Lupus Community

Hi and Welcome!

Has your wife been told that she has Antiphospholipid Antibody Syndrome with her lupus? It is common in people with lupus

http://www.medicinenet.com/antiphospholipid_syndrome/article.htm

Since she is having these pains, I would suggest a visit to the doctor to rule out blood clots or something more serious.

Lupylisa

Hi truconserv, yes I have had that kind of pain, being worse when I get into bed. It is a little better now that I am back on prednisone. That seems to be the only thing that "tames" my constant pain.
Has she been "newly" diagnosed?

Thank You I will check this web-site out.

Thank You for the info. She has been newly diag. appx. 4 months ago. This has been going on and getting worse with new problems popping up like the one I discribed. She just went last weeks for more blood work from one of the very few doctors that she trusts. A wonderful doctor that specializes in complications in lower intestines---had surgery about 4 years ago for bowel cyst.

truconsern, when I was first diagnosed I was in terrible pain in both my arms and legs. Until the right cocktail of meds was figured out I would use an electric blanket as a whole body heating pad which was helpful. In the beginning it does seem like new symptoms keep popping up. My husband used to tease me and say quit reading that book ( the Dan Wallace book) it seemed everytime I read something I got it. lol I hope things calm down and they figure out a plan for her to feel better.

I'm 56, female and was diagnosed in early 2008 and at that time had a myriad of symptoms, all that we were able to get under control with a short course of Prednisone to address the intial swelling and an ongoing course of Plaquenil to keep the Lupus at bay. I do however get "flares" from time-to-time, but by keeping my stress down, they seem to be less frequent and not as intense as they initially were. (This has really been annoying....as I used to bodybuild and miss being able to lift weights, but my joints tell me they don't like it....sigh).

About 2 months ago I woke up one morning and felt as though I'd been hit across the left buttock with a 2x4 and the pain ran right down my leg to the calf area. It was a 6 on a scale of 1-10. As I had an appointment with my Rheumatologist later that week I waited to check with her. She stated that she thought I probably had "facet joint syndrome" (the little joints between the vertebrae and the discs in your back. She further stated that most people, as they age, will experience some "wear and tear" on the boney structures of the back, but in my case there was probably some pretty pronounced deterioration of the joints and this is what would be causing my "new-found" aches and pain. She also told me that there really wasn't anything that could be done and that I could expect it to get worse.....she was right. I now have pain alternately between the right and left hips, down the legs and into the ankles.

It might be worthwhile to request an xray of the lower back and hips, specifically the are of the L4-L5 and L5-S1 joints, they'll be able to see changes quite easily and determine if osteoarthritis is a factor in the pain picture.

There are some basic things that I do to eleviate pain at night:

1) make certain you have a really good mattress (proper support is crucial)
2) try using a body pillow and either lying on one side or the other, hugging the pillow the length of the body (sort of draping a leg up over the pillow) to take the pressure off the lower back
3) try tucking pillows under the knees when lying on your back, causing the small of the back to flatten out more to the mattress, creating the proper pelvic tilt
4) WEIGHT......that's a really important factor. If one can ensure they are at a reasonable weight for their body frame, this is a huge part of the puzzle. As joints are so compromised with any autoimmune condition, it's really important to take as much stress off them as possible, and....last but not least
5) Do anything that you can to de-stress....I know that may sound easier said, than done...but if you can find something that helps shift your focus from the pain - listening to soothing music, sounds of rain or the ocean, something like that to help you move into a more relaxed state while in bed can really help the brain chemicals that transmit the pain messages to the brain.

BCliving,
Besides all my autoimmune junk I have phase II degenerative disk disease. Going to a chiropractor as been a tremendous help. I have been on hydrocodone for seven years the same dose. In the spring when the pain got much worse I went to a chiropractor. I did not want to increase my pain meds or go for an epidoral. I am so glad I went to her. The hydro beds they use help with back pain, fibro and lupus pain, plus it is relaxing. I never thought I would let someone adjust my neck or back but I can't believe how much it has helped. It is something you have to maintain though especially with autoimmune diseases since our bodies are always fighting us.

I got up one morning at the end of May and could bear no weight on my right leg. It scared me. I went to my pcp and he sent me in for an mri and had me schedule an appt with a physiologist. I had a herniated disk between my L5 & S1 vertebrea....the last disk you can really do this to. Still no clue as to how it happened. I ended up with an epidural injection into my spine. No problems since.
However, I do have intense pain in both legs lately and have something similar to restless leg syndrome, but it happens all hours of the day. I see my rheumy next week and plan to discuss this with him.

My sister woke up and tried to get out of bed, she found out that she had ruptured a number of disc in her neck. She has been going to physical therapy and shots. I hope your rheumy helps you. I have learned to write all of my different types of issues don't, like keeping a journal. It helps me to remember.

I suggest you to have check in hospital asap, because lupus may develop into other diseases if there is no timely control, such as lupus nephritis. And, Lupus Nephritis is immunological disease with different pathological types caused by Systemic Lupus Erythematosus, accompanying with obvious clinical manifestations of renal impairment.
For these kinds of disease, you'd better check it carefully and not delay the treatment.

I would recommend that you check in with your rheumatologist as soon as possible. While a lot of possible diagnoses have been mentioned in the comments, it is important that your doctor examine your wife to rule out the serious complications of lupus, and establish the cause for the pain. This might require some imaging studies such as X rays or MRI's. In my practice, I see a lot of mechanical back pain issues as well as secondary fibromyalgia syndrome in lupus patients- these should be possible to treat. Wishing you the best.

Hi my name is Iris. I have the same problem. I know that pain, it is awful. Does her feet gets numb? Does she feel burning or needles? If so, it is call neuropathy a condition of the nerves. Hope she feels better. A neurologist can help.