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EllaForgotten

New member
Joined
Sep 3, 2016
Messages
8
Reason
DX FIBRO
Diagnosis
05/2015
Country
USA
State
Alabama
I'm new to the forums and have been reading a bit. I have so many symptoms that no doctors (and I see many) will give me an answer or solution other than medications that will make me sicker. I feel like I'm slowly dying, literally, and I can't for the life of me understand why doctors simply shrug me off and won't help when I tell them I have ZERO quality of life. Not joking here either.

Brief history: "lukewarm" diagnosis of Fibromyalgia in May 2015, and I say lukewarm because the ancient rheumatologist says "Probably fibromyalgia." They took 22 miles of blood the day I saw that guy and my labs came back with a TON off. Liver enzymes elevated, and sooooo much more, many of which are inflammation markers. Even with all that was wrong I was told I couldn't possibly have any AI disease, though the liver specialist said I have autoimmune hepatitis. The liver issue is in remission due to taking prednisone for 3 months earlier this year, but I DO NOT believe AT ALL that I have AI hepatitis and.. I won't get into all of that here. I believe it's NASH (non-alcoholic steatohepatitis.. liver inflammation due to fatty liver). I had a liver biopsy, btw for diagnosis.

I was put on prednisone for 3 months and all the stuff in my labs that were out of normal range (and there were MANY) are back in normal range. While on the highest dose (40mg) the first week.... I felt like a MILLION bucks! I felt NORMAL! I didn't have pain! I had energy! But it ALL went downhill after the first 5mg taper. My adrenals are okay (been checked by and ends), but I have pre-diabetes now because I ended up with Cushings Syndrome from the prednisone. I'm VERY high risk of diabetes due to mom and sister passing away from diabetic complications. And yes, the prednisone made me gain a TON of weight in a short period of time. My avatar is from about 4 yrs ago when I still felt somewhat normal, or at least nothing like I am now.

I have every awful symptom and was also diagnosed with peripheral neuropathy with all the HORRIBLE burning, tingling etc.. like fire ants bit my feet and hands. GI problems and so much much more.

I can only assume that with the fibro there may be another AI that they haven't nailed down yet. Not sure. I know even before the doctor took those labs I felt like death and could no longer shop, walk well, drive, clean house, or cook. I'm basically an invalid. AND.. lucky me, I have sleep apnea now. I use an oral device because I can't tolerate those cpap things.

To make matters worse, I ended up with a mildly torn rotator cuff AND a frozen shoulder. I had surgery for that August 1st (2016) and have been in absolute HELL since. I think I'm in a flare of fibromyalgia, possibly something else because even my bones hurt all over.

I have an appt with another rheumatologist in a couple of weeks, another neurologist... and I spend SO much time crying because of the pain. The norco I take for my shoulder recovery at night BARELY takes the edge off.. that's how powerful the pain is.

Due to the above I'm also depressed.. VERY depressed.

I don't and can't take a lot of meds because I'm on Eliquis (TIA in April 2013), so that means I can't take NSAIDS or anti-depressants or anti-anxiety meds. I also can't take natural remedies for chronic inflammation.. like Tumeric or Ginger because of the blood thinner.

I go to PT 3 days a week and it's making the body pain worse. I know I'm supposed to push myself to heal my shoulder and regain use of the arm... but it's getting more and more difficult as my muscles are absolutely STIFF, PAINFUL.. and so unwilling.

I'm sorry this is long. I needed to get it off my chest. I have no support network and my husband is indifferent and often just irritated with me. No one to talk to.

Last but not least.. I gained a ton of weight and need to lose it, especially because of the pre-diabetes. All I know is the pain. All I have is the pain, and it has it's teeth sunk in pretty deep right now.

Thanks for listening... prayers for all who suffer with this horrible problem.
 

EmmaLVee

Active member
Joined
Apr 4, 2016
Messages
42
Reason
DX FIBRO
Diagnosis
08/2015
Country
US
State
PA
EllaForgotten - my heart goes out to you! So much on one person's plate, no wonder you feel overwhelmed (and despaired). It does sound like Fibro (I love the "probably Fibromyalgia" diagnosis - if he felt what we go through on a daily basis, he wouldn't be so lackadaisical.) Aside from Fibro, you know your body best, so don't give up on finding out what's wrong beyond what they've diagnosed.

Was your Titre off or did you have a positive ANA when they tested your blood? I had a high Titre and a positive ANA when my rheumatologist tested me last August, but said it wasn't Lupus or anything auto-immune after testing something else. I don't really understand WHY but oh well.

I saw in another post that you are starting Topomax - I am having to wean myself off but that was one of the things that really helped me, so hopefully it's a positive for you as well.

My neurologist - compared to my rheumatologist - is someone who actually seems to help me. I'd let that doctor know everything and see what they think (not that you already wouldn't).
 
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