Just a quick question from me today, has anyone seen their joint pain really take a turn for the worst and not understand why? I’m currently experiencing really bad joint jarring, clicking and popping which is really really painful! Parts of my spine (upper and lower) have started to click randomly as well as my usual places which are:
Hips, ankles, shoulders, wrists and knees.
I keep getting intense pains and burning even though I’m not doing anything (still shielding due to methotrexate use) it seems I sit too long I’m in pain or I move too much and I’m in pain too - where’s the happy medium??? So I spoke to my friend who said about hypermobility and I wasn’t too sure what to think, my joints are really unstable (knees and ankles I’d say are worst) could she be on to something here?
I just want the pain to stop and know how to keep it under control rather than second guessing life all the time! If anyone knows anything that would help I’d really appreciate it, getting really fed up and down about all these illnesses now it’s just not fair 😞
Sorry for the rant!
Leenie x
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Leenie0811
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Hi I'm struggling like you for the past year and a half I feel like I'm deteriorating. My joint pain has been terrible really bad in my fingers, wrists knees, and elbows and I also suffer bad muscle pain in my upper arms. I had a brief blast of steroids in January which helped but since coming off them everything has come back. I dread going to bed as the pain is so much worse over night and in a morning. I've cried trying to move my joints and even had a time where I was dreaming I was I agony trying to straighten my legs then woke and realised it wasnt a dream. I also have a breathing issue and my fatigue is rock bottom. I feel so worn out nd upset with it ll. Working from home but work are now pressuring me to try a few days back in each week but I just dont know how I will cope.
I am so sorry - for both of you. Hhood I took a screenshot of your post and sent it to my husband because I could have written it. The night time paralysing pain, the breathing issues, the same joints, the dreams, the deterioration and the feelings around it. I even had a steroid boost that helped temporarily but like you it’s all back.
Like you they treated me for MS as well but that was negative. I’m curious about your breathing issues because rheumatologist seems relatively dismissive of mine. I have a lot of trouble at night and often wake with what i describe as choking episodes where it feels i have stopped breathing but it’s not recurrent enough for them to think it’s sleep apnea.
I don’t know what we are supposed to to about any of this and I’m not sure if hearing this helps either of you. But I wanted to say thank you for posting and somehow knowing I’m not alone made me feel better so i hope that’s true for you reading this.
Thank you for sharing I feel your issues with breathing too, I’m actually asthmatic so sometimes I get confused between that or if it is a new symptom as usually my breathing is set off by excessive activity which is something I can’t do at all at the moment. My chest becomes tight and I have pain on my sternum (think that’s the right word) basically where your rib cage comes together in the middle of your chest and you can see/feel the inflammation it goes kinda puffy but I’ve no idea what would treat it as my inflammation markers are always so low but I eat really well as I am 90% vegan (give into cheese now and again) I’m so glad we have this platform to support each other and I hope you feel some comfort in knowing you aren’t alone! Sending hugs! 💛
Sending hugs to you too. Just wanted to share that I have just been diagnosed with pericarditis after a visit to A&E. You might talk to your rheumatologist again about those chest issues?
Oh really? Yeah I think I will mention it to the rheumatology nurse I’ll give them a call tomorrow see if they can suggest anything, I’ve kinda ruled out my asthma and anxiety causing it because sometimes I’m waking up and it’s there. So sorry you had to go to A&E lovely sending you lots of well wishes and hope that they can sort something for the pericarditis x
You sound so similar to me it’s just so debilitating isn’t it I couldn’t imagine what to do in order to help myself anymore. Been trying everything but nothing seems to work, joints literally feel like they’re being held together by string they’re so weak these days and super painful 😞
I have had months now of extra pains in my shoulders (actually 3 years there) I haven't been able to lie on my side easily although doing some strengthening exercises in the summer has helped - I also try to sit carefully without pushing on them. Hands and wrists seem to be worse and now my lower back problems are giving me hip pains - again I can't lie on my sides at night so sleeping is more difficult. Walking upstairs is not my favourite past time either. Don't know if it is just a flare-up or worse because I had covid last March. What a rotten year for all but there is sunshine today so am looking forward and trying not to be glum.
Writing this has made me ring the Lupus Nurse - Thanks.
Glad you have managed to call the lupus nurse I hope that they can give you some kind of advice or treatment to help you not be in so much pain it’s so unfair so many of us dealing with these issues without answers. Thank you for sharing your story too I hope you can get some kind of relief sending hugs to you 💛
Hi, my hands have been really bad recently especially my right one. It used to be controlled with Hydroxychloroquine but am no longer able to take that. I am now on low dose steroids with dampen the pain down. Hope you find something that works for you.
Thank you so much I hope the steroids help you as well, it’s hard having all these symptoms all the time with no answers I just wish we could all get out of pain, this platform is so good for finding you’re not alone
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