Today I met a wonderful physio, who for the first time in my life recognised what could be causing my pain. My muscles don't relax after being contracted. They stay tight long after the exercise or movement has been completed, despite me being in a physical and mental state of relaxation. This explains a lot!
My EDS consultant, Dr Cohen, thought it may be beneficial to have trigger point therapy on my neck as I suffer with very painful muscle spasms. The physio I saw today found a trigger point and tried to release it but she noticed that my muscle remained tight, and it was still tight several minutes later.
At this point I explained the problem I'd been having with my hands. A couple of years ago when I was investigated for Chiari malformation (which thankfully I don't have!) I showed the neurologist how if I grip something tightly my hand doesn't let go. She didn't know what it was but later wrote to my GP saying it was myotonia, which was a rare complication of EDS. I later discovered that it is not a complication of EDS and I asked for a referral to see Professor Mike Hanna at NHNN in London at his Muscle Channelopathy clinic. I have an appointment there next month.
Because my muscles do not relax properly the physio thought that trigger pointing may not be so beneficial so she showed me an isometric exercise for my knees to maintain the strength. It was a simple exercise that I had no trouble completing but after doing it the physio noticed that my muscle was still contracted. I was laying on my bed, comfortable, warm and safe, physically and mentally relaxed but my right thigh was tense. The penny dropped. This is why I feel muscle pain around my joints. The muscles aren't behaving as they should and that's probably why I'm ending up with trigger points which cause even more pain.
We had a great discussion about what I can do to help myself. I've always found heat beneficial so the physio recommended using hot baths and my wheat bag for relief. We also discussed the possibility of muscle relaxants. I have a prescription for diazepam for my neck spasms but it's only for occasional use as tolerance is an issue with diazepam.
I always get confused about the conflicting advice I've been given but the physio told me I need to put the past behind me and start looking after myself. I need to be more aware of my posture and avoid hyperextending and subluxing my joints. I also need to be aware of how activities affect my pain levels and not push myself to the point of pain. I'm not doing myself any favours my running myself into the ground.
I asked the physio what could cause my muscles not to relax properly and she said it could be fibromyalgia. I told her about my argument with a rheumatologist who dismissed all my complaints as fibro and told me to take gabapentin and do more exercise. She said that gabapentin and pregabalin won't help me because I don't have nerve pain and that exercise doesn't help most people with fibro.
I now understand a little bit more about the cause of my pain it's all starting to make sense. For many years I have described my pain as feeling like every muscle in my body is tense, even though I am relaxed. It's taken over 20 years for someone to pick up on it and I'm very glad they have. I understand now why the rehab course at Stanmore make me sicker, not better. The physio said that stretching would not help me, you can't stretch tight muscles, it would only stretch the already weak and over stretched ligaments and would provide no benefit at all. My goal now is to listen to my body and not push it to the point of pain because I that will only lead to more trigger points and more disability.
So now I have a good excuse for taking a nice relaxing bath - on doctors orders! :)
