HomeAnswersPhysiotherapyehlers-danlos syndromeI am suffering from EDS hypermobility. What should I do?

How can I manage chronic pain and fatigue due to EDS hypermobility?

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The following is an actual conversation between an iCliniq user and a doctor that has been reviewed and published as a Premium Q&A.

Answered by

Sreenivasa Rao

Medically reviewed by

iCliniq medical review team

Published At October 4, 2023
Reviewed AtOctober 4, 2023

Patient's Query

Hi doctor,

I am a 19-year-old female, and my weight is 112 pounds. I have EDS hypermobility, for which I take Co-codomal daily at 60 milligrams. Even though I take these painkillers and use knee, wrist, and hand supports, I am still in constant pain. I have a permanently subluxated shoulder on my left, which means I cannot do strenuous activity with my left arm or hand as there is no strength. My right shoulder also does this, but it does seem to go back into place, but it still is very weak. I get fatigued so easily, which means that I have to lie down a lot, as well as when my hips sub lux and I am unable to move, which causes my muscles to deteriorate. It also causes me to have back pain and sciatica. This condition affects all my joints, but the symptoms and affected areas fluctuate. I used to have lots of pain in my feet that was fixed with shoe inserts ass. I had flat feet caused by my knees pointing inwards rather than straight in front, but my knees still have great pain. I had physiotherapy for about a year and a half, but this did not help me; if anything, it damaged some of my tendons further, and we both decided it was not worth it. I do not know what I should do from now as I do not want to increase my dose of painkillers as I already take 240 milligrams on a bad day. It makes me even more tired, but the pain of my condition means it is very difficult to sleep, and I take an average of 4 hours of interrupted sleep per night. What should my next steps be?

Thank you.

Answered by Sreenivasa Rao

Hi,

Welcome to icliniq.com.

I have gone through your query and understand your problem.

You have to accept that you have Ehlers-Danlos syndrome (EDS) and have to deal with it.

The next thing is I learned that you had physiotherapy earlier for your problem but have yet to help you much. I recommend you start very mild stability exercises to keep your stability and balance among the joint muscles.

You can go with minimal weight or bodyweight exercises that would not harm your tendons. Keep exercises simple so that too much complexity can be brought in when you are ready to do that kind of exercise.

You should have a good nutritious diet and maintain good weight. Do have regular checks with the doctor. Do try some ice packs for pain relief.

I suggest you do very simple exercises like.

Keeping your hand straight and pulling the humeral head towards the socket will help stabilize the shoulder joint. You may have your hand supported during this exercise.

Lifting your hip up and down by pushing through the heels and squeezing your butt muscles.

You can do push and pull exercises with a thera band of low resistance. It can be done in sitting. The back extension can be performed. Lying on your back and holding your hip and knee at a 90-degree will help strengthen your core. Let it be held until you feel comfortable, which can be for 5 or 30 seconds. It is up to you.

Hope this is helpful for you. Try to do these exercises, and please share your feedback. So that we can modify or completely change any of the exercises or step these exercises to a complex level if needed.

Do get back in case you need any further help in this regard.

Thank you.

Same symptoms don't mean you have the same problem. Consult a doctor now!

Sreenivasa Rao
Sreenivasa Rao

Physiotherapy

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