Lupus and Back Pain

It seems that many of us suffer from various types of back pain. I thought this topic deserves its own thread, so that we can discuss our experiences with this particular pain, and therapies that we've tried.

I experienced lumbar and sacral pain from adolescence, which was attributed to ballroom dance training. It wasn't debilitating, until I was about 20. I was having problems sleeping because of the pain, so I was referred to a sports' physiotherapist. I had 5 sessions- each used TENS units, manual massage, and exercises. My pain improved greatly, and was manageable until this past year. I was diagnosed a year ago, and since then my shoulders, neck, are increasingly sore. In the past few months it has become intolerable, and I need to use a massager and heat pads every day.

In my last appointment, my rheumy didn't feel my back (I am not overweight, and it is easy to feel and see asymmetrical bulges around my shoulders). She told me to continue to use heating pads, and ask my b/f to massage using the heel of his hand. I asked about acupuncture- she encouraged it, but said there wouldn't be lasting results. She said this pain was from general muscle spasms associated with lupus. She also thought I should concentrate on my posture.

I think I will get a referral for physiotherapy again. Any tips on finding one knowledgeable on rheumatic disorders??

What are your back pain therapy regimens? What has NOT worked?

Penny:

I have the same problem. I also have degenerative and herniated disks, so I never know what is causing what. I have constant muscle pain in neck, shoulders and back, along with general over-all muscle aches.

I have tried so many different things, some help short term and some not at all. I did physical therapy like you did and it helped a lot while I was going, but as soon as I stopped, I was right back to where I was. My insurance only pays for 20 sessions a year and I went twice a week, so I only got 10 weeks out of it.

I never thought my problem was muscle spasms associated with Lupus, I figured it was myalgia from muscle inflammation. It is similar to Fibromyalgia, but that does not respond to steroids; mine does seem to respond to steroids and anti-inflammatories. I have been getting Trigger Point Injections in my back and neck which do help, but again, short term. Every six to eight weeks I have about 12 injections in my muscles.

I also have a TENS Unit which I use when muscles are really tight and stiff. It really takes the edge off, but I end up wearing it for about 6 hours straight. I wear it at work under my shirt.

Like you, I use a heating pad as much as I can. The winter months are especially hard. I also have a few prescriptions that help.

It sounds like you pretty much do all of the things that I do, except for the injections. I haven't found anything that works long term and it's a daily juggling act to get to the point of functioning. The only thing that did work, Lyrica, ended up causing intolerable side effects.

I ended up seeing a pain management specialist because my rheumatologist was unable to prescribe pain meds that suited my needs. I guess in this area they are getting a lot of heat about certain prescriptions and they are referring their Lupus patients out for that. It upset me because when I got to pain management, they had never had a Lupus patient and didn't quite know what to do with me. I saw two doctors who didn't help much and then saw a PA. She has done more for me in the past 6 years than any doctor I've seen, so it worked out in the end. I have some days now where I can tolerate it because of the TENS and injections.