I'm new to this forum, but have been diagnosed with Lupus and Fibromyalgia. I know some of the symptoms are similar and the only thing that doesn't fit with my Lupus diagnosis that has my doctors confused, is that my joint pain is non-inflammatory.

I am on Plaquenil which seemed to help initially, and I haven't been as bad as I was before I started it, but they won't give me Prednisone since I have no swelling of the joints. I understand their reasoning and I know the side effects of that stuff can be awful, but I'm just trying to figure out why my joints hurt so badly- I'm 31 and I have to use a cane and/or wheelchair to get around.

It's interesting, because it was my out of control joint pain that lead me to the docs and specialists in the first place. They have pretty much done all the tests they say they can do and told me that when they don't know where the pain is coming from, they call it Fibromyalgia. Here is the weird thing... I do NOT have muscle pain or tender points that they talk about with Fibro- just the excruciating joint pain. I have also tried all of the drugs out there for Fibro and nothing has even touched the pain.

So, I guess I'm just wondering if anyone else has this problem. Or Fibro without the muscle paion/tender points (I know a lot of people with Lupus have other diagnoses as well).

Thanks for taking the time to read this!

I have swelling in certain areas, but they don't have me on Prednisone. I'm actually glad, because I saw what it did to my mom. They have me on a different anti-inflammatory, and I still have swelling in certain areas.

I also have Fibro though. There is obvious muscle pain in certain areas. And, I am affected in all the tenderpoints, but one.

Autoimmune disorders and diseases are so confusing. I think even to the doctors.

Sorry, I didn't answer your question at all.

As far as joint vs muscle pain, I guess I think of my muscles in terms of things like quads, hamstrings, biceps, etc.- the things you strengthen when exercising or working out. My joint pain is specifically in the areas where my bones meet and have a socket, I guess. I am aware that we have tendons and connective tissues and stuff like that in and around the joints, so maybe that is what is going on with me. But I just don't feel pain in the big areas where I consider my muscles are.

I hope I explained it okay- the good thing about having Fibro and Lupus is that I can chalk up my brainfog to both diseases!

I don't know; I've never had any swelling or inflammation in my joints although they ache and burn and sometimes even have shooting pains in them. These diseases ARE so confusing! I'm always trying to accept them, but then every once in a while, my mind starts ruminating for answers, causes, anything that would explain how a healthy woman or man at the supposed prime of their life could feel as awful as we feel, ya' know?!?!?

I have always had ana negative lupus. My rheumy doctor is a teaching doctor at the University of San Francisco and she doesn't always go just be the lab results she looks at the whole picture. But reading all your stories it sounds like me. quote]

You must be in good hands. UCSF is amazing! I heard some of the rheumies speak a few years ago and currently am involved in of their researches.

Lab results mean so little in lupus and it's annoying to hear of doctors who think they're so valuable.

I've endured seven knee operations (both knees) due to CPPD and chondromalatia of the patella (softening of the cartilage--unknown why it wouldn't harden).

I have been diagnosed with lupus (SLE) and do experience mod-severe joint pain on a daily basis...without inflammation. However, I take a low-dose steroid daily to keep this at bay. I cannot take Plaquenil, due to another AI disease (myasthenia gravis); however, my rheumatologist prescribed Imuran in place of the Plaquenil.

Have you had a bone density test? Osteoporosis can create some nasty bone pain.

You may be familiar with "referred" pain which is to say that the source of the pain may not be your joints, but is, in fact, caused by muscle or synovial (connective tissue) pain that involves the joints as muscle/synovial tissue covers all bones.

Have you been prescribed non-steroidal anti-inflammatories such as Voltaren (old, but effective medication), Baclofen, etc.? If you don't have to go on steroids, consider yourself very lucky. The side effects are not pleasant and are life-changing.

One other thought (and I advocate this constantly): Read "The Lupus Book" by Dr. Daniel J. Wallace, Chief of Rheumatology at Cedars Sinai and reknown expert in lupus.

Peace out.

Post edited by: LupieToons, at: 09/23/2008 12:03

I'm not sure how it would be possible. But just because you don't see inflammation, doesn't mean it's not occurring in your body.

The LFA says

Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means "set on fire," is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both).

My suggestion is to keep copies of all lab work. Keep a health diary- log daily, how you're feeling, the weather, what you ate, exercise, etc- everything. This will allow you to see a pattern form over time.

Another suggestion, of course consult your primary care doctor, get the anemia under control. I've always dealt with anemia from the time I was a little girl. It got really bad when I was pregnant with my first child. My heart rate went soaring- 166bpm and I felt HORRIBLE. After taking 3 iron tabs a day for the next 20 weeks, I felt better.

Anemia causes fatigue, brain fog, etc. So it's important to know if these symptoms are from anemia or something else. I've also found that doctors treat you differently if you don't try to "help yourself"- eat right, exercise, proper supplements/vitamins, etc. Dealing with some of these docs is difficult enough.

Have you tried any therapies? Anti-depressants are usually a first. SNRI/SSRI help with sleep, pain tolerance, depression from feeling like crap, etc. They really can help. A lupus friend of mine is only taking Effexor XR and Plaquenil. Effexor XR has made the biggest improvement. Effexor XR is a SNRI like Cymbalta.

Tri-cyclic anti-depressants are prescribed for sleep. If your sleep cycle is off (have a sleep study if you can), your body will be out of whack! Fibro patients have sleep problems which in turn causes or increases the pain. It's a viscious cycle but if the sleep can be improved, a lot of the other problems lessen.

Then of course, there are the nsaids. Do they work for you? If you taking OTC or prescribed, make sure to protect your stomach. For me, eating with the nsaid wasn't enough. I've been told if I'm going to take a nsaid, take Zantac 150mg with each dose.

Some other things to consider- water exercise. Your local arthritis group will have a program. Yoga, tai chi, qi qong are beneficial for everyone.

Hopefully you don't have lupus but a source for your problems is found. Don't give up! Don't let anyone tell you "it's nothing".

keep us posted

Nicole