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
