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I have FMS- but autoimmune disease symptoms too

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Posted 2/22/2014 4:39 PM (GMT 0)
Hi, everyone! I was on this forum for quite some time way back in the day sometime- but with a different name (I don't even remember it, it's been a while)!

Anyway, I have a few questions to ask fellow Fibromyalgia sufferers because my life and health continues to worsen. I am progressively getting worse. I have no health insurance, and I was DX with FMS about 7 or 8 years ago now. I am 26 now. Back then, the rheumy confirmed all of my VERY painful tender points. I have never really been treated. I am on no medication, nothing.

Back when I still had insurance, just last year (before I turned 26), some doctors suggested to me that I may have an autoimmune disease on top of the Fibro. But I was never able to get examined and tested for anything because I lost insurance.

My main question is... for those who feel that they ONLY have Fibro, completely absent of autoimmune disease... do you suffer from recurrent infections? Because I have never known it to happen in pure Fibro, but I want to hear it from those who have it also. I, myself, have recurrent infections. Everywhere. Recurrent sinus infections, yeast, bladder, pyelonephritis (kidney infections), ear infections, bronchitis, you name it-- I've had it. I persistently get infections, fevers, swollen glands, etc. Not to mention, no matter what I put in my body, I seem to reject it. I am finding more and more food allergies, etc. I get hives daily. I even get weird responses to vitamin supplements, etc.

It's like no matter what I do, I keep getting sicker and my body rejects every single thing I put into it. This isn't "common" in Fibro, is it? I have also had kidney involvement for quite some time now. Back when I was insured, I learned that I often have protein and blood in my urine. A urologist confirmed that I have some kidney damage. I am not able to follow-up with a specialist.

Can ANYONE relate to these issues? Infections? Fevers? Kidney issues? Frequent swollen glands? Severe food allergies?

And other than all of this, I have many other inexplicable symptoms... so many that I do not have time to write them all down, nor will I remember them all off the top of my head! I have many symptoms that point towards some form of arthritis as well (just as of the past couple of years or so-- long after the FMS arrived). I cannot even walk around a grocery store without needing a wheelchair now. My joints lock, pop, crack, ache, throb as if I'm going to fall apart. Stairs are so unbearable anymore, I have to crawl up and down them.

I've had symptoms that point towards neurological issues too. They thought I had MS, but as of 3 years ago, it didn't look like it with an MRI. They never did a spinal tap. But I still get the associated-symptoms, such as nystagmus, where my eyes jerk back and forth on their own, which often times occurs with outside stimuli, such as noises-- like the opening of a door. This symptom has not gone away. Maybe I should pop on over to the MS forum sometime too, to ask for opinions.

If I don't have MS, where is this nystagmus coming from all of the time?

I've had MANY weird symptoms over the years, which haven't gone away-- but they seem to get better, and then get severely worse. I'm sure there are some of you on here who are DX with autoimmune diseases as well as FMS. So, for those of you with FMS, do you relate to any of this? And for those with autoimmune disease... what do you think, just by reading this?

It's possible I just have FMS plus Sjogren's, which I know is not uncommon. My eyes are another issue. They are so dry always, they will literally ruin my day. There is nothing I do for them that helps. The dryness is UNBEARABLE. Feels like sand, grit, that never goes away, and my sensitivity to the light has become extreme. Sjogren's can cause horrible joint pain too, I know.

I have a feeling something else is going on, and I am SO sick of suffering day in and day out. I get worse every year, and I'm only 26! And the pain is TREACHEROUS; DEBILITATING! And it is progressively getting worse, which I know doesn't happen with Fibro.

Please help! Any opinions! THANK YOU.

Eden :-)
Posted 2/22/2014 6:50 PM (GMT 0)
Eden, I hope you can see a doctor. Fibro is not considered an autoimmune illness nor one that gets progressively worse. Almost all my illnesses are autoimmune but yet I have fibro, too.

A couple of years ago I started getting worse. My back was killing me and my hips and legs joined the party. I got so I had to use two canes to get around. Finally I saw an excellent rheumatologist, went through a lot of testing and found I had ankylosing spondylitis, which is autoimmune, that was causing the problem. By starting back up the ibuprofen with food, Tylenol, and given a muscle relaxer called Robaxin, I am feeling better than I have in years. The muscle relaxer made a big difference.

