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Shoulder instability due to HSD

ZebraCDBZebraCDB Member Posts: 1 Listener
Hello,

I was wondering if anyone has any tips on how to cope with shoulder instability. My shoulders (especially my right) have started to pop out of joint more regularly and I find because it's my dominant arm it really is starting to impact my ability to manage most day to day tasks, especially driving which I won't do when they are this unstable due to safety issues.

I have been doing physio for years with no improvement, tape them, wear a brace and rest when they are bad but nothing seems to help any more.

Any advice on how to cope?

Replies

  • chiariedschiarieds Community Co-Production Group Posts: 10,089 Disability Gamechanger
    Hi @ZebraCDB - I'm very pleased to welcome you to the community as I also have hypermobility issues due to having Ehlers-Danlos Syndrome (EDS). I'm a physio, tho worked as such a long time ago. I knew I had joint instability, but didn't know why for a long time until I started researching my problems. I'm sorry physio hasn't helped, as this is my mainstay. However, unfortunately things worsened as I got older, despite appropriate exercise.
    From a personal perspective, I will say that I started taking CBD oil over 2 years ago for the neurological pain I also have due to another disorder, which can be associated with EDS. To my surprise, altho it dampened my neurological pain down a bit, I also started realising I was having far fewer subluxations/partial joint dislocations, & those I had were less painful. I wish I could guarantee that CBD would definitely help you, but as we're all different, I just can't say. At least it can help to reduce pain in a variety of conditions.
    If you would consider trying this, then please let me know, as I would be pleased to let you know where to buy from, & how to start taking it. I've done quite a bit of research into this too, & some people try too high a strength to begin with, or don't know how to take it, so conclude it doesn't work for them.
    Just to add, my instability is mainly in my right wrist, & both knees.
  • Kit_Kit_ Member Posts: 31 Connected
    Hi @ZebraCDB I hope you doing ok. Did you try the CBD? I'd be interested to know if it helps, I've only really seen recommendations from people who are being paid to advertise (apart from you, @chiarieds ). 
    I have HSD too and have found physio a bit hit and miss. Finding a hypermobility specialist helped but I also found it useful to do a pilates class with a more holistic-minded and sympathetic instructor who found ways to keep me moving without aggravating my pain. You can get into a vicious circle when you stop using your joint to avoid pain which then causes muscle degradation, so finding what you can do without pain and working within your limits can make a big difference. I had shoulder pain and issues which were actually coming from my upper back (which is where the "whole body thinking" helps) so sorting out those issues really helped with my shoulder. Unfortunately I've now re-injured my shoulder and it doesn't seem to be such an easy fix this time so I can imagine how you feel. There's no easy fix but an occupational therapist could help you reduce pain during day to day activities. In terms of pain relief the only thing I really find helpful is mindfulness (I can't take pain killers due to an issue with my liver) exercises like assigning a colour to each area of pain you feel can help to process pain in a calm way, there are apps or guided meditations on youtube that can help you, but I know that it isn't for everyone.
    I found that increasing my protein intake helped with a lot of my joint pain, I think I've seen a study about diet and EDS/HSD so that could be something you could look into.
    I think it's usually a case of finding small things that help a little rather than finding one thing that solves everything. It can be hard work and take a lot of research, trial and error, but when you find those little things that make life easier, it all seems worth it.
    Take care
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