Hi all, question? Does anyone else suffer with leg pain at night? Almost as soon as I get in to bed my legs start to play up, sometimes it's just twitching other times it feels like cramp but its not. My hubby rubs them vigorously and this sometimes helps but not always. I have had sle for 20yrs, at Christmas I went down with shingles, not been right since, finding it hard to cope. Any ideas!
Leg pain: Hi all, question? Does anyone else... - LUPUS UK
Leg pain
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bluefingers
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I know how that feels Bluefingers, I have suffered pain in my legs for a few years now! I was told it was my hamstrings were tight, so I was given some stretching exercises to do to help! I do sometimes suffer in the day, but it is much worse at night and I think this is because, you have nothing to take your mind off it! I tried different medications to help, but they either didn't or did but with other side effects! At that point the doc said I either have to put up with the pain or the side effects! I started juices, following Jason Vales recipes, and wow what a difference and not just with the leg pain, it has helped with all my pain, mouth ulcers and infections! The only down side is, if I go away anywhere and can't juice, then the pain etc all comes back and feels so much worse! I recently had a whole week where I could juice and omg did I suffer! I am still suffering a bit now. This time I have gone back to the doc, and we are trying a few things! A change from Lansoprazole to Ranitidine, as it my be a side effect of the Lansoprazole, blood tests and exercise! All I can say at my worst, it's like I can feel my hamstrings tightening and the stretching isn't helping! It got so bad this last time, that I wanted to chop my legs off 
Sorry I can't be of much help at the mo, but I'll keep you updated! x
Wow, sounds just like what I go through.. I have severe restless leg syndrome and I am on Mirapex 1 mg at night. I have been on it about 10 years and now it doesn't take me through the whole 24 hours so will need to be bumped up further. I have acidentally gone without it and then the attack lasts longer. Before being treted my hubby would do same thing for me. It would help a tad but vigorous..oh yes!! I was dx with SLE in 2000, MS in 2001, since then APS (Hughes Syndrome) and a few others just for good measure..lol. I know when my legs are acting up badly, I am so darn miserable and cannot stand myself. I hope you can get the help needed to calm your legs down. xx
I was in a similar situation and my doctor opined that it was due to uric acid deficiency in the body. To be on the safer side get your blood test done to see if there is any deficiency of uric acid in the body. You may take a second opinion from your own physician to confirm whether this deficiency causes such problem.
To overcome this problem I simply started taking Homeopathic medicine "Urtica Urens-30CH" 4 pellets under the tongue 4 times a day + after 15 minutes "Rhus Tox-30CH" 4 times a day. I felt relief.
God bless you with good health.
Hi ,its horrid ,I get it every night ,I rub Volterol gel on them ,that helps ,also a hot shower be for bed ,and don't get in to bed if the bed is really cold that makes it worse ,hot microwave bean bag ,not sure what there called, Boots sell them sometimes with lavender in. I also twist my feet around keep the blood flowing .Good Luck I do feel for you ,LOVE and Huggs.
JACQUI xx
I get leg pain at night too. Cramps, arthralgia, myalgia and twitching. I now take Nortripitline 10mg at night and it has helped a lot. I only get it occasionally now. X
I used to suffer this every night and was put on Quinine Sulphate which worked at first but as my condition worsened it wasn't until I was on Hydroxy chloroquine Sulphate and Azathioprine that is came under control.
Hi I have had terrible aching legs for years so bad could barely walk sometimes in tears it's like something pulling on the bones my rheumy told me its connective tissue disease which goes along with the lupus and doubled up on the hydroxy (Plaquenil ) of 200mg twice a day I also use voltarol and a heat pack and try to drink as much water as possible during the day has helped a great deal for me hope this helps. Good luck take care ☺️
Hi there , yes I do, terrible pain & all my pain was a result of years of shingles. The nerve pain is awful especially at night. I had shingles so bad all of the time also was having a lot of urine infections at the time. You never recover from shingles cause the nerves get damaged. I've also tried all the medication. Idofind alcohol calms it slightly though. So when really bad I will have a few glasses of wine x
I especially like the wine tip!
Hope you don't mind me picking up on one bit of your reply: How have you got the urine infections to settle down? Immunology tells me that IVIG isn't able to help with UTIs & pyelonephritis because although these are symptomatic of lymphopenia they are not related to hypogammaglobulinaemia
Well it all settled down with me after starting immunoglobulin infusions. I been on them for 10 years now & although I do get an odd urine infection nothing so severe & not hospitalized . The shingles also completely disappeared . My immunologist said it doesn't normally help with these things but it has with me.
Terribly distuptive. As others have suggested, Restless Legs Syndrome--treatable and responsive to meds my doc says ought to be taken earlier than bedtime; cramping I suffered before being prescribed hydroxychloroquine. Wishing you the best, Molly
I have systemic Sjogren's. I had horrible boring burning pains in my legs every night for about a year. At the time I was taking Plaquenil. I am now also taking Mycophenolate and this seems to have stopped the problem and I can get some sleep at last.
I have to agree with Dar58. It sounds like restless leg syndrome. It was something I had for years and put up with just as you describe. It keeps you up at night when you are already exhausted. My neurologist diagnosed mine, he did iron and ferritin blood tests. My HB is usually just below but ferritin is very low. It has improve significantly with tablets. It has also improved since thyroid tests proved low and on thyroxine. Don't ignore it see your gp. You need to sleep. Oh and can I have a foot rub?
My version of this is partly due to tendon tightening in my legs & feet over the years as my lupus & sjogrens progressed without systemic prescription treatment. When I'm on hydroxy + myco + amitrip + pred tapers I have mush less of this, but I do have to keep up the arduous tendon rehab physio regime that helps me keep my tendons as stretched as poss
Without my Quinine, I would not be able to cope! I also take Mag Ox - 400 mg of magnesium oxide. Even with that I still need the Quinine - 200 mg. at night. Not only my legs, but my fingers and hands cramp so badly. SLE is a vicious disease. It's given me severe headaches, for which I have to take prescription meds. Plus, I have ITP. I wonder which one is killing my head! I can't help but think about brain bleed when the head pain gets severe.
Try some magnesium. Relaxes muscles. I take magnesium supplement every night. Was getting terrible cramping every night in my feet, and restless leg.....helps a lot. There is also magnesium rub. Could rub into leg.
Hi, I have very similar issues. My legs, hips and feet can become really painful when I go to bed I take brufen at bedtime and during the night. My sleep pattern is poor at the best of times and this really makes it worse. I've had SLE for 9 years. I mentioned my leg pain to rheumatologist, he suggested a bedtime dose of amytriptylline, which he said could help with pain and insomnia. Unfortunately I can't try this at present due to being on medication for anxiety, but it is something I'll keep in mind. Hope that helps you x
This is a weird thing that helps me with a lot of different leg at night issues. I take 800 of Vitamin E. I haven't had it lately, maybe because I'm taking aspirin. I suspect it is sticky blood.
Hi all, i get this awful pain in my right leg after doing a 12 hour shift, i have it now after work today i got an xray of my knee but all clear any ideas?? Its a throbbing pain feels like its deep in my leg!
Blue fingers...I have restless leg, and a lot of cramping in My legs, feet at night. I take a magnesium supplement every night to relax my muscles. Works for me. Can't hurt you. Just get diarrhea if you take too much. Take lower dosage if that happens. Take care.
