#rheumatic

[lovevampirism]

Since I don't have any other space to vent about this I'll post it here.

A few months ago I was diagnosed with fibromyalgia + had to test for some additional stuff. My deteriorating health was a topic of many jokes between me and my grandma for a long time - sharing gel for joint pain, painkillers and so on. Until I couldn't ignore it anymore and went to a rheumatologist. Many tests later she confirmed what she suspected at the beginning - fibromyalgia. I also started walking with a cane to support myself. Now, I don't think that all of my symptoms come from my fibro, but I had to take a break from all the tests and appointments. Might come back to this and make an appointment with a geneticist (I suspect a hypermobility issue).

I feel my mental health deteriorating as well. I realised I'm grieving my youth already and I'm barely 22. I had to take painkillers today just so I could get through cleaning my house. Every time the weather changes I feel it in my head, joints, muscles and back. I'm so tired of being in pain all the time. I'm constantly jealous of things people around me can do, but I can't anymore. It feels absolutely shit and as much as I manage to laugh about being 'crippled' on a daily basis, I'm so scared of my future.

Take care of yourself out there

[solarianvoidthearoace]

I’d like some advice about self-advocacy.

I’m in my mid-20’s and physically disabled but don’t know the specifics; I am German and live in Germany.

My major problems are my left wrist and my knees (right wrist to a lesser extend)

I have been wearing my wrist splint for months by this point (previously I only needed it for a week or so before taking it off) and I have been wearing knee compressions/ support bandages

I also bought myself a walking cane without officially consulting a medical professional

So now my question is: how do I self-advocate towards my general practitioner that these mobility aids get noted/ recorded in my patient file?

A friend of mine who’s a social worker suggested I just tell my GP “I have these and these issues. I started using these and these mobility aids to mitigate/ prevent pain. I bought and began using them on my own account. They actually help me a lot and make life easier. Write that into my file and then we talk about me seeing a professional about it.”

[chronically-online-anime-enjoyer]

I might get a mobility aid for my chronic pain condition. Does anyone have any advice?

(Sorry this is so long 😅)

I’m deciding whether or not I should get a rollator. I think it would really benefit me, I’m just worried about the stigma and public perception of it.

I’m just 19. I have rheumatoid arthritis, which makes my joints hurt from literally anything. My pain is mostly in my feet since that’s how I get around everyday. The constant pressure causes my ankle and toe joints to inflame and rub together and cause deterioration. I also have pain in my wrists, knees, shoulders, and occasionally my hips and back. I’ve had to end trips early and prevent both me and my friends/family from having fun. I can walk short distances, but if I know I would be walking for more than half an hour I just take a bus instead.

I would love the freedom of going to the zoo, the amusement park, the mall, and other trips. I’m just scared to ask. :<

I want to be able to take weight off of my feet as I walk. Especially since I’m plus sized, the pressure of standing for even 20 minutes is enough to make me wanna lie down or sit in a bath for hours. I want to walk more without fear of getting stranded and needing my dad to pick me up cuz I can’t walk home.

Even though a cane is smaller and lighter, I don’t think it would suit me bc I have weak wrists, and the pain is symmetrical across both feet and knees. That’s why I thought a rollator would be good since it’s also a portable seat so I don’t have to stand in lines or if I get really tired. (Way better than sitting on the sidewalk or floor lol)

I am also looking into smart crutches since they prevent wrist pain and they look a bit smaller than a rollator but I probably need the seat that a rollator would provide.

Does anyone have any tips for first time mobility aid users? And how to get over the fear of others opinions?

[christinziogrimmace]

Well I know there’s gotta be some people in the disability community on here, just wondering how many that are active that have a rheumatic disease (UCTD, Lupus, Rheumatoid Arthritis, Sjörgen, etc)

Hi I have Undifferentiated Connective Tissue Disease (UCTD) I found out just before the panini hit, I’m on hydroxycholorquine which helps me manage my symptoms *most* of the time but with the weather getting cold I’ve been experiencing a lot of pain in my leg joints especially my left knee. It sucks. I can only handle doing stuff on my feet for so long before I need to sit or lay down at this point.

[heardatmedschool]

“Dactilitis. Or, how you will probably remember it as, Sausage Toes.”

[yesyesyor]

Ich hasse meine chronische Erkrankung. Ständig muss man nach Hilfe fragen und das ist genau das was ich hasse. Wenn die Menschen in deinem Umfeld nicht sehen, dass es dir schlecht geht und freiwillig helfen wollen, wieso muss ich dann betteln ? Ärzte hasse ich langsam auch. So jung und schon so krank, dass man nicht mal selbst eine Dose öffnen kann.

[beautifulchaos917]

03/17/2020

Today marks 7 years since I first showed signs of RA.

[brightorangerain]

My rheumatologist thinks I have Rheumatoid Arthritis in addition to Osteoarthritis in my knees. Inflammation showed up on the bone scan in my shoulders, hands, wrists, & knees. All of my main complaints for the last 10+ yrs. He said I did the right thing waiting to have the carpal tunnel/torn ligament surgery on my hands b/c it's possible that if we treat the RA, the inflammation could decrease & improve function in my hands. I didn't have lupus or any other obvious autoimmune diseases according to the blood test. RA wasn't in the blood either but because I have so many issues w/ multiple joints, he said it is likely Seronegative RA. He's starting me on a trial of prednisone to see if that reduces inflammation.

So w/ RA, my body attacks my joints which makes them inflamed. This is completely different from OA, which deteriorates the bone & cartilage due to wear & tear. RA can affect many other areas of the body as well, including organs & increasing my risk of infection. RA can also cause many of the other conditions I've been diagnosed w/ also.

I finally got validation!!! There WAS something going on besides my SB & OA all this time. I plan on taking additional steps to improve my health in other ways also.