This is not medical advice.
I first started seeing patients with fibromyalgia in the 90’s. Back then there was an industry rumor that this diagnosis wasn’t real, and that people were exaggerating their problems.
I tended to believe that, being newly graduated, with very little rehab work experience, and I was in my 20’s.
Over the years, I’ve changed my mind. I realize this is a real diagnosis, and people have real problems. There are some common characteristics that I’ve witnessed. I am not saying this is definitive, just relaying what I have witnessed.
Common characteristics
What I have witnessed is that all of the fibromyalgia patients were;
female
had general muscle weakness
little to no exercise history
poor tolerance for exercises
emotional problems or history of abuse
tender upper back and/or neck muscles, frequently with '“knots”
frequently on medication, especially muscle relaxers.
Sometimes these patient have been overweight, however I have also seen some patients who are very skinny, so I do not think weight is a common factor.
Treatments
I’ve always been a huge proponent of some kind of exercise or physical activity. So I was determined that I was going to be able to help people. I always took a compassionate route, regardless of what I might have believed or not believed.
You really need a certain amount of treatment buy in with any case. In other words, patients need to trust the rehab person or understand why we are doing these exercises, and want to get better.
I quickly realized a few things. These cases were ok with hot packs. Fair enough. I don’t like to waste time with something they can do on their own, but we tried to warm up on an exercise machine while wearing the hot packs.
I really like massage for these cases, however it was either too painful, even gently, or the patient only wanted to do these two things.
I knew they weren’t going to get better without some exercises, because they were in this spiral of pain and inactivity.
No cases had any interest in even the most gentle of muscle strengthening. I never felt like things were going to improve.
Emotional problems
The number one factor that sticks in my mind is emotional problems, and or need for psychological counseling. This is not meant as a disparaging comment. The only way to get better with any diagnosis, is to find the root cause, and for everyone to be honest.
All the patients had this in common, and I think this is what is the root cause of their physical pain. My impression is that these issues need to be addressed, or progress made here first, before musculoskeletal exercises will help decrease pain.
So what is fibromyalgia then?
My impression is that people in this level of emotional or psychological stress hold more tension in their upper back and/or neck muscles all day. The shoulders are slightly elevated. It doesn’t take much to fire some muscle activity. It’s likely that people are unaware that they are even doing this in the first place.
There are theories that people “hold” stress in their tissues. I am trying to explain a physiological reason that this happens.
Muscle tissue likes to either contract, or completely relax. Holding tension or contractions all day can cause pain. Some of our postural muscles were built to accomplish this. We need a certain amount of muscle tone to sit or stand up straight, and to hold our joints together. I don’t think our upper trapezius muscles were meant for this kind of all day tension. That is the most frequent location for muscle knotting.
Long standing emotional stress causes these upper back or trapezius muscles to never relax. In response to this extra workload, the body adds scar or fibrous tissue to try and hold the elevated posture being requested.
I don’t think this is proven, just my theory. This can be a hotly debated and emotional topic. People are in pain, and either the industry is not helping them, or doesn’t believe them.
Medication
I have never had a fibromyalgia patient come back and say that they were cured or pain free from their medication, especially muscle relaxers. One of the reasons people are in pain is due to weakness, so it seems odd that the industry prescribes muscle relaxers. I’m not saying people shouldn’t take them. I think that understanding the big picture is part of feeling better.
What should be done?
I have yet to have a success story, someone who came back and said they were completely healed. My impression is people need counseling first, and some progress in that realm. Heat, gentle massage and gentle exercises might help, but the underlying cause needs to be addressed first.