Fibro patient w/ severe autoimmune disease symptoms

Hi, everyone! I hate to seem like the whacko who bounces around from board to board here asking, "do you guys relate? what about you? what about you"... but... I was advised by Sherrine to try to check out the Lupus forum and see if I can get any direction. It would be very much appreciated!

I have no health insurance, which means I have no answers to certain symptoms and issues that have been plaguing me and ruining my quality of life for a couple of years now. I was DX with Fibromyalgia at age 19 (or 20?) and I am now 26 (I am on no meds)... but I'll tell you, I am progressively getting worse with symptoms that seem unrelated to the Fibro. I had doctors tell me about a yr ago that I may very well have an autoimmune disease on top of the FMS. But my insurance ran out and I have never gotten answers. (I'm working on it).

I hate to be a bother, but PLEASE if anyone can relate to any of my issues, can you let me know? The reason why there is something else going on besides the Fibro at this point is because for one, my joint pain is progressively worsening (Fibro doesn't worsen), AND it is often symmetrical. My hands, wrists, fingers, knees, ankles,* feet, hips... everywhere hurts so much, I find myself crawling up and down the stairs at home instead of walking... and I also need a wheelchair at times just to "walk" around a grocery store. The pain is debilitating like no one could believe. Nothing OTC touches the pain. Nothing. I have such severely dry, painful, gritty- burning eyes, that it hurts terribly just to move them.

I have posted in the RA forum but haven't gotten a reply. I have somewhat suspected RA or lupus.

I suffer with a headache that hasn't gone away now in 5 or 6 yrs. Has anyone even heard of such a thing!? I know headaches are common in lupus, but what are your experiences with it??

I have lived with infections after infections. Sinus infections, yeast, ear infections, bronchitis, bladder, kidney (pyelonephritis), you name it, I've had it. Reoccuring infections, fevers, swollen glands that start to itch terribly.

Yrs ago when I had insurance, my doc found that I had protein and blood in my urine for a while. A urologist confirmed that I had some kidney damage, but he did not know why at that point. I am not able to follow-up w/ a specialist! But I can feel that my kidney issues still come and go. I get a lot of pain in them and my lower back for months at a time, my urine looks very frothy (like it did when there was protein) and I also have to get up 7-8 times a night just to pee.

My breathing has gotten worse, as has my GERD (burning). I have a lot of pain when I breathe in. I started getting a lot of splinter hemorrhages under my nails (reddish-brown lines). Is it true that people with Lupus can get these too? Due to heart issues and/or blood vessel damage/ inflammation?

Please, if anyone could let me know... I'm just curious. What were your FIRST symptoms of Lupus? Please... I've progressively gotten worse within the past 2 yrs or so. I'm only 26 but I feel like I am 76! My life feels over.

I have had only minor joint swelling I THINK. (Rings have trouble fitting-- don't come off at times-- and then they fit again within a few days or weeks). My hands get so stiff and painful, they resemble claws. I also don't think I've ever had a rash on my face. What are your experiences w/ the butterfly rash and/or other rashes? All I have ever had was some flushing I think-- a reddish hue across my face, that goes away. It happens in times of stress though and very serious bouts of pain. All I had was a doctor tell me that is was NOT rosacea.

I know no one can DX here- but I'd appreciate support, opinions, stories, advise, etc. Whatever you have for me would be much appreciated!

Can anyone relate to any of this?

Eden

Thank you, Patty. Actually, my pain is symmetrical now though. It never used to be yrs ago, but now I notice, when one hand hurts severely, the other one usually does too, the same with the knees, wrists, ankles, hips, etc. I know that Fibro is not symmetrical pain, it is just random.

Believe it or not I actually DON'T like sweets, so I don't consume much sugar. I also don't consume caffeine, chocolate, alcohol etc. All of these things are headache triggers and I have a headache 24/7 + migraines at times on top of it, so I stay away from all of the bad stuff.

I have experimented a lot with foods. I have cut out gluten for certain periods of time even. But to my knowledge, foods never seem to make much of a difference for me. I already don't eat many sweets, chocolate, alcohol, caffeine. I stay away from all of it. (When I can, I prefer to always eat gluten-free, although the pain seems about the same).

I always had severe sleep issues; however, a lot of nights now I will take supplements (like magnesium and/or melatonin) and get a pretty good night's rest. Honestly, no matter how well and how much I sleep, I still have horrible pain throughout the day with stiffness that can last almost all day long. I can do light stretching, but it doesn't seem to help (my leg pain diminishes a bit after being stretched, but it always comes back in no time). Sometimes hot showers help a bit with the stiffness.

I think I've gotten worse too since my menstrual cycle stopped completely. It went away with no signs of it coming back. (I'm only 26-- with no kids). They had to put me on birth control pills so that I can get it back. But of course, now that I get it again I feel even WORSE. Ughh the joys of being a woman, huh!

Thanks for the reply!!!

Eden

Oh yes, couchtater! Hehe, cute name! It's unforgettable.

I see that you have both lupus and fibro. Can you ever distinguish between the pain of them? Or not so much? I'm sure that when one flares, the other does too!

It just drives me nuts because I had fibro for years, so I'm familiar with the pain of it. But now my pain has grown to new levels, and it is just... different. I know it's different. It's even more torturous! It feels as if there is more than just that "attacking" me. I can't wait to be able to actually get help here in good ol' PA!

Couchtater, if you see this, do you have pain in your joints from the lupus? Which joints are most affected for you if you don't mind me asking? I can't tell whether my joint pain more resembles lupus or RA. Thanks!

Eden

The general rule of thumb that a lot of Drs use is this -- if the pain goes away with prednisone, it's probably lupus inflammation. If it doesn't, it's more likely fibromyalgia.

I too have both, and I have learned to tell the difference, but not totally sure how to explain it. I think with fibro pain the whole area seems "tight" while my lupus pains have always been more "tingly".

Not much help, and not very scientific, but there you have it.