Fibromyalgia Support Group

I posed a similar question in the Lupus forum since I have both diseases, but was curious to see if anyone here has the same thing going on. My docs told me my joint pain was not due to the Lupus because it is non-inflammatory. So several docs have said Fibro in addition to the Lupus because of the joint pain. But I don't have any of the tender points (could someone explain these a little better to me? I know where they are on the body, but what is the sensation?) and my muscles don't hurt at all. But my joint pain is EXTREME and in every single joint from big (hips, knees, shoulders) to small (finger and toe joints!)

Any help on this subject would be greatly appreciated, thanks!

My worst pain is in my shoulders and elbows and therefore it feels like the pain is in the joint. But they say it is really the muscle tissue around the joint.

And they supposidly can make this determination by eliminating arthritis and other inflammatory diseases.

Thank you for responding! I think I'm starting to get that what they are talking about is the stuff around the joints. I guess when I think about muscles, I think of the big ones like quads, hamstrings, biceps, etc. and I don't have soreness or pain in those. But I do notice what feels like tendons or something hurting because the pain often spreads from my joints up or down my legs and arms. Especially when I type! Sometimes it feels like the dang bones themselves! But thank you again for your reply- it helps

Yeah, I know that feeling. I told a Rheumy a couple of years ago that I was sure I must have bone cancer. Because the pain is deep in my bones and then radiates down.

I do get pain in the muscles of my arms too. But it does feel mostly like joint pain.

Hope you feel better soon.

Hugs,

SW

You have to have at least 11 of 18 tender points to receive a diagnosis of fibromyalgia. They are very small areas of muscle that are extremely painful when pressed. It feels somewhat like a very bad bruise, and it only takes a tiny bit of pressure to cause the pain. It really does feel like someone is taking there knuckle and jabbing it into a bad bruise as hard as they can. Of sourse some ma be more sensitive than others. My very worst ones are on my sides at the bottom of my ribs, my hips, and my outer thighs. That's not to say the others aren't very painful, just that if you poke any of those you better not be within reach when I get over the initial shock of the pain, or I'll hit you. Poke the others and I'll just scream and cuss you a bit.

I'm not saying you don't have fibro, but if you have no tender points it's highly unlikely, and they should be doing tests to find out what is going on. Although the bone and joint pain does happen with fibro. There are always exceptions to the rule though, maybe you are one of them.

Just a thought, have you ever been tested for Lyme's disease?

Post edited by: amommy02, at: 02/14/2009 17:13

By the way, fibro or not, you are welcome here. Hope you stick around.

Em77 It sounds more like arthritis to me, have you seen a Rheumatologist?

One thing that springs to mind is Gout, boy can I ever relate to gout. If you don't know what gout is, it is the kidney's inability to process purines, they occur naturally in the body and in the foods we eat. when they don't get processed the turn to uric acid which in turn builds up in the joints and turns to crystal. Imagine shards of glass in your joints. At my worst I had it in every major joint and most of my minor ones. It was a result of kidney failure for me as a side effect of taking too much Motrin, mind you I never took more than the RDA but I took the max for months. Remember this drug has different names, Motrin, Ibuprofin, Advil...this may be a consideration. Not saying you have this but it is a possibility. have your kidney function checked and also your uric acid levels. Good luck and God bless!

Em77, welcome to the family! I was also convinced I had bone cancer early on. But only in my elbow. The rheumy said it was tendonitis and I also have calcium deposits in my joints.

I have arthritis and degenerative disc disease as well as a bulging disc in my back. For me it's sometimes difficult to distinguish one pain from the other, but the explanation sleepwalking had makes a lot of sense.

At the appointment where I got my diagnosis the Dr. was checking my angles and legs for edema. Every time he touched me it elicited and "Ow!"

For me, the pain is usually migratory (except for my back.) Sometimes when I'm lying in bed it moves up my body from my feet to my head, like a wave washing over me. Other times it just ricochets really fast from one spot to another.

I think I've reached a new low, lately, though. I've been getting pains in my toes. Sometimes one toe, sometimes a bunch of them.

Fibro is an extremely dynamic and individual thing from what I've figured out. It has many, many, common symptoms and threads, but it affects people very differently.

amommy is right, you're welcome here whether you have it or not. Especially while you search out your diagnosis.

Em77, First welcome to our group.

Now I have to say I have read this thread a dozen times and I am still so confused my head is spinning. My fog is bad and I am having trouble grasping this, but I am going to try to respond.

First these doctors who have said you have fibro, have they done a tender point exam or are you trying to examine yourself? It is sometimes difficult to find the tender points as they can be quite deep. I have 18 of 18 and I can only find a couple, but believe me the doctor found them. You have to have 11 of 18 in at least 3 of 4 quadrants of the body to be diagnosed with fibro. You were already given a good description of what they feel like. It sounds to me like you could have either arthritis or gout. I hope this helps.

Hellokitty, Its sounds to me like you are confusing tender points with trigger points. Tender points are in specific locations and there are only 18 of them. Trigger points are little knots in the tissue or muscle that feel very much like tender points but a very different. There are no tender points in some of the places you describe. For them to be trigger points you do not necessarily have to feel the knots. I would recommend you search for both tender points and trigger points. I think this will help you a lot as there are things that can be done for trigger points.

I have this exact problem. I do not have lupus, although I have the symptoms of it.

I have just been diagnosed with Fibro, but all I have is joint pain, with the exception of my hand, where I am now getting muscle pain.

I have no pain in any of the tender points. None. People can touch me all day and it does not hurt, but my joints hurt so bad I cannot use the right side of my body at all.