Ehlers Danlos and Tendonitis, shedding some light on the situation
I am a 37 year old mother of 2 who has Ehlers Danlos which is a connective tissue disorder.
From what I understand, I have faulty collagin which makes me super stretchy and doesnt hold me together correctly. My muscles have to work extra hard just to hold me in a somewhat normal position because my joints allow me to go way farther then they should. Everything goes too far.
Chiropractors are somewhat affraid to mess with me anymore which I found really wasnt good for me anyways...except for serious dislocations.
I have had arm dislocations as a really young child, broken wrist and elbow and as a youth, knee cap sliding to the side catching me off guard and bringing me flat on my bottom often, and alot of back pain starting in my early 20's.
Now, as a 37 yr old I am experiencing all sorts of disomforts. This week's new issue is my shoulder. I believe it started from me laying on it wrong while I slept. I had it folded above and under my pillow...perhaps too far. It burns, has marbled pain, and does not go as far as normal and when I try it hurts like crazy. The pain keeps me awake.
I assume this is tendonitis. An orthopedic (who really doesnt know what to do with me) says I will get tendonitis often with my problem in many areas of my body. He is right as I get similar pains to this in my wrists and feet etc.
I just finished physical therapy and phonoporesis on my hip for what he said was thought to be ITB of the hip....also bursitis. The PT showed me particular stretches they would normally give someone with this problem but tells me she doesnt know if that is good for me because I'm already stretchy?
The phonoporesis helped but not completely and it is coming back since I am not having it done any longer. I just wish I could go for walks again.
You need to walk to do everything. I am fine for a minute but after that my hip tightens up and by the time I take a 15 minute walk or just go up several stair steps, I am limping and it is burning, clicking and pinching etc.
I am just wondering what can I do for this all?
I try to strengthen by doing simple things like the teeny Wii fit stepper but that hurts shortly after begining. I need to loose a little weight but find everything I do causes a new issue (primarily catches and my ribs getting in bad positions poking and making it hard to breathe.)
To stretch or not to stretch? I am confused with what is good or bad for it since I am different then most people. If I am super stretchy, is it good for me to stretch more to keep from getting things like this or will stretching just make my stretchyness worse and worse? I have problems with my neck and my back is literally a mess. I know that my future doesnt look so hot and it is depressing.
I just cannot find anyone that will look at my issue as a whole and will help me. According to them I need to see a different Dr for each individual part of me that hurts, and even then....they shy away because they are unsure of the whole situation. I'm hoping you can shed some light on what might be good for me since you know so much about something that effects my whole problem. Tendons, Ligaments, Muscles.
I have asked till I'm blue in the face at Physical therapy and the situation just confuses them. They are not sure if heat or ice, or stretching or not is good for me. Any suggestions is GREATLY appreciated.
Thanks for sharing and asking. As you say, with Ehlers Danlos Syndrome your future doesn't look so hot. From what you say, I'm inclined to agree with you.
Having said that, there is a lot you can do to HELP your body work with less pain and . I don't think there's a fix, or a remedy to reverse your hypermobility. That means we have to work with the body intelligently to do everything that we can do to help you to not only function well/optimally, but to counteract the continual damage/irritation your body experiences.
As you know, with an issue like Ehlers Danlos, the structures that usually hold the joints together are VERY loose. Stability that others take for granted is not an option for you.
This means that minor and major dislocations are common, that bones float too far from each other, that structures that should be solid and supported when performing activities like walking, etc, are neither solid nor supported.
Let's look a little deeper at how this relates to chronic pain and increases in chronic pain.
Let's look at 3 factors:
1. Every time a joint is overstretched, depending on your specifics, the ligaments may or may not take any damage. They may or may not get overstretched and irritated.
Let's just assume that they get irritated.
2. Every time you take a step, your bones probably rub on each other way more than they should. This sets up a Process of Inflammation and could be causing actual damage to the joint linings.
3. The nervous system DOES NOT LIKE the sensation of pain, irritation, or danger. Your nervous system is CONSTANTLY reading signals of each.
If you sleep on your side and your shoulder is pushed too far out of joint, held there only by too stretchy ligaments, the nervous system is going to read, if not pain, DANGER and potential pain. IT responds the same, regardless.
The Pain Causing Dynamic consists of increasing tightness and pain (primarily from the pain enhancing chemicals released by inflammation).
I doubt that you have Tendonitis per se, but I'm positive that you have a tendonitis dynamic, but really more an issue of 'ligamentitis' and 'jointitis'. Meaning, inflammation and irritation of the ligaments and joint surfaces themselves.
I don't think you have to worry about muscle tightness, so much. It would be interesting for me to feel your muscles and see what state they are in.
(Continued in PART 2)
Joshua Tucker, B.A., C.M.T.
The Tendonitis Expert