This is my first time on HealthUnlocked. It's pretty hard to summarise what's been happening but here we go...
I am a 39 year-old woman with lupus (SLE) which is generally under control but I am being driven slightly mad by the inexplicable chest/back/shoulder pain that seems to feel better after releasing some wind!
I also experience breathlessness – the extent of this really depends on the day and I don't know what affects it at all. Some days I'm fine and can run and swim without issues and then sometimes I can't get up one flight of stairs without panting. Even bending over to tie my shoelaces is a mission.
I exercise regularly and maintain a healthy weight so I really shouldn't be struggling. I find exercise (boot camp or yoga) generally makes me feel better – if I'm not too tired to go. I've had pretty broken sleep since July as a result of the chest/back pain. I can't seem to find a comfortable position. It is something I've had on and off since I was 15 (it all started –coincidence?? – after falling and landing hard on my left side). I couldn't sneeze, burp or yawn properly for years.
As a result of not breathing properly I think I exhaust my upper chest muscles. Having said that, the physio doesn't think that these symptoms are all attributable to musculoskeletal problem. He mentioned that there may be some link between my digestion and the chest/back/shoulder pain but my GP dismissed this possibility. The physio also suggested costocondritis. My podiatrist suggested there may be a link between the oedema I often suffer in my legs. The GP has offered me antacid medication and amitryptaline. The lady who gives me acupuncture suggested fibromyalgia.
I can't believe after all these years of trying to find out what's going on I'm still none the wiser! I have been seen under renal and rheumatology departments for years.
I am also now trying acupuncture and Chinese herbs. And unfortunately having to take more paracetamol than I would like (which doesn't always get rid of the pain).
Involvement of my heart and lungs has been ruled out through tests – so why am I getting this pain and breathlessness?
If anyone has any bright ideas, I would be so grateful to hear them.
Thank you!
MeelyMc
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MeelyMc
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Welcome to HealthUnlocked, I hope you find this community full of information and support.
I'm sorry to hear that you are having difficulty finding an explanation for these symptoms. Have you discussed them with your rheumatologist at all, or just your GP and physio? What investigations have you had to look at your chest and test your breathing?
Did you discuss the Chinese herbs with your rheumatologist before starting them? It is important to discuss any complementary/alternative treatments with your medical team because they can potentially have adverse effects on your condition or interact with other treatments.
Thanks for your feedback. I have discussed to some extent with my rheumatologist but tend to have a more regular dialogue with my nephrologist. I've had x-rays, lung function tests and a couple of ECGs. I have spoken with the nephrologists about the Chinese herbs and they didn't say anything about them. I will take a look at the factsheet now. I appreciate you taking the time to reply. 😊
I too get chest shoulder area pain often, when i deep breath or lay on my left side is worse. Ibuprofin takes it away but usually have gas at the time mostly as well & have ruled out heart & lungs as well, doc dont seem to know, its getting frustrating though, i figure its my pinched nerve in my nexk or arthritis & wen i inhale it strikes the pained area i dnt know. Wish i had more but it can't be too bad because it doesn't get worse it's just very worrisome being that it's in the heart area, hope you find more answers if you do let me know thank you and feel better
Yes! I found the same. I could hardly sleep on my left side for years. And likewise, Ibuprofen seems to have the best effect but I have been banned from using by the nephrologist. Does your pain cause you breathlessness too? I sort of wondered if there was some connection with the nerves since the painful sensation can travel down my arms or up my neck. I hope you too find some more answers and if I discover anything useful, I will let you know. ✨
It seems no one is treating the whole person, but dividing you up into whatever their speciality is. What does your body say? I've been on the medical freight train going in the wrong direction and it is not only frustrating but dangerous. You might have done some real damage during your fall. From your description no one has a handle on your problem. I finally got fed up and started doing research, especially after one doc about killed me. Fixed myself! No meds. Doing great. Blessing to you and I hope you find the answer.
Tell me about it! That's why I like seeing the Chinese medicine specialist. It's so hard to know what my body is saying. I really wish we spoke the same language! How did you manage to fix yourself? Glad that you did!
