Fibro patient w/ severe autoimmune disease symptoms

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Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 1:36 AM (GMT -6)   
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 :-)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 2/23/2014 11:01 AM (GMT -6)   
Fibro and lupus pain are sometimes hard for me to distinguish. I'm not sure where you got the idea that fibro cannot worsen, but my experience is that it it definitely CAN get worse. In my case it's clear that lifestyle choices affect my pain level. A sugar binge, for example will make my body ache like a bad flu, so I've given up sugar. Gardening usually makes me feel lousy for a couple of days but it's worth it to me so I chose to tolerate the pain rather than give up gardening.

Until you can see a rheumatologist, I'd urge you to focus on getting enough sleep, cutting out processed foods, exercise, and keep a health journal to see if you can pinpoint things that make you feel worse. Do your joints hurt more after a day in the sun? Do certain foods affect you, and so on. And keep a list of all your symptoms. This will help your doctor when you're finally able to see someone.

And don't stress. You already know that there is a definite correlation between stress and illness, & I find that yoga and meditation help.

It goes without saying that if you do have something autoimmune going on, the sooner you can get a diagnosis and begin treatment the better. Good luck.

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 4:40 PM (GMT -6)   
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 :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/23/2014 10:39 PM (GMT -6)   
I talked to you on the fibro forum.

You sound a lot like me in the pain department.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/24/2014 3:08 AM (GMT -6)   
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 :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/24/2014 7:51 PM (GMT -6)   
My lupus likes to keep my elbow, knee, & shoulder inflammed mostly.

I hurt other places, but those seem to never get well.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 2/24/2014 9:26 PM (GMT -6)   
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.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/25/2014 2:12 AM (GMT -6)   
Thanks again, Lynnwood!

Interesting about the prednisone because I had been on it a few times a couple of years back, i think for recurrent kidney inflammation/ infections, recurrent sinus infections, along with severe allergies... and my pain was significantly improved all over; it however did not help my sinuses for some reason like it was supposed to. But it helped my body pain. My pain has gotten much worse since then though, who knows if prednisone would help now or not.

I think I do relate more to RA though. But who knows! I have various problems with various parts of my body and it has taken a whole new form the past year or so. And I'd still like to know why I have recurrent kidney issues..

Can't wait for insurance again! Can't live like this!

I love your Oscar Wilde quote! I love him-- he's one of my favorites! :-)

Eden :-)
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