Hey, I made a post a little bit ago (month maybe) about Romanus Lesions. I've since had a clinic letter about it and it does say "early spondyloarthritis" as the cause of the lesions. Anyway, I'm waiting to speak to my GP, but is there anything I can do in the meantime to help myself with this? The pain I'm experiencing is getting worse as time goes on (this could be because I'm still recovering from an adrenal crisis though...).
Anyway, thanks for any help.
Have you been given any exercises from a physio? Certain excercises can help with the pain.
For my EDS, yes, I do them anyway daily as I have to or my joints dislocate more often than they already do! They're basically isometric exercises, but due to weakness/coordination issues (due to cerebellar atrophy) and muscle atrophy I'm quite limited still in what I can do.
I'm just concerned that waiting to see the rheumatologist will take even longer and things will get worse. Who knows how the waiting list will be! Guess I have to be thankful that it is early and therefore hopefully will still be okay by the time I see rheumatology, haha.
Ask your GP for a physio referral…or you can self refer…you will find the application form on line. I always feel better if I search out something for myself,,,,,even if in the end it doesn’t work…just sitting waiting is a No No for me.
Definitely will do, thanks for your help. Hope you're doing well!
I am still wishing I never had the Covid vaccinations…I was plodding along fine before I had them…,now my RA infusion didn’t work, & I have symptoms I didn’t have before- which I could well do without…but hey….I’m still walking & talking so I guess things could be worse ?😥Hope you get some help soon!
look at it this way AC you could have got COVID and not be here now to tell the tale! Glad you are still with us I enjoy your posts😊
Glad you enjoy my octogenarian rants ….I reckon I have had 20+ LFT’s…..all negative….so I think it just doesn’t like me! But today I actually did get some good news….I have been waiting (& waiting) for an MRI & an ultra sound & I was going to get them done privately as the NHS hospital Radiography Dept is so busy they are working on Sundays…..in today’s post I got both appointments…in ten days time!! Not perfect as on two separate days..but hey I’ll take them & say thank you! So they are looking after the oldies after all! 🙋♀️🙋♀️
Great news AC the NHS is determined to keep us going whatever our age😊
I have ankylosing spondylitis as well as adrenal insufficiency. I definitely recommend checking out the NASS website, it’s the charity fir spondyloarthritis. They have excellent stretches, and a BackToAction app with exercises too. Unfortunately stretches are an essential part of controlling things, and breaking up inflammation. Swimming is excellent for AS too. Avoid chiropractors or osteopaths as they can do further damage to your spine, especially if you have any signs of fusion starting or osteoporosis which is common in AS. I would get your GP to prescribe a regular nsaid to try, you need to try 2 at max dose before being considered for biologics. Although not everyone needs biologics or meets the strict criteria. Your mri needs to show significant inflammation. It’s important to get pain controlled as your probably aware pain eats away at your cortisol and can give you low symptoms. When I’m in a flare I often wake with the nausea, headache and lightheaded feeling and need to updose.
I'm really grateful to you for mentioning NAAS and their website. Like 91% of the population (I'm told) who don't know about AS, I didn't know that there's support for the condition - until today. Thanks 👍
Spondyloarthritis treatment
Early wednesday morning...
Early morning struggles
Suspected for early RA