So, I do hope you can get checked out and on medication and a gentle exercise and stretching program. You are young and you should respond to treatment well. I'm in my 60's and have done great!

Sherrine
Posted 2/22/2014 7:35 PM (GMT 0)
I wish there was some way you could see a Dr. or specialist. I know in our city we have a few options if you have no insurance. Have you checked around in your city to see what might be available? We have a program where Dr's donate their time called project acess or neighboorhood health clinic that goes by a sliding scale. You might be surprised to see what is out there.

When I first got fibro I use to suffer with many of those issues. I was having a hard time accepting it was just fibro too. I had horrible yeast problems through my gut to poor healing in wounds. I never could seem to get well. I did improved after I stop work. I think I was in so much stress that I couldn't get proper rest. I am so much better, but ocassionaly have some weird symptoms that make me question my only fibro diagnoses. A few months ago I decided it wouldn't hurt to get reevaluated for other auto immune problems. I haven't gone yet, but I tend to go soon. I hope you can find some way to go yourself.

I would go on the MS forum and see what you get there. I know many here suffer with other auto immune problems too.
Posted 2/22/2014 7:52 PM (GMT 0)
might be CFS also - this can cause recurrent infections and swollen glands and fevers etc...like your body is always fighting infection...maybe pop over to that forum and ask there.

I get the above also and I believe I have CFS aswell, but still under diagnosis..its always better to talk it through with a doctor
Posted 2/22/2014 9:57 PM (GMT 0)
I have no insurance but I'm able to work out my tests and doctors' bills with the financial department. The local hospital I go to has a low income program I use.

Is there a free clinic near you?
Posted 2/23/2014 6:02 AM (GMT 0)
I REALLY appreciate those of you who have responded! Seriously! I lack so much support in my life that I appreciate every single bit of info that someone takes the time to give me in order to send me into the right direction. So thanks!

Sherrine, thank you for sharing your own story with me... I, too, am afraid that something is going on with my joints. I never used to have such terrible knee, ankle, foot, hand, wrist and finger pain and stiffness as I do now. I find myself crawling up and down stairs in my house, and also needing a wheelchair for long distance walking. The elbows and back are also much worse. The neck is a whole different story it is so severe.

I was instructed to maybe ask on the Lupus forum......I do have issues with my kidneys too, and my breathing has become more of a struggle..

You guys would not believe the trouble i have had in my state to get medical help. I had insurance for becoming pregnant, they took it away when it turned out to be gestational trophoblastic disease-- very rare-- (I seem to have reproductive issues, as well. Anyone relate?????). I had to have surgery for the false pregnancy to get the abnormal cells out so it didn't turn to cancer. The state took the insurance away from me due to not having a baby, even though my doctor at the time wrote them a letter begging them to let me keep it for the sake of my own deteriorating health. (He's the doc that thought I had MS).

But the state took it away from me anyway.

I have gone to hospitals around here, I have asked for charity care and all that. They were so stigmatizing to me that they would just send me home without doing much at all-- even though I had very very serious symptoms going on. I deal with a lot of stigma. A lot of people without insurance do have to deal with that, unfortunately.

I am working on getting Medicaid back.

Pennsylvania just seems to suck! In the next couple of years, the bf and I plan to move to Arizona. Does anyone from here live out there by any chance!? I am hoping the dry, warm weather will do me well, as well as the medical marijuana.

My concern is just the pain. It's everywhere and progressively getting worse. It is debilitating. I remember aching severely for years with Fibromyalgia, but not like this. I cannot move my eyes without them hurting severely as of the past couple of yrs. My joints.... my knees keep locking. My fingers, hands, wrists kill me. The pins and needles sensations even hurt. My hands are constantly like ice cubes, they don't warm up, which hurts me too. They're very red, white and blotchy. It's painful.

I have also had a headache for about 5 or 6 yrs which has never ONCE gone away ever. Can ANYONE relate to that?! Have you ever even heard of such a thing? It's ridiculous at this point. All I can do is cry and cry and cry.

