My main pain, at the moment, seems to be in my buttocks... usually one at a time...rarely both together, which results in not being able to walk at all.
It is so very painful... does anyone else suffer with this? It hurts so much to move. I hate being like this in front of the kids. I really am unsure if it is Lupus... Lupus shows itself in so many different ways but this pain is unlike my usual joint/muscle pain. I wonder if it could be sciatica.... Does anyone out there get this pain? If you do, what can I do to help ease it?
I'm going to have a real overhaul with my diet and try to exercise/stretch although that frightens me as I seem to get worse every time I exercise.... I just wish it would all go away.
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Keepingsmiling
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Sciatica pain goes down the leg too. It sounds like you have inflammation of the sacroiliac joint. You could use one of the suppositories for haemorrhoids as they have lidocaine and can give you some relief from the pain in that area and then hot water bottle and some ibuprofen.
Thanks Purpletop. When I had my MRI the doctor mentioned my sacroiliac joint. I used to get the pain more in my back, across the middle and in my ribs and only occasionally in my sacroiliac joint but it's becoming more frequent now and this flare is the second in three weeks. Every time I move, it hurts with a pain that makes me 'ouch' out loud!
I am taking nurofen daily, making sure I eat with it too... the pain is allowing me to walk but it is still so painful. I have bought the heat wraps Barnclown recommended and that's helping too.
Thanks again for your advice... much appreciated. x
So sorry keepingsmiling: this sort of pain is no fun at all. Especially when you've been trying hard to understand and manage it, but it hasn't responded.
For my version of this, heat is the most important thing. I use 'therma care lumbar heat wraps' when my version of a similar sort of chronic lower spine/sacrum/buttocks/pelvic girdle pain sets in. You can get these from most chemists and some supermarkets and amazon. They're the best make of heat aide, and I've tried them all. they are so good partly cause you can wear them while you gently keep calm & carry on with whatever you gotta do, but they are not 'stick on' so your skin is not irritated by them (really important if your skin is reactive, as mine is)
I've had this sort of pain for years, and struggled terribly with it. Before I was finally diagnosed with SLE in 2010, I found gentle stretching exercise, yoga/Pilates, helped a bit...and you're so right: over doing even what seems like gentle excercise did aggravate my pain. I finally realised that if at all poss, it's really important to lie down flat in the afternoon with a cushion under my knees for , say, at least 15 minutes. Also, I became increasingly cautious about straining my lower back, eg I don't bend over and lift or carry heavy stuff, and I try to make sure I vary my position frequently: don't sit in awkward positions for long etc....basically trying to practice what I've learned about posture from years of the Alexander Technique
I tried paracetamol etc: no good. My drs had tried NSAIDs, codeine etc etc but no Rx worked. What Rx are you on? after my 2010 sle diagnosis, I started Plaquenil 400mg daily, plus high daily doses of D3 and omegas etc, and this sort of lower spine/buttocks pain melted away gradually, so that now I only have very occasional flares. It's like a miracle after years of agonising constant pain. The way my chronic lower spine/buttocks etc pain definitely responded to plaquenil, is what has convinced me & my drs that this pain IS due, at least in a significant part to my SLE. But I do still have to do the lying down thing, and be careful about posture & weight bearing....but, hey, I am nearly 60!
I wish you relief from your pain, and hope the very best for you
I've bought the heat pads Barnclown and it feels lovely. Much easier than carrying a hot water bottle around with me. Thank you x
I'm not sure what Rx stands for but I'm on Hydroxychloroquine. Co Codamol doesn't ease the pain, it doesn't even touch it. I'm popping Nurofen every four hours at the moment and, thankfully, it's taking the edge off of it.
What is D3 and can you tell me what Omegas you take as I'd like to give them a go too? I will ask the consultant about Plaquenil when I next see her too.
I'm being careful with my posture and I will also try to have a lie down every afternoon. It's so tricky as when I feel well, I can do anything so I tend to carry on without resting and then when I have a flare up, it knocks me for six! Anyhow, I will listen to my body and pray this flare disappears very soon!
thanks for letting me know how you're getting on. this is good news re heat pads!
