Myofascial Pain Syndrome Support Group
Myofascial Pain Syndrome (or MPS) is a term used to describe one of the conditions characterized by chronic pain. It is associated with and caused by "trigger points" (TrPs), sensitive and painful areas between the muscle and fascia. The symptoms can range from referred pain through myofascial trigger points to specific pains in other areas of the body. It may be related...
I've been in a wheelchair full time for about a year and a half. Before that it was part-time with OTC leg braces (full length air casts) and OTC knee braces along with forearm crutches for support. I suspect I might have fibromyalgia too, but my current doctor doesn't feel there is enough support for it's official recognition and validity to make the actual diagnosis. I see a group of three doctors (they rotate on a home-visit schedule, and all happen to be related with the father-doctor being generally the best of the three and the two brother-doctors/sons-of-the-father being at varying aggravating states of incompetence) and have mentioned my suspicions to all three but the best I ever get is acknowledgement of it being "a real possibility". So fibromyalgia aside, I'm looking for anyone else out there with severe, widespread chronic myofascial pain syndrome that has left them wheelchair-bound. I feel like I'm some sort of freak of the diagnosis, an MPS anomaly. But it just kept spreading and getting worse for me sinc my diagnosis about 6 years ago. And it took around 3 years prior to that to even find a doctor who could and would make the diagnosis! So many doctors during those years just blew me off, or told me that my symptoms were too widespread and generalized for them to narrow it down to a single diagnosis, and then they would send me away and never even try! Others made like it was all just in my head. When a rheumatologist finally diagnosed me, I was still offered virtually no treatment. Minimal, short-term physio and a home exercise plan. Eventually it spread to affect most of my body, with my legs and back affected first and worst and finally it spread down to my arms so that use of the crutches I was dependant upon became impossible. Being in a wheelchair, and also suffering from Chronic Fatigue Syndrome and often being bed-bound from that has just degraded my muscles further. Nobody (any of my doctors) seem to know of or be able to suggest or provide and treatment, and because of the CFS physio at this point is simply impossible. But when I try internet searches they all make it sound like it should be so easily and completely treatable, and I can't seem to find any reference to anyone else or any other cases like me where the MPS has left the person completely unable to even stand on their own. Am I truly all alone in this???
For the last 12 years I myself have widespread trigger points in my back, arms and hips, and it continues to spread, but for me relatively slowly.
I doubt you haven't already heard but exercise and stretching are generally contraindicated for what I will call MTP (myofascial trigger points). As you have no doubt found, exercise and stretching can severely aggravate trigger points. On the other hand, I do mild exercise, because otherwise I become too weak to function, my joints suffer from lack of muscular support, and my risk of injury increases. What has helped my trigger points the most is the application of moist heat, massage by a highly educated therapist (trigger point "release" and deep tissue), gentle, passive stretching (such as lying on a pillow for thoracic extension), lots of rest and sleep, and oxycodone, which helps with relaxation and sleep as well as pain-induced diarrhea. My life is only a vestige of what it used to be, but I can still enjoy my family and I keep trying new therapies in the hope that something will improve my life.
From your description, the doctors sound like a real red flag. I think you need to see another doctor, if only for a second opinion. Though CFS can take years to diagnose, I would think fibro shouldn't be as bad, particularly if you have tender points. If you do indeed have CFS and fibro, you really need to find an exceptional doctor whom you have confidence in anyway, to help you manage your conditions. That would be my only advice to you at this point.
My MTPs in my thoracic back are severe and disabling, and they trigger heart palpitations when they get really bad. Those TPs are aggravated by being vertical (standing or sitting), so I can't sit in a wheelchair and I spend most of my time either in bed or on a massage table, where I can lie on my stomach (very important for my back) and use my smart phone. I imagine that for you even the wheelchair must be painful, and my heart goes out to you. I also have other problems like a really bum leg due to an accident, which someday I will lose to amputation, and since I can't sit in a wheelchair, I will then be bedridden.
I wish I knew anything else to say. Please know that there are others out here who do at least partly understand what you are going through, and please don't give up hope. Please keep trying new doctors and new therapies. You just might hit on a breakthrough.
Good luck.