How does lupus joint pain feel?: Hi everyone. I've... - LUPUS UK

LUPUS UK

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How does lupus joint pain feel?

Thereisalight
Thereisalight

Hi everyone. I've been a bit away from the forum for a while trying to fucus less on "negative" things (disease related stuff) to keep me positve. Being diagnosed with an auroimmune disease is quite stressful! But i do keep an eye from time to time and it's very interesting what you guys post and really hopeful to see the support you all offer each other. As mentioned before i'm postive for anti ro but i've only had a suspected skin rash so only been diagnosed with Undifferentated CTD so still unsure what this means to me long term. However since then i feel my body has just not been the same. First I had what i suspected as LPR but discarded as not having it as PH test said no acidic reflux showed up although another gastro doctor said i could still have reflux just not acidic. Anyways whatever i had was caused mostly by dairy so now feeling better in that respect. But after 4 years of looking after kids in a super tired sleep deprived state i felt i needed some excercise so i started yoga at a gym. A month later i got burning pain in my buttocks at times but especially when sitting until sitting became unbearable. Been seen now by 3 physios. 1 said SI joints as positive for at least 2 stress tests for si pain but excercises not helpful and refused manual manipulation as he could hurt me because of my connectibe tissue diasease(?!?!), the other said prob posture so after 2 hourly back stretching for 2 wks and posture change i feel worse. She now says it's not msk as there is nothing wrong with me and to see rheumy... recently gp did inflamation marker blood test and came back as nothing. All other standard bloods came back normal. So this is all to ask what does your joint pain feel like? Is it constant or certain moves make it worse. I thought it if was lupus like it would hurt at all times? Not just get worse when i sat? Seeing my CTD doctor (a dermatologist but it's not my old lovely one and he's not too interested so not sure what he will say). Trying to see msk consultant privately now for second opinion too as dont want to take meds unnecessarily for just an injury. How do rheumys know if the pain in joint is lupus caused or due to injury? Are there any tests or imagine that they do? Many thanks in advance!

7 Replies

I had severe sacroiliac pain which got so painyi could only walk short distances. I had a guided steroid injection which really helped and i have only had twinges of that pain occasionally . I have Sjögrens and when I asked rheumy about the joint and muscle pain I experience she said autoimmune disease can make you prone to inflammation, unfortunately ☹️

I know re inflamation. I've so far been mostly symptom free (well mostly not serious stuff so this is scaring me a bit!) Glad the injection helped. Private physio cant figure out what is causing pain yet. She reckons there is sth wrong in my pelvic area but has not confirmed SI joint pain etc

Thank you to all of you who have replied. Sorry for my delayed reply.My issue with the type of pain I have is that it seems to follow no pattern. Some days it's not too bad but just a few flashes of burning pain, other times I can sit for a long time with no issues, sometimes the buttocks and thigh area becomes really uncomfortable and makes my whole middle region feel weird. I just don't know if lupus pain is there all day or if it goes sometimes etc. I get the odd stabbing pain that lasts a few seconds in fingers or toes but that is not too bad and I can live with it. Struggling to sit is debilitating. Private physio is treating me and giving excercises but no improvent so far. After first visit i had like 3 days pain free nearly but this second week has been so far pretty rubbish. I'm worried the ever changing pattern of pain means it's something autoimmune rather than muskuloskeletal...

At its worst, and especially during the night, mine feels like a nail being hammered into each hip then the base of my spine.

I get the bottom pain a lot. Going over a speed bump in a car or taxi is really bad. If I go anywhere where I might need to sit on something hard for some time, I have a thin portable seat cushion I take along ( plently on Amazon). If I'm anywhere I don't know, and am asked to take a seat, I've learned to look back to gauge the height of the seat so I can gauge how fast to descend.

Are you very slim? I'm underweight and sure if I had more flesh on my bum it would help. I do my physio exercises, which are quite like practicing at the barre for ballet. No help, but keeps those tendons flexible

Thank you to all of you who have replied. Sorry for my delayed reply.My issue with the type of pain I have is that it seems to follow no pattern. Some days it's not too bad but just a few flashes of burning pain, other times I can sit for a long time with no issues, sometimes the buttocks and thigh area becomes really uncomfortable and makes my whole middle region feel weird. I just don't know if lupus pain is there all day or if it goes sometimes etc. I get the odd stabbing pain that lasts a few seconds in fingers or toes but that is not too bad and I can live with it. Struggling to sit is debilitating. Private physio is treating me and giving excercises but no improvent so far. After first visit i had like 3 days pain free nearly but this second week has been so far pretty rubbish. I'm worried the ever changing pattern of pain means it's something autoimmune rather than muskuloskeletal...

Hey there lovely 😊

Would just like to make it clear I haven’t had a diagnoses yet but the GP is convinced it’s either Lupus or Rheumy. Seeing a consultant in Jan so full steam ahead but I can honestly say I can tell you what my pain feels like. It depends how tired or emotional I am because the pains can feel different. I really agree with Lupiknits about the hammer and nail. Sometimes I feel like it’s as if I have the worst tooth pain you could ever feel, but in my hips. Sometimes it’s like someone is putting an electric shock through my fingers and back. Sometimes it feels like a pulsating energy (a bad one obviously). Those are my main ones really. I hope it’s helped somewhat dear, I hope you have a beautiful day 💖🌟

Thank you to all of you who have replied. Sorry for my delayed reply.My issue with the type of pain I have is that it seems to follow no pattern. Some days it's not too bad but just a few flashes of burning pain, other times I can sit for a long time with no issues, sometimes the buttocks and thigh area becomes really uncomfortable and makes my whole middle region feel weird. I just don't know if lupus pain is there all day or if it goes sometimes etc. I get the odd stabbing pain that lasts a few seconds in fingers or toes but that is not too bad and I can live with it. Struggling to sit is debilitating. Private physio is treating me and giving excercises but no improvent so far. After first visit i had like 3 days pain free nearly but this second week has been so far pretty rubbish. I'm worried the ever changing pattern of pain means it's something autoimmune rather than muskuloskeletal...

Thank you to all of you who have replied. Sorry for my delayed reply.My issue with the type of pain I have is that it seems to follow no pattern. Some days it's not too bad but just a few flashes of burning pain, other times I can sit for a long time with no issues, sometimes the buttocks and thigh area becomes really uncomfortable and makes my whole middle region feel weird. I just don't know if lupus pain is there all day or if it goes sometimes etc. I get the odd stabbing pain that lasts a few seconds in fingers or toes but that is not too bad and I can live with it. Struggling to sit is debilitating. Private physio is treating me and giving excercises but no improvent so far. After first visit i had like 3 days pain free nearly but this second week has been so far pretty rubbish. I'm worried the ever changing pattern of pain means it's something autoimmune rather than muskuloskeletal...

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