I'm new to this I was wrongly diagnosed with Polymyalgia Rheumatica and put on steroids for 18 months by GP then referred to Rheumatologist who told me I have RA after bone scans etc . I take Methotrexate Sulphasalazine and Hydroxychloroquine and have just weaned myself off the steroids. I am still in a lot of pain, have trouble sleeping and feel very low thinking this is just what I just have to put up with now. I also take Citalopram. I don't seem to get any further with the consultant who last time reported back to the GP (not to me)he thinks I have fibromyalgia as well. Has anyone else experienced this? Thank you
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Joang
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Sorry to hear you're having such a bad time, but welcome anyway. 🙂
In a bit of a rush at the moment, but when you say 'burning sensation' do you mean a sort of hypersensitive patch of skin that hurts when it is brushed or subjected to heat / cold etc?
If so that is a common symptom of fibro and is called allodynia. It can range from unpleasant to excruciating and can also be part of lupus, neuropathy or one or two other things.
It's difficult to describe but when I turn in bed the skin on my hips feels as though it is being ripped off as it rubs against the bed sheet-it seems to go in stages and doesn't happen all the time but I think it is associated to the times when my hips are painful-does this make sense?
Weirdly enough it makes perfect sense as I have recently started to experience precisely that on my hips. It feels like it's in the skin itself, but there is no redness / rash / swelling at all. It's one of those invisible pains that nobody can comprehend unless they've had it unfortunately.
I've got RA (which isn't one of the conditions it's associated with) but I have had both hips replaced, although years ago. More likely for me I think is neuropathic damage caused by multiple prolapsed discs in my spine / stenosis / scoliosis causing some kind of nerve damage. I really ought to go see a doctor. Again. 😀
They can prescribe the usual neuropathic pain drugs such as Pregabalin, gabapentin and Amitriptyline for it, depending on how much of an issue it is, but I've just spent the last 2 years weaning myself off Pregabalin and would really rather not go down that route again (didn't agree with me when I forgot to take it in a massively bad way). Some people however do get good relief with these meds.
Other suggestions are to experiment with different types of fabric for bedsheets and clothing, avoid tight fitting waistbands etc. It seems to be one of those highly variable pains that is triggered by different things for different folk, some find heat / cold triggers it, others touch and others pressure. Or any combination of all three.
I would definitely see a doctor and feed it back to your rheumatology team (do they have a 'hotline' you can call?), as it may help diagnose fibro - if that's what they think is causing it.
With regards the other pain and lack of sleep you again have my sympathy. Sounds like you are on fairly comprehensive 'triple therapy' for your RA. Don't know how long you've been on that for, and I'm sure you know, but it takes time for the full effect to kick-in. I was on MTX for 4 months and felt no difference and then literally overnight I suddenly felt heaps better.
If you have been on them a while and are still not getting any benefit then let rheumatology know that also. The more you tell them that you are struggling the more they will have to consider your treatment regime. If you don't let them know they will just assume you are coping.
I was wondering if you ever learned of what was causing the burning/tearing pain you described? It is exactly what I have been feeling when I turn over in bed (began a few weeks ago) and is now happening at other times of the day as well. It’s point tender on the outer right “hip” area (where my jean rest), and I have been struggling to explain it and also figure out what is causing it. Thank you!
It isn't uncommon for Rheumatoid Disease to start with symptoms that are typical of Polymyalgia Rheumatica and for people to go on having muscle symptoms afterwards, especially if they transfer onto DMARDs and come off the steroids. So it can be complicated and not very easy to make a clear diagnosis of one or the other. And I always feel that it doesn't matter to much as long as the correct treatment is given.
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