This spring, at my specialist's recommendation, I enrolled in a pain management program through my local hospital's wellness center. My requirements were that it would be non-invasive and limited pharmaceuticals - I admit I was very surprised to find that at a traditional hospital!
The program was supposed to start with an informational meeting, but due to time constraints and because I want to keep working and not threaten my employment status with frequent absenteeism I started with an orthopedic evaluation and physical therapy. The evaluation found bursitis in one hip which was causing a new onset of pain and weakness and, when my shoulder was moved the way he wanted, limited mobility in my previously "worked on" shoulder. Of course, if allowed to move the shoulder "my" way it has hypermobility. PT has focused on these two and not, as I wanted, all-over body strengthening to help manage the constant discomfort.
I still haven't had the informational meeting with the head of the program, but found out last week that was due to a hiking disaster she experienced and the program is slowly changing hands. Thus, I am fighting for my needs with the feeling of little support other than my family.
I pushed and was sent to a second orthopedist who is re-evaluating my short leg and scoliosis. If these have changed at all (which is likely, it has been about a decade since last evaluated but at that point both had been stable for about 15 years) then they could be the cause of the bursitis, limited shoulder mobility, and possibly other areas of pain. Won't know more about this until early September.
My goal with all of this is to reduce the amount of daily pain and numerous subluxations/dislocations I experience. I want to be able to keep on top of it and not be constantly surprised by new problems. I love my career, but know EDS is slowly making it difficult to work everyday and be effective at what I do. My hope was for the pain management program to help me organize it all and figure out who and what would help the best, but so far it is, yet again, me figuring it all out with almost no knowledgeable help from the medical community. This is extremely frustrating and I sometimes want to just give up, but I am still too stuburn to admit I am disabled.
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3 comments:
I also have eds, scoliosis and one leg shorter than the other! I find the combo with edsers seems common, do you ever find that you suffer autonomic or neurological problems? I have done paint programs etc and as always I find the same as with docs and physios it is hard to find med professionals willing to think outside the box; to treat eds patients you have to know all the ways our bodies break the rules and be able to think holistically ie aboout the whole body. Every weird syptom or mechanical dysfunction id linked and happens alongside others where the connections take some understanding! so one bit patched at a time doesnt really help my big picture..
anyways, best of luck with it all, really enjoy your blog, Emma x
pain programs not paint programs lol*
Hi Emma, I do have minor autonomic problems, primarily tremors in the arm attached to my "problem shoulder." Not much neurological, that I know of. I agree it is difficult to find professionals able to treat EDS patients - but it is getting easier for me. I have a specialist at a major research hospital, whom I meet with every few years or when a big problem occurs, and he helps me find specialists who can help and are willing to either educate themselves (sometimes through me!) or ask him questions so he can support them. It is so frustrating to meet with a medical professional who refuses to look at the whole picture and focuses on only one thing! But I am now confident enough to say "good bye!" and find another opinion :)
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