“Meghan’s” Story

“Meghan’s” Story

Thought I would share a summary of what has recently happened to me …

Since the month of March, I was feeling more and more exhausted, and did not know why.  I was also increasingly out of breath from very little exertion – like just walking across a room!  Unbeknownst to me, my auto-immune system was attacking my red blood cells, and was killing them. 

The way this progressed is a case study in incompetency …

  • In October 2018, the rheumatologist I was seeing told me my red blood cell count was 132(this is within the normal 130-140 range)
  • When I saw him in March, he showed some surprise that it  had  gone  down  to  112,but did not seem alarmed and simply said “we’ll keep n eye on it”
  • He did send a note to my family doctor about it, but she took no action.  I actually had to finally go see her to try and find the cause of my exhaustion.  That is when she clued in to the red cell count results she had seen from him and had me go for another blood test to see where it was at now. At that point the number was at 73
  • That meant a 40 point drop in just 2 months!  This was no ordinary anemia – something very strange was going on!
  • But even then, my GP did not react immediately like she should have.  When she got the “73” result, she had her receptionist call me and book an appointment for 5 days later, so she could tell me this in person!  Turns out, those 5 days could have lead to disaster …. 
  • When I went to see her, 5 days later, she said that what was happening could lead to total heart failure, so she was urgently referring me to a haematologist.
  • The haematologist received my file the very next morning, and had me come in immediately.  My blood was tested again, and in the space of a week, the number was now 59!  She told me in no uncertain terms that I had to get to emergency immediately, because I needed an urgent blood transfusion to stop the destruction.
  • It seems that 70 is the critical cut-off point – anything below that can lead to fatal results.  By the time I got the first transfusion in the ER at the hospital, my number was in the low 50s!  I had no idea that, by then, all my organs were getting less than 40% of the oxygen they need to function, because of the extremely low red blood cell count.
  • While in hospital, I was followed by 3 teams:  Internal Medicine / Haematology / Rheumatology  –  all trying to determine exactly why this happened.  I had transfusions and have been given some very powerful medications that I have to take for a while.  The transfusions themselves were very risky for me because they had to match the anti-bodies in my blood, and there was some trouble finding the right blood.  The wrong anti-bodies would have spelled disaster.  However, the right anti-bodies could also spell disaster, because they could have joined up with mine and started to multiply exponentially, which would have spelled mega disaster!  So it was an iffy proposition, but the only way to try to turn things around.
  • I spent 4 days in the ER section, which was pure hell.  The chaos and activity around me nearly drove me over the edge, and I did not sleep even 5 seconds during all that time.  I did threaten to just leave and go home, but they warned me that such a decision would be fatal, so I stayed and continued to beg to be moved to a room.  That finally happened later that day.
  • I was released from hospital last Thursday evening, after nearly 11 days there.  I am still pretty weak and shaky and facing a long period of recovery, but at least the crisis is behind me.  I cannot believe the number of medications I will need to take for the next while, in order to re-stabilize my immune system and make sure it does not return to killing off my red blood cells.  
  • At least now I know what symptoms to look out for if things start to get worse again.  I had no idea how close I got to total heart failure or coma, until they kept telling me that over and over in Emergency!  
  • For the foreseeable future, I will be followed by a haematology team on a weekly basis, so they will surely keep an eye on things, checking my blood levels constantly, so things will be under control.  
  • The recovery promises to be a slow one (so they all say) but I have taken the first steps and it will be all uphill from here on.  All the meds are the biggest challenge – I have never taken more than one or two, and now I have an arsenal of medications to deal with (here’s hoping the lists of side effects do not rear their ugly heads in my direction).   Until my immune system rebuilds itself, I also have to avoid contact with anyone who has the flu or any kind of infection, so that will be a challenge considering all the hospital and doctor visits in my near future.
  • Oh, the joys of inheriting an auto-immune disease from my Dad!  My Dad had an auto-immune disease (rheumatoid arthritis) so I seem to have inherited the auto-immune gene from him, but in my case it attacked the red blood cells instead of the joints.
  • So, here I am.  Back home.  Happy to be out of hospital, but a bit frustrated that I really can’t do much because the whole things has totally exhausted every ounce of energy right out of me, and it will be some time before that changes. 
  • So that is the story.  Goes to show that you never know just how close you can get to the brink.  I certainly was lucky this time!  But I confess that I will be looking to change family doctors and rheumatologist – looking for someone who reacts in a more timely fashion to things going this whacky.

 “Meghan”

Canada

CANADA-WIDE request for ACTION

Myalgic Encephalomyelitis Association of Ontario (MEAO) and

National ME/FM Action Network

Request Release to the Public of the Final Report of the Task Force on Environmental Health.

Denise Magi, President of MEAO, was one of the members of this Task Force and at one point the Report was on hold due to the provincial election.

Denise Magi advises that the Final Report of the Task Force on Environmental Health was presented to the Ministry of Health and Long Term Care by December 21, 2018 and the Task Force mandate was completed.

