Pained from Cornwall

Xander

Hello everyone,

I’m Xander, I’m 51, and I have Hypermobile type Ehlers Danlos Syndrome, bilateral Hip Dysplasia, and Osteoarthritis pretty much in all my joints now.

Struggling so badly with limited range of motion and severe pain. I take prescription meds (is it ok to say which?), use heated wheat pads, hot water bottles, hemp gel, and the Pacing method daily. I’ve been in some pain since childhood but it’s really bad now and it’s beginning to get me down.

I seem to have a pattern with the OA, I wondered if others do?. It starts (symptoms) in one joint, then weeks later the same joint will start on the other side. It progresses quickly. The pain is awful for months, then it settles a bit unless I do too much.

My latest problem is my shoulders. There’s so much I can’t do now and it’s beginning to scare me as I live alone and am also a carer for someone a few hours a day. Not sure how I can keep it going.

Anyway, that’s me - I’m also a vegan, big soft animal lover, have odd music tastes and love watching motorbike racing.

😊

Ellen

Hi @Xander Welcome to the Versus Arthritis online community😊

I see from your post that you have quite a lot going on with your joints and have pain in very many of them. You say that your shoulders are causing the latest problem for you as you live alone and also care for someone.

I am so pleased you have found this community because you are not alone now; everyone here has Arthritis of some form or another, (including the Moderators) and we all understand pain. While you wait for some of or members to come along to share their stories I am going to attach link or two which might be of interest to you:

https://www.versusarthritis.org/news/2021/june/five-ways-to-help-shoulder-pain/

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-elbow-and-shoulder/

Now that you've introduced yourself you might like to have a look around the rest of the forum? Living with Arthritis is one of the most popular categories.

By the way it's absolutely fine to mention the medication you are taking.

Best wishes

Ellen.

frogmorton

Hi 'Pained from Cornwall' that made me smile.

Lovely to meet you. Sorry you have such a lot of pain. I love my wheatbag too. At one point we had 7 in this house as my daughter had avascular necrosis too (hip and shoulder). She ended up having hip surgery and a new shoulder joint by the time she was 19 so doesn't need them anymore.

We do say what meds we take yes that's not a problem, but we don't give active medical advice. Sharing our own experience is good it's what it's all about.

I wonder whether one joint on one side seems to follow the other because you unintentionally put pressure on the 'better' side so it has to have a turn?

I am also a vegan animal lover😍

Come along in and join us!

Toni x

Xander

Hi, thanks for your reply.

Wheatbags and hot water bottles are amazing.

Sounds like your daughter had an awful time, sorry to hear that!.

I have Osteoarthritis pretty much equally on both sides, it just seems to happen in this odd pattern with just a few weeks between one side and another starting, and is random as to which side is first. I wondered at first about whether I was favouring sides, but because it happens with such a short space of time between the two, I now think it’s just the way it progresses. I’ve come to accept now that it’s affecting my entire body as there are very few joints left unaffected. I’ve now been told it’s pretty much pointless me having joint replacements, and any recovery time would have a detrimental effect. The Ehlers Danlos causes rapid deconditioning with rest. So just trying to find any ways that I can to cope with it all really.

Always lovely to ‘meet’ other vegans 🙂.

frogmorton

It certainly is lovely to 'meet' other vegans @Xander life is getting much easier out there isn't it at least food-wise?😊

Sounds like you might be right about teh progress of your arthritis.

Would it be helpful to look at these search results for Ehlers Danlos?

https://community.versusarthritis.org/search?query=ehlers%20&scope=site&source=community

Might be useful maybe some of the members still post regularly?

I hope you'll keep posting this is a lovely community and we do all understand pain🙄sadly.

Take care

Toni x

Xander

Thankyou for that.

Yes it’s so easy being vegan now!. Very different from when I started which I think was 24 years ago now, eek!.

There’s something comforting in sharing the pain experience isn’t there, as it can be so hard to discuss it with anyone who doesn’t have to live with it every day.