There are times I wish every health care provider we deal with could actually put themselves in our shoes for a month to see how it truly feels to live with chronic pain on a daily basis. I bet if they were faced with the chronic pain and other symptoms that they too would have a difficult time finding the energy to take part in all the recommendations to decrease pain levels. When health care providers recommend these routes, do they stop to understand the whole picture? Or are they just recommending these routes because according to science it works? Most times I now take many of the recommendations as a “grain of salt.” If you haven’t heard of the saying ” take it with a grain of salt” it simply means to not completely believe something that you are being told. During early diagnosis, I believed what I was being told could fix fibromyalgia. I soon learned that this was not the case and my body does not respond well to many of the recommendations.
There have been many recommendations made to me that I should attend physiotherapy, massage therapists, and just learn to exercise more. I know health care providers mean well by recommending these treatments, but I know they don’t exactly understand how painful it can be for us who live daily with fibromyalgia. Adding chronic fatigue on top of the pain makes it very difficulty to find the courage to take part.
I recently started physiotherapy for osteoarthritis in my lower back. After assessment I felt it might actually be a great decision. However, after my third appointment, I found myself in a full blown flare up. After almost a week of increased pain levels and major fatigue I am second guessing myself. A treatment that was supposed to help relieve my lower back and hip pain has turned into widespread jumping pain down to the bone. Most times we are told to push through and it will get easier- in most cases it doesn’t get easier and we are left bed ridden.
I had the same experience when I attended a pain clinic and was working along side a kinesiologist. The basic stretches they gave me would send me into a complete spiral and I would go into a flare for days. After months of trying to slowly work stretches in without causing a flare up, I gave up. For myself the extra pain the stretches were causing was just too much to handle on top of my everyday pain I was dealing with.
Massage therapy is often recommended to help relieve fibromyalgia. I am sure there are many out there that find it helpful, but I do not think it is the right route for me to take. I have never attended a massage therapist, but even the slightest pressure to my muscles hurt me. I could not even imagine someone trying to manipulate my muscles to make them feel less painful. Even a muscle roller where I can control the pressure causes extreme pain to form.
Exercise! Don’t get me wrong, exercise is important, but it just isn’t as easy as it sounds when you factor in fibromyalgia. Is anyone else absolutely tired of being told to exercise more and fibromyalgia will get better? I was always told to get a gym membership and go to the gym, but reality is the gym is just too much for me to handle. They want me to use the treadmill to walk, but what they don’t understand is I can’t even walk fast enough on the warm up setting. A stationary bike was also recommended, but my legs burn so bad after 15 seconds of peddling and my knees begin to ache. When I step off the bike I feel like collapsing. I won’t push through because I will just end up in a flare.
I often wonder why certain routes work with some people and not others. Does it come down to how severe your fibromyalgia is? I know fibromyalgia isn’t exactly classified as mild, moderate or severe, but some of my symptoms over the years have gotten worse. I can guarantee it isn’t because I don’t exercise and move. My doctor always said some people recover fully from fibromyalgia with adding some exercise and lifestyle changes , some improve and then hit a plateau and remain there, while others get worse. After speaking to many people on numerous fibromyalgia support groups world wide, I now realize how true his statement was. He believed I hit that plateau. We exhausted all routes we could possibly explore – it has now been quality of life based treatments.