Rx is usa-speak for prescriptions. that's really good nurofen helps a bit.
re omegas etc: really you should check with your drs before taking doses as high as i do (my pain specialist, GP, Rheumy, osteopath have all okayed these high dose levels for me) but this is what i take:
vit D3 2000 IU daily
full spectrum omegas, as wild salmon oil, 4800 mg daily
vit C 2000mg daily
turmeric complex (curcuma longa extract + ginger + cayenne)
plus a few others but those above are the main ones for this sort of pain i think
there have been good posts here with links to good sources of info on vit D etc you may be able to find these if you do a forum search
re diagnosis: thinking about you, i wonder whether maybe you could do well to be investigated by your orthopaedics clinic at some point: e.g. MRI of spine etc. if this lower spine/buttocks pain thing comes on frequently and is more or less constant for more than, say, 3 months, i would think your gp might have referred you? especially if constant and recurring pain is mainly one sided (my version of this has been symmetrical, but with slightly different degrees and positions of pain on each side. MRIs of lumbar/sacral region showed slight disc deterioration, scoliosos, and slight spina bifida occulta). at my sle diagnosis in 2010, my rheumy stressed that although lupus can be, and often is, part of the mix in this sort of chronic lower spine pain syndrome, usually there are other issues involved, so she felt it was important and right that before i finally was referred to her, i had been examined thoroughly by ortho and pain consultants about my chronic upper and lower spine probs...and believe me, i had been (which consultations went on and on for over 20 years before sle was recognised)
re lie downs: am not sure how old you are, but until i was in my late 40s/50s, i too tended to carry on, had a really hard time forcing myself to do the lying down-daily-thing, and just felt as if i had to let flare ups put a brake on me carrying on. seems to me, that's just the way many of us are, and really it's ok! from what you're telling us, sounds to me as if, all things considered, you really are listening to your bod....it's just hard when you are in pain so much of the time and still raring to go go go. but my dear alexander teacher used to shake her head and urge me to please try the lying-down-thing....well, eventually, when i really really had to slow down big time, at early retirement due to health, i did, but truthfully, it took me a few years to "embrace" daily afternoon horizontals, but now they are totally natural to me (AND, ha ha, i wear an eye pad thing to black out any light AND flippin ear plugs)
Sounds like bursitis try some ibuprofen gel it might help with the inflammation. I have it too and trochanteric bursitis which has calcified, found out last week that once it has calcified there is nothing to do but take pain killers, steroid injections do not work on calcification
PS have thought some more: I've also had a lot of chronic upper spine/shoulder pain for years. This got me under the care of an NHS pain specialist who eventually gave me full-on neck facet joint denervations (more permanent than plain nerve blocks). A few years before my SLE was diagnosed, he did more denervations, this time to my lower spine/sacrum facet joints too. These keyhole operation-like denervation procedures did help to REDUCE my tendency to longterm chonic spine and muscle pain in neck/shoulders/buttocks/pelvis BUT it was plaquenil + omegas & D3 that REALLY nocked muscle/soft tissue pain back in a big way. So, I guess I'm suggesting that you & your dr consider how chronic/long term your pain has been, and whether it's time to consult a pain specialist
I tend to deal with the pain myself so rarely go and see the GP about it as I think, it's Lupus, I've got to get on with it. That's not being a martyr... it's just the way GP's/Consultants have made me feel. Thanks for this info, I didn't realise there was a pain specialist so it's good to know. L x
I nearly always get this pain in my right buttock (and it doesn't radiate down my leg) when I'm in bed at night, even though I've not been lying on it. It wakes me and I have to move. It takes a while to wear off. I take Hydroxychloroquine (plaquenil), naproxen and paracetamol anyway for my Lupus pains, but still get this.
Hello, It does wake me at night but it's not something that only comes on at night. I either have it for days at a time or it's not there at all. I really hope you get it sorted MrsB. Try the heat pads Barnclown mentioned above. I've got one on now and it feels really nice and is easing my pain.
Hi barn clown I did think age but I've had it for 8 years I'm 55 , with each thing deciding to breakdown I thought I'd ask if others had the same scenario , I too have sjogrens you would think that would make less water over all , this is a strange illness and each day it seems to include a different part , keep well
I have that problem too. i Was told it's caused by SI Joint dysfuction. I had many falls that also caused bulging & collapsed discs. I go to a Chiropractor often & am SAVING TO HAVE STEM CELL TREATMENT . Fuseing the Si Joint often causes new problems . Besides, surgery should be a last resort I also hve Fibro & recurring Shingles. I have multiple issues & all cause pain. I don't take any pain pills since I started a natural pain reliever called Kratom. Google this product . It really works ! If you decide to try it follow directions. Good luck
Have you seen a spine doctor or ortho? Many times, pains in the “bum” originate from the back - specifically the lower spine or sacrum. It can also be coming upwards from the hamstrings. I would make an appointment and have them do a thorough assessment. I live with what I call “butt pain” and have for about 5 years. I understand how frustrating and awful it can be. Especially because we are a society that sits all the time! I definitely advocate exercise to help alleviate the pain, but make sure you get checked out to see what the true source is.
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