Way before I was diagnosed with RD (although I had scleritis and was RA+) I would have days of great debility when I’d feel so weak and ill I’d simply have to lie in bed. My body would ache everywhere, I’d have a huge thirst, a headache, my brain would be muzzy and I’d feel so terrible I couldn’t even stand up.
When I was diagnosed with CD, they said it was that. Then hypothyroidism. Then antiphospholipid syndrome. Then RD. I’ve been diagnosed with RD for about 5 years now and am on MTX and Rituximab. But during the last few months these periods of feeling ill have all joined up and now I’m unable to anything other than lie on the sofa.
I do have a bit of a flare and there is some joint/tendon pain at various points, but nothing as bad as it has been in the past.
The main thing is I feel so debilitated and systemically ill and low. Like I am fighting a massive infection. I feel too weak to fight my way out of a paper bag.
My Rheumy said this isn’t part of RD and there must be something else wrong with me. My GP just says it’s RD.
Does any else with RD experience these symptoms of utter debility, but without massive joint pain?
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StormySeas
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Oh yes you've just described it perfectly I was on all the meds like you and I've been in the paper bag for ages on benapali its stopped now and I waiting to start rituximab do you think it's working for you I'm on antibiotic for nasty infection and I'm just feeling a bit better had steroids injection Friday 🤞🏻
Thanks for replying. Since RTX have not had an episode of PA that's been as bad as previously, but I'm struggling with feeling so ill all the time. I have had a few minor infections but nothing serious. Everything seems to hurt at the moment and I must admit I'm finding it hard to cope.
I've had really bad joint pain and very swollen hands wrists knee etc but the flairs are so dissabling I'm on strong opiates which help a bit but I just get so fed up and lm so pleased I joined this site as it helps a lot that others know and understand how nasty ra desease is it takes a long time to understand abt all the meds available
I was initially diagnosed with RD in 2011 after a longstanding diagnosis of Hypothyroidism. Then, after a few years on MTX and others I started getting a lot of systemic stuff occurring with no joint erosion, pain or swelling - but lots of pins and needles and flu like ache plus dry eyes and mouth.
I’m now diagnosed with Sjögren’s, possible MS or some sort of small vessel Vasculitis. I definitely feel worse than I was when suffering from the RD pain and my inflammation markers are going up rapidly and the pain is flu like or even like a migraine in my peripheries - but no arthritis of any kind to blame apparently. I get disorientated and struggle with vertigo and balance problems - my gait is strange with drop foot. So yes it’s very possible that you have comorbidities too.
Thanks for all that. It's quite complicated to get help isn't it, when GPs are sometimes not very knowledgeable and only have enough time to read your last page of notes.
How did you get referred for other tests? Was it via your rheumatologist or GP?
Yes it really is complicated - especially with a beleaguered NHS. I have relocated several times since I was initially diagnosed with and treated for RD. I have been sent for tests by rheumatology, gastroenterology, ENT, oral medicine and neurology, mainly through flagging things up and being persistent. We really have to learn to be our own advocates I find - nothing happens otherwise. If I hadn’t often obtained copies of my blood results for eg, then I’d probably have been told I had fibromyalgia rather than Sjogrens and now, Vasculitis.
Well done for what sounds like impressive persistance. Don't have the energy at the moment, but am aware it's exactly when you feel at your very worst you need to be seen...
Yes it is and do. Was also diagnosed with fibromyalgia then. Flare at present with all the symptoms you mentioned .. been in bed most of this week in the day but trouble sleeping st night.
Thanks. I've been mainly in bed/lying on sofa for almost 9 weeks now, though do have a knee problem too which is keeping me immobile. Do you have RD and Fibro? Nights are bad for me at the moment, hope you're getting better X
I don’t have Fibro - have Sjögren’s which imitated RD for five years or so then started imitating MS - and has continued to do so. X
I was very ill before DX but I had mental energy/interest in life, I noticed the longer it went on (along with rheumatic meds) harder it got. There is an established consensus that rheumatic illnesses hit post menopausal women much harder. We tend to forget but we do grow older, stronger drugs like that may, might have hit you harder than, let's say, someone, who's younger and better organ condition, that could filter the toxicity better.
Thanks for that. I agree, I'm finding it harder and harder, in fact at the moment I've pretty much given up. I so understand your comment about mental energy/interest in life.
That comment on toxicity is interesting; I'm not going to stop all my drugs but it's certainly something that I think about more and more. I'm only tiny, and I often wonder about the long-term systemic effect. Where did you read about the 'established consensus' you mention?
I saw it on one of the Arthritis newsletters. If you google it, I'm sure you'll find it. Maybe, you could ask your Rheumy whilst we often gather our "prognosis" without asking this question, directly. He/she should know. Thank you for your empathy. I hope you feel better soon.
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