Anyone else coping with SLE/MCTD "girdle" pain?

[EOLHPC]

My joint pain has generally responded well to starting plaquenil 400mg/daily last June: the edge has come off pain in ALL my joints, including pain my 'girdle area', with just slight flares during infections, which I've toughed out using heat and paracetamol (+ all the things I've learned to do all these years of joint pain re lifestyle management...anti inflammation diet & supplements, alternative therapies, pacing myself etc etc)

But something who knows what has made my gridle pain (soft tissues/muscles around lower spine and abdomen) flare up really badly -starting about 3 days ago. Yes, I've learned how to manage this during 30 yrs of coping while ortho surgeons, neurosurgeons, pain specialists etc told me it was 'just normal' due to being hypermobile and working in horticulture with tests/MRIs etc showing mild abnormalities etc. In the past 20 yrs I've used my NHS pain specialist's clonazepam & meptazinole for this kind of pain if it was really bad: I guess they helped, but I feel so out of it on them....and I haven't seen him since the SLE etc diagnosis to review my meds

and last june when my vvvv autoimmune knowledgeable rheumy figured out i'd had SLE/MCTD etc all my life (I'm 58), we wondered if plaquenil would/could actually help me with my pain etc in this girdle area....but apparently this is a part of the body that SLE affects with pain & inflammation and YES i am sure plaquenil HAS helped a lot with ALL my joint pain including all pain associated with my spine inc my gridle area. But my rheumy has said use 15-20mg prednisone for 3 days + 10mg for 2 days when I have a flare. Tomorrow I will ask my gp if this gridle thing is that sort of flare? am feeling my way here....

So, yes, I know that by my age my multiple joint probs must be multidiscipline probs (not just SLE related, lso to do with wear'n'tear etc) so it makes sense to me that plaquenil has indeed been helping some aspects of my girdle pain, but I probably have disc etc issues that can override plaquenil's effects like they might be right now...? am trying to understand my particular mix in this pain prob....

So I'm hoping one of you will be coping with understanding and managing similar joint pain flares in the 'girdle' area: if you are, please tell my about it

[jomul]

Yes,yes!! I am! I have that too and it is horrible at times. it stops me walking properly and I just seize up. The pain is all around my lower back, hips and groin. Sometimes my groin gives way and i cannot walk at all I also have alot of shoulder joint problems. My diagnoses is lupus/MCTD. I am on plaq and naprosyn and have steroid jabs. The girdle issue flares up and down and I can't find rhyme or reason for it. I have alot of hot baths and lie on my back and do very mild exercise.

I have been looking into alternative therapies, have had acupuncture on my back but cannot handle it with my burning muscles. Have you heard of the bowen technique? I know people with MS use this. Would like to know if anyone else has tried it.

I'm sorry you are so poorly and I do understand how restrictive it can be. I am 46yrs and some days feel about 86!!

[EOLHPC in reply to jomul]

Oh my gosh: this is great (well, really it's terrible)!!! Yes, for decades I've felt physically older than my mother who is 90....oh the seizing up: your descrip is perfect!

You're giving me just the feedback I hoped for: will ask my gp about naprosyn etc tomorrow. Thanks so much

I could go on & on & on about alternative therapies. Over the decades I've tried virtually everything and ultra conscientiously. Bowen was nice, but no more help to me than the things that helped me slightly (reiki, shiatsu, massage). And other things helped a lot more (Alexander technique is my no 1, plus anti inflammation diet etc, plus meditation, plus my mild Pilates/yoga type routine). although I do know non lupus people who really swear by Bowen. so if you know of a good practitioner, have a go?! I am lucky to have a vvvvvvv top osteopath who gave me exercises that sorted the groin pain pretty well...if you're interested in more details: what about sending me a private message?

I've had quite a lot of experience of acupuncture, including IMS (requires a medical licence, is vvvv deep with grrrreat long needles: helped me hugely). And also i've had a lot of facet joint devervations.

Like you, standard Chinese acupuncture is pure torture!

How long have you been diagnosed?

Well, although it's really good to hear from you, I'm sorry we have this in common. Take care!

[EOLHPC in reply to EOLHPC]

ps i should've added that YES i too have huge probs with upper spine/shoulders: the denervations helped there but also i have basically had to simply stop any weightbearing activity that but any sort of strain on the area. like you: lying flat (good tempur mattress with something btw knees every day in the afternoon for at least 1 hr)....i shouldn;t take baths cause of another condition, but oh my goodness how my morning hot massage shower helps!

as you can see, i could go on & on...

[Hidden]

Same here. When I was first diagnosed that was my main problem. I was in so much pain and had trouble walking at times and just standing was painful. X-rays showed advanced arthritis in my pelvis and sacroiliac joints (lower back), plus bone spur. Chiropractic adjustments are the only thing that took the pain away for me. I used to go about every 2-3 months. That's how long the relief would last until the next adjustment. I haven't gone for an adjustment in about 4 months now. I haven't needed to. The chiropractor said one leg was longer than the other which throws everything off and can cause arthritis and pain. His adjustments fix this. He adjusts my spine from top to bottom and "pulls on my leg" while I'm lying down to lengthen it. Sounds kind of funny, but it works. by the way, I also have chronic shoulder and neck pain. Plaquenil really helps with that. Hope you find some relief.

[Hidden in reply to Hidden]

Forgot to add I also get the seizing up at times. I'll suddenly get a sharp stab in my lower spine and in an instant feel like I'm going to fall. I usually grab onto something if possible and then that quickly it's gone.