Anything OTC does nothing to touch my pain. Nothing. I'm not big into medication anyway (although I am getting freaking desperate at this point)!!!!! mad

And I wrote a bit on the MS forum about this too- a year ago, I lost my menstrual cycle altogether. It was gone for 7 months and I had no sign of it coming back. They put me on birth control of course (which I hate) for free at Planned Parenthood. But what ever caused it to go away to begin with, I wonder? Anyone have any ideas????

Thanks so much again for responding- & reading- & caring!!!!!!

Eden :-)
Posted 2/25/2014 2:12 AM (GMT 0)
Eden, Like you I have been through the emotional wringer medically. I was and still am a questionable MS patient, I just gave up on that diagnosis. I do have autoimmune issues as well, much like yours. Thing is, with most diseases be it fibro, MS or Lupus, all that is being done is symptom treatment. In this regard, it matters not as long as you are getting that care. Find a free clinic to manage your symptoms, do not be so worried about "what" you have just get care. That's how I now live. Day to day, managing each symptom and relapse as it comes. Enjoying my life.

I hope you are able to finally get some measure of relief.

Much Love,
L
Posted 2/25/2014 7:17 AM (GMT 0)
Thank you very much, txcola. I am working on insurance at the moment....

Wish me luck!

Actually, the first person I need to see is a gastroenterologist. That area is my main concern-- severe problems for 3 years now. Should have been checked way back then instead of let go!

I'm glad that you're able to take it easy and enjoy your life now. It's very admirable. I hope I get to that point some day...

Eden :-)
Posted 2/25/2014 10:04 AM (GMT 0)
Hi! Have you looked into Reynauds Syndrom or Lupus? Sometimes cheaper health clinics are run by the local county. Call Rheumatologists and see if you can find one who will work with you financially. Reynauds on hands can be white, or dark.
Sjogrens affects kidneys as well as eyes and mouth. If breathing is issue could be MS, Lupis, Myositis. But you need to seek medical care before your Kidneys get worse (cut salt out of diet immediately).

Post Edited (mermaiden) : 2/25/2014 5:46:05 AM (GMT-7)

Posted 2/26/2014 2:21 PM (GMT 0)
Hi, mermaiden! cute name! :-)

I have suspected some of these issues in me as well... a few years back, my doctor could have sworn that I had MS... he was very concerned and ordered MRI of brain & cervical spine (this was back when I was insured). MRI came up clear at the time (this was 3 yrs ago about), but I was told that they should have also done a spinal tap. Nothing else was done. But severe neurological symptoms have remained ever since, sometimes waxing and waning, but always present. The nystagmus is my biggest concern, it's very common in MS people (my eyes shake back and forth on their own at times).

My breathing is certainly an issue. Has gotten worse within past year, especially upon deep breathing and when being out in the cold. I had one doctor mention lupus to me because of my kidney issues, severe joint pain (with fibro, it always used to be the muscles-- not it is the joints themselves), headache, worsening of splinter hemorrhages under nails, chest pain, mouth & nose sores, worsening fatigue, etc. But I was on the lupus form and it's amazing how different everyone else's symptoms can be! It's confusing for me because I don't know what to think. Only a doctor can help. I'm working on insurance!

I have also suspected Sjogren's because of my severely dry eyes (they can literally ruin my day all on their own-- no matter what I do), as well as RA. The joint pain has become completely symmetrical. I seem to have SO many symptoms that overlap and resemble different things. I don't know if I have Reynaud's... I do know a lot about it, but I don't have it where my hands turn blue or purple. However, they do turn very very white because they are always ice-cube cold.

Mostly, I am afraid of IBD, given my family history of it too. I have had SEVERE gastro problems for about 3 yrs (which is around the time everything else had gotten worse too), which should have been checked back then. I need a colonoscopy ASAP. When those problems are worse, my fevers and everything else is wrong too... I think it's the likeliest possibility.

Thanks for the input! I gotta get going to a chiropractor (my head and neck pain have become debilitating too & he's affordable)!!! I will talk to him about everything I can though, related & unrelated to chiropractics! See if he can steer me into the right direction too.

Love,
Eden :-)
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