I've been diagnosed with SLE and Lupus Nephritis for some 10 years now and whilst my kidney problems have improved I have other symptoms which are getting worse such as not sleeping properly ( can't sleep longer than 4hours for about a year and a half!|)really painful muscles, tendons & joints, horrendous periods, brain fog which i struggle to remember what I was saying/ thinking and days were I feel mega low and weepy. I was just wondering if anyone has Lupus and Fibro or if these are just symptoms of the Lupus?? I'd be grateful if anyone could give me some feedback of their experiences please? Thanks!
liz
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frizzylizzy1974
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I've been diagnosed with lupus for 2 years and it's relatively mild i.e. not affecting internal organs apart from my bladder. I've been on Plaquenil for that time. Antibodies are going down, but I feel worse and worse - aches, pains, tender ribs, fatigue, exercise tolerance etc. Rheumy gave me a steroid injection and subsequently a one month course of steroids - made absolutely no difference. Therefore the presumption is that my symptoms are due to fibro rather than lupus. He now says I am doing well (in terms of lupus), but actually I feel terrible! He has upped my amitriptyline which has helped with sleep and getting moving in the morning. I'm getting a referral for hydrotherapy as well.
I know of several lupies (via Facebook) who seem to have similar experiences. If you read about fibro, it does seem to cover most of your symptoms - have you discussed with rheumy?
hi marypw thanks for your reply, i haven't yet discussed this with my Rheumy but am there next week so will give him my list of symptoms then, it is the not sleeping properly which I think really doesn't help , finding it very hard to relax all my aching muscles and then not sleeping properly ! I've done a bit of research on fibro and it really does sound like that although lots of the symptoms could be lupus too! but it does say its not uncommon for lupies to have fibro too! yes i'm on steroids at the mo but they don't seem to improve these symptoms either !
thanks for your reply it does help and I hope you feel some improvement soon best wishes
Hi Liz. I was diagnosed with Fibromyalgia 12 years ago, Rheumatoid Arthritis five years ago and more recently Lupus. The pain I experienced with fibro was pain like I had never known before and I was prescribed Gabapentin and Amptitripline which did help with the sleeping problems and the Gabapentin with the pain management. But I am finding the amtitripline is no longer helping with the sleeping aspect of things.( I do think your body gets used to any medication and after a time ,no longer works ) I was at my g.p. last week for my sleep problems and he reluctantly prescribed Temazapan ( sleeping tablet ) as a tempory measure. Not sure what happens after this. I do hope you find the answers you are looking for.Best Wishes.Maureen
Sleep disorders are very common with us lupies and if you can avoid taking more meds you should. There are ways of using you awake time to get good quality rest in the absence of actual sleep. The worst thing you can do is fret about it. i dont mean to sound trite, but I have had this for 20 years and more, sleep is key feeling well and functioning, But major trancs are a bad idea.
thanks for your reply Thaddeus despiite having Lupus for some years my sleeping problems have been relatively recent and I didn't quite appreciate it could be part of my Lupus, and i do fret about it which, you're right, makes it worse! thanks for your advice , best wishes
Hi Thaddeus - I agree with your warning about Trancs! Natural sleep is VERY important. I saw a Physio last week and she said that the symptoms of sleep deprivation are very similar to those of Fibromyalgia.....also that quality of sleep is more important than quantity. Although I seldom have more than 3-4 hours at night - I do have a quality "nap" in the afternoon, so don't think I'm deprived. I realise that this wouldn't be possible if I worked full-time...and so it must be a problem for those who do.
There are lots of ways to relax....and so this is preferable to getting anxious about not sleeping.......
I've got fibro as well - just recently dx - and found hydrotherapy works very well for me. I don't have a referral for it so well done for getting that! I used my friend's spa and found it helped a treat. So I had my bathtub replaced to one with jets. It cost very little more than a regular bath (I was replacing old bath in new flat anyway).
For sleep, i am given clonazepam but this is because i have Restless Legs and Periodic Limb Movement Disorder. It does not make me sleep right through the night every night, but helps. I would suggest trying over the counter sleep aid like Diphenhydramine tablets. In the UK it's called Nytol -- and you can try just a half a tablet to start and see how it affects you. It is actually an antihistamine which has sleepiness as a side effect so many OTC products have it such as Tylenol PM and similar. I find it can give a bit of hangover effect but certainly helps you fall off to sleep especially if you haven't had a good sleep for a while. I say use what works for you. Temazapam is not a "major tranc" as far as I am aware so that might be right for you even if it's just to help you get back into a normal sleeping pattern.
thanks for your help Jsue, i think i will have to try the herbal sleep remedies! glad the hydrotherapy is working for you....it sounds very relaxing! best wishes liz
Hi ,Its an interesting one isnt it.There does seem to be an overlap of symptoms from what I have read.
Although I feel sure that I have sle and am yet to be diagnosed I have also found that I have symptoms of fm too.My Gp is leaning towards fm especially as I recently discovered that my Dad has it and there are genetic predispositions with fm.
I just hope that whoever tries to make a diagnosis makes no assumptions!
One BIG difference between the two is that with SLE sensitiviy to the sun is noteable and sufferers are told to avoid it BUT with fm exposure is encouraged(with adequate protection of course!) as its said to relieve symptoms due to increased vit d.Which dog leg do ya kick!!
thanks Nadine! i hope you get a diagnosis soon, yes i have a bad reaction to sun exposure and I didn't realsie that that was a fundamental difference between lupus and fm, this site has already been such a good source of information and i only joined yesterday! best wishes and thanks for your help
thanks for the reply jennyhe, my rheumatologist doesn't seem to think I have fibro but has prescribed me amitriptilyne as he agreed the not sleeping is making my lupus symptoms worse! personally i think these are fibro symptoms i'm experiencing at the mo as they seem different to those i've had from lupus but i'm glad he's given me the medication i feel i need its day 3 of 10mg and have been sleeping better , fingers crossed things improve!
Hi Frizzylizzy, thats ok I cant take amitriptilyne as it makes me to dozy and I am afraid I might fall, I dont sleep to badly simply I think because I take so many meds, the only problem I ahve at night is waking up soaking from night sweats!!! I think thse are caused by the meds as I am well past the menopause, I am on zomorph as well as they diagnosed me with spinal stenosis as well, got to get another 2 and a half stone off then I will have the op done, hoping I can shift the weight by the new year lost nearly 4 stone at the moment
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