[EOLHPC in reply to Hidden]

Thanks so much for this: and here I was thinking my suff was just "normal" spine spasms due to wear & tear (how silly is that considering it ll started when I was only 28) but this is what all the consultants, alternative practitioners etc told me. I guess I still have to accept that an element of wear & tear is relevant to my mix, but because plaquenil has helped me (and you both) so much (when NSAIDs & prescrip painkillers couldn't) I have to believe SLE/MCTD are even more important elements.

How long have you been diagnosed?

Take care, and good luck

[Hidden]

I was diagnosed 4 years ago. My rheumie said arthritis is a symptom of lupus. Lupus causes arthritis in lots of lupus sufferers. I believe that's why plaquenil helps this pain. My rheumie told me to keep seeing the chiropractor if it helps me in addition to her treatment.

[crusher]

Mollydolly - yes, yes and yes re the sudden seizing up and pain in abdomen, lower back/hips and pelvis - I get pain as if ive been shot/electrocuted/stabbed/all of the above coming instantly and going just as quickly... sometimes even when asleep in bed... Not good fun for me or hubby as I launch myself into the air in agony! (I try to see the slightly humorous side of it when I can!)

[Jennie_103]

Interesting! I have MCTD and hypermobility and I have a lot of pain in my sacroiliac joints too. Partly achy but also the sudden stabbing pain (for no apparent reasons) and also a strong achy pain (best description I can do) there if I have stood up for too long that day.

I wondered if it was a common Lupus/MCTD thing, so it's really interesting to hear other people have the same pain. I was starting to wonder whether it was part of another condition altogether! I had steroid injections under x-ray (never try it - most painful thing I've ever had done) and they said it showed "wear and tear" - at 23 after a very sedentary lifestyle.... I didn't really feel this was a satisfactory response I must say.

I'm on pregabalin and just starting on hydroxy (3 months in) and I must say, it's helping the bad flare ups but not completely shifting it all yet.

Thanks

Jennie

[EOLHPC]

It's wonderful to hear from all of you: thanks so much. And for the laughs crusher! Yes all my consultants say MCTD/SLE and hypermobility are not uncommon together. And arthritis does get into that mix too.

My flare is gradually calming own...been bad for past 5 days, but have been helped by your replies a lot to keep calm and gently carry on. Otherwise helped by paracetamol & lumbar heatwraps (boy am I glad they came on the market a few years ago...I'd tried the adhesive heat pads but my skin got hives of course). Heat really helps me (massage head on shower in morning etc). Saw my gp yesterday and he said if it doesn't settle use my mefenamic or naprosyn or we'll try prednisone taper 20-10mg over 5 days. Trying to avoid stronger meds, as since last June plaquenil 400mg daily has seemed to stop me getting this sort of flare...

I know what you mean jennie! have had steroid injections under xray too: as the diagnostic basis for going head with bilateral facet joint denervations to all my cervical & lumbar/sacrum vertebrae. My anaesthetist pain specialist did denervations ops twice over the years, and although the operations are an ordeal, they have at least numbed my spine itself and helped me learn to manage flres like i'm having now...what I now think of as the associated SLE soft tissue girdle pain. As i understand it, Denervations like these are only usually done if first your pain has responded to diagnostic steroid injections. After that, Denervations are basically meant to be more permanent than the injections, but often need to be repeated at least once as nerves do try to how back. So I did have to have this done twice, top & bottom. These ops take months to recover. I often wonder whether if my drs had known I had SLE/MCTD they might just have put me on say plaquenil instead of doing the denervations.....

You guys are great: take care

[Lucylou31]

hiya, just wonder barnclown if hypermobile is related to Lupus as i was diagnosed with that also. But the leaflet that was given says not may people have this double jointed mobility. Anyway i have upper and lower back pain. I was given physio and she taunt me exercise that does help as i cannot take any painkillers as you know because of my stomach probs. Here Goes Sit on a hard chair with you each hand holding underneath seat, relax shoulders tilt head to left as far as you can go but pointing ears towards your shoulder. Hold for five seconds do this x 5. Then to the same to the right. Now tilt head again sideways back onto your left side but slighly point ear forwards infront of shoulder hold for 5 do 5 times do same of Right side. You should find you lower back and inbetween shoulder blades pain has eased considerablely. Hope this helps Lou

[EOLHPC]

Thanks lucylou: am totally with you re exercises. Sounds like we've been through similar learning curve: by time I was 30 physio & osteopath had me on these sort of exercises, and over the years when my condition permitted I've carried on cause yes the really do help! I've got my own little weird yoga/pilates basically routine I do 30 min each morning. And I do have to give this a rest when I'm having bad flare. And everything I've learned from Alexander teacher is really important to get my posture right while doing anything. And heat helps no matter what. And lying down flat every afternoon for at least 30 min. When I think about all the lifestyle stuff I do to manage this sort of pain, I guess I'm desperate. But it all does help, like you say. Only thing is: wish the drs had spotted my lupus years ago and got me on plaquenil: cause it really is making a huge diff or all my joints, so at least when spine stuff is flaring, other stuff isn't as bad as it can be....usually

[EOLHPC in reply to EOLHPC]

Ps sorry meant to say: yes, in past 12 months have had various confirmations that SLE & MCTD & hypermobility are all linked. I first heard about hypermobility in 1998, way before my NHS lupus diagnosis last year. And it is clear I've been hypermobile & had DES MCTD since birth. hypermobility also runs in my family on both my mother & fathers side: like most conditions, its strength varies between individuals....there is a "scale" and gps, physios, rheumy's test you to see where yours is on the scale. There is a good hypermobility association I found online with a forum & loads of info