The pain

[Ninaninuzz]

Hi All,

I was wondering if anyone had tips about dealing with pain caused by hypermobility syndrome?

So I was pretty active, doing CrossFit, Pilates (I find yoga makes it worse) and my physio therapy. But the last weeks it seems like it’s just gone back to square one. I had physio for my knees but the pain now has become worse in my hips, wrists, shoulders everywhere. Mainly when I am sleeping (or not because I am in agony) I can’t get up and down from sitting position. I can barely walk when I get out of bed, I can barely climb stairs. Everything was going so well, but now, I am just so done with it. Even my hands and fingers hurt now, the pain can become so bad that it will seem to make my joints switch off completely, like just lose feeling and function and go dead which I don’t think is normal?

It’s also incredibly frustrating how no one seems to understand this is real, I’m 31 years old and have the arthritic and stiff body of an 80 year old I feel. People think hypermobile and assume I can basically move like a contortionist (I wish) it doesn’t feel this way lol.

Advice would be useful thanks!

You think it’s worth going on to any medicine or maybe even go back to the doctor for more physio?

[Jay66]

I take tramadol - one a day - which takes the edge off the pain and means most days I can get on and not think about it.

It does not affect fatigue either one way or the other though.

I used to find that strength training helped - maintaining a strong core. But it won't work by itself. There is no magic pill to cure pain - you need to layer on different things which will take away a percentage of the pain, so that together they deal with most of it.

Like - hot wheat bag - 5%

pilates/strength training - 15%

opioid pain meds with paracetamol - 40%

Then you are up to 60% and that is pretty good.

[cyberbarn]

It is possibly that people with EDS get osteoarthritis much earlier than others. OA isn't 'wear and tear' and old age, it happens when there is an injury in the joint, and the balance between maintaining cartilage and wearing away breaks down so that more is worn away before new cartilage can be made. So if someone has EDS and has micro tears and other joint capsule damage, and also has the genetic predisposition for OA, they can end up with symptomatic OA at a young age.

The expert researchers are also realising that it isn't just the wearing away of cartilage, it is a problem with inflammation as well.

So physio might be good, but it needs to be the right kind, that is the kind that isn't going to make things worse. Same with all the other activities that you do.

And just a tip, if you are going to try paracetamol which is the first line treatment, you need to take it all the time, not just when you hurt. It works better that way.

[Myflexiblefriend]

We had to change physical therapists to find one who had a better understanding EDS/HSD and was willing to learn. This one is far more careful to avoid injuring my daughter when introducing new PT. He started her with aqua therapy which made a big difference for her knees. He has also helped her shoulders. The previous PT group was just less experienced - fine for a normal injury but nowhere near careful enough for this. On the other hand (excuse the pun) the normal hand PT thwy prescribed has made a big difference for her hands. Individualized yoga lessons with a very experienced teacher who is willing to read and learn about the issues has helped her back. But as you report too, she has pain in many places and none of this is a permanent fix. The key is daily practice of the PT/yoga routine for each body part. Accupuncture/energy healing has been helpful as well. She occasionally takes naproxen. We're just learning by trial and error.