Take care of you health as it will allow you to enjoy life to the fullest!

Carolle