Hi I can sympathise with all of that ..I have shoulder problems and my hand doesn't work middle finger useless .had a nerve test done on Sunday . and now waiting for an appointment for a MRI scan in the next couple of weeks .he said I have a problem with a nerve in my neck . which is why I get headaches and my arm And hand are numb broken lots of mugs! . outcome if they find it is either injection but because it is bothering a lot he said they might operate didn't ask how that works was pretty depressed at that point . would just be nice to go to appointments and they find nothing with you !!! Its frustrating . hope all goes well .x
Oh no, that doesn't sound good at all. I do get a bit of numbness in my fingers but assumed that was down to poor circulation. Fingers crossed you won't have to have an operation but either way, I hope they're able to fix it for you. I will definitely ask my consultants about the possibility of nerve involvement. Thank you 🙏
Whatever you do - don't take iboprofen - or any of that class of pain killer (NASAID's ?) - if you have Kidney problems !!!!! Don't even look at them.
Also - please don't plunge into taking Amitryptaline or go for a Fibromyalgia diagnosis. (It really really really really doesn't sound like Fibromyalgia to me) Acupuncturists shouldn't be giving medical advice to an SLE sufferer.
You have SLE Lupus ! Make sure all SLE bases are covered !
I'm the very last person on earth to ever agree with anything a physiotherapist has to say about anything - but I currently do have some digestive problems that they're trying to get to the bottom of - and I also have upper side & back pain with it. (have kidney problems also)
I cant be sure about whats going on with me yet - but a recent reduction in Micophenolate helped my digestive issues a bit. I'd suddenly become a bit reactive to the stuff.
I'd really get to a specialist about these problems. SLE does effect the digestive system - so it should be taken very seriously. Also - a re - check of what your kidneys are doing is always a good idea. I'm obsessive about it. I harass my specialist/kidney Doc. on average - almost on a fortnightly basis. (High loss of protien problem at the moment)
And please please please - if you're having oedema problems - speak to your nephrologist - not a podiatrist. A podiatrist might have a good idea's about postural things - but with SLE you cant take the chance when weird things happen. Especially with the pain you're describing.
I've also had costocondritis (cracked sternum from a car accident) I tend to have an odd rotten patch of it - ie weeks (sometimes months ?) and then it leaves me alone. It does hurt like a heart attack though. Makes it painful to take deep breaths. But to be honest I don't think it would cause you to have some days when you can exercise and others when you cant climb stairs ? I really think this is a symptom for a specialist.
(A lot of people at this site has suffered from costocondritis - It might be worth looking at some older posts about it)
Sorry if I've been a little full on. But my deranged motto is - if in doubt - get to a specialist !
Thank you Freckle1000, I appreciate your candid reply. I'm not taking ibuprofen any more you'll be pleased to hear. The nephrologist has outlawed it! And I'm really not keen on amitryptaline so won't go there either. I am seeing my rheumatologist at the beginning of March so will make sure I have my questions poised and ready. I'll see the renal team in January again but it's probably closer to a rheumatology question. I'm fairly light on medication at the moment as they had to stop azathioprine due to plummeting white blood count – only taking plaquenil and aspirin at the moment. They're talking about mycophenalate but as we're trying to conceive I keep pushing back on that. Rituximab has been mooted and dismissed and they've mentioned intravenous immunoglobulin – I'm rooting for this having had it and then had almost no symptoms for 10 years. Anyway, I digress. I think I should push for more clarity on digestive issues. Kidney function is looking OK at the moment and has been for a while. And I do get the oedema checked out with the nephrologist every time. I think really, the main take out here is that I shouldn't let it lie and need to be pushing a little harder to get the answers. Thanks for the encouragement. I'm very grateful for your feedback. 😊
Medication is a tough one to balance - especially with the white blood cell problems.
Thanks for telling me about the intravenous immunoglobin ! Sounds like good stuff.
I come from Australia - and my specialist is a Nephrologist/General specialist cross breed. I've actually found him very handy at managing my nebulous mystery internal organ type SLE problems. Hence I harass the poor man all the time. (Had a scorching experience with my last Rheumatologist) So I'm probably a bit too hyper - vigilant.
X
Please - also - stay away from a Fibromyalgia diagnosis. Even if you have it - its best not to have it on your medical record. Some really poor quality doctors can use it as an excuse to fob you off when you're flaring.
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