Denise Magi is given to understand that Minister Christine Elliott and her staff have been focusing their agenda on the creation of a proposed Ontario Super Health Agency and there has been no communications forthcoming to MEAO on the outstanding Final Report for release and implementation.  

HOW YOU CAN HELP:

  • Contact your local MP urging the release to the public of the Ontario Task Force Report on Environmental Health.

PLEASE Note: This report is important as the information contained therein can then be shared with all provinces and territories so that time can be saved in implementing this Report into action.

This is the first Task Force set up directly addressing Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and Environmental Illness (EI).

For information on MEAO, please see:

Email: info@meao.ca    www.meao.ca  

Tel.416-222-8820   –  Toll-free 1-877-632-6682

Sincerely,

NATIONAL ME/FM ACTION NETWORK

Lydia

Lydia E. Neilson, MSM

CEO, Founder

LINDA’S STORY

I was finally diagnosed with CFS/ME, after almost 5 years of being very ill all the time and not knowing why. 

I had to go on long-term disability insurance (LTD)  2 years ago. I have since done extensive research into this disease and realized how incredibly serious this disease is.

I am astounded and very disappointed that our Canadian medical system has been so short-sighted in recognizing this disease and collaborating with the researchers in the United States and elsewhere that have already achieved great advances in understanding this disease. 


There seems to be very conclusive evidence that this is a mitochondria dysfunction disease that does not allow our bodies to convert the food we eat into the energy our bodies need to function. It seems this happens most often after a serious flu or virus, which is what I experienced. 

Because of the limited understanding and scepticism of the medical professionals we rely on to diagnose, I was considered to have a sleep problem for which I should recover from?


The LTDI insurer ordered me to do water physio three times a week and see a Psychologist once a week (this was after their own Psychiatrist advised them that I had no Psychiatric issues and just needed to sleep). 

Fortunately for me, the Physiotherapist in charge of my water therapy listened to me when I told him that any exercise or just simple things like walking from the bedroom to the kitchen made me weaker. He measured my muscle strength throughout my entire body before I started the physio and advised me that where in most cases I should be exerting a pressure of “60”, I was exerting a pressure of “6”. He then measured again after two weeks of exercise and found that most of those measurements became even lower. 

I pleaded with the insurance company to stop this process and they were refusing until both the physiotherapist and the Psychologist both advised my insurance company in writing that I should stop the physio and the counselling as they were making my health worse.
Because they found I had severe sleep apnea, the insurer assumed that was the end of the story and I would be well again. Unfortunately, the sleep specialist had to show that even with a CPAP machine my condition would not improve, which required me to adjust to a CPAP machine which took about a year and then do another sleep test. It was after the second sleep test that the diagnosis of Chronic Fatigue Syndrome was made.


The whole last 5 years I have been telling doctors that I am weak all the time, don’t sleep, feel worse after exertion of any kind and a myriad of other changes and symptoms, yet it took 5 years and many judgemental people (non believers in the existence of Chronic Fatigue Syndrome), before I received a diagnosis. I am still having to deal with case managers at my insurance company that you get a sense they don’t believe your diagnosis. What a deplorable system.


I nearly lost my marriage of over 40 years and am now almost always housebound. Though I may sound angry here, I am hopeful and try every day to maintain some form of a normal life. I have learned to call a good day when I have enough energy to have a shower and cook a couple meals or do the dishes. I am fortunate to have a spouse that is now retired and supports me. I am also fortunate to have a LTDI plan that supports me so far. 


The worst part of this disease is dealing with the severely debilitating weakness and the frustration and anxiety of dealing with all of the disbelievers in the medical system and general public who still believe in Canada that this is more of a psychiatric issue than a real medical state of complete systemic disfunction.
I am grateful to people, such as yourself, who are out there advocating for education. 

Linda

Being With the Suffering Makes You Suffer Too

I lost my mom Rose to a formal diagnosis of fibromyalgia, many years ago. When she passed away, it had been 6 years since I had seen her, many Christmas days without her and times of celebration lost. Her condition of pain and swelling kept her from flying, visiting, enjoying life. I allowed the time to pass between us because life does that, it gives you permission to make excuses for being too busy or too stressed to be around family. I needed her and loved her but couldn’t spend much time with her before I felt overwhelmed. She was not able to be the mother I needed for support because of her diagnosis. She needed my help and support. I remember the call came that we lost her suddenly and I felt so guilty that I didn’t do more for her. I could’ve been there, helped her, made it easier for her. It wasn’t easy for any of us. We can’t forget her. Her heart attack most likely from lyrica or other pain meds is a tragedy. Being with the suffering makes you suffer too. The only way for me to live at peace with her condition would’ve been if there was a cure. I commend the doctors that promote anti-inflammatory discoveries. Dr Raymond Perrin, Yasmina, Dr Lapp, Dr Yasko, Dr Klinghardt, all genius contributors to the chronic illness field. May your work and legacy continue on much after you do, may you be recognised for your achievements in this lifetime,
may you accept my sincerest appreciation. Thankyou,

CL

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.