Have you had high sedmentation rates or elevated liver enzymens come back in your blood work? My sed rate has been elevated for years, the liver enzymes is a new one. The last couple blood works up have been slightly elevated??
I've only formally been diag with Fibro about 12 years ago, but I believe I could have both. The fatigue doesn't bother me all the time. I just have periods of complete exhaustion and brain fog, then I'll return to normal and just hurt again.
Normally many CFS and fibro patients have a low sed rate. However, if you have a low cortisol level (common in many CFS patients), your sed rate can climb. Also... you may be starting to have some autoimmunity issues. I would seriously consider following up with your rheumatologist and you may also want to ask him about testing your cortisol level (AM level).
As far as your liver enzymes, do you know what your levels were ? I know having a cold can elevate your results... also, Tylenol and other medications can as well. You may want to have your physician re-check your labs.
Thanks for the information. I have scheduled an appoinment in 2 weeks for a checkup. As far as I know they haven't ever checked Cortisol, but they don't always tell you what they're looking at, I've had a ton of lab work done. My last visit, probably a year ago, I specifically asked him to make sure I didn't have Lupus and he ran some labs and said I didn't have Lupus.
The first labs that my liver enzymes were high, they were very high so the Rheumy re-ordered the test and they were okay the second time around. For about 2 weeks before the first test I had been drinking protein shakes so I thought that may have influenced the test, the nurse told me it wouldn't but I still thought it was possible. So I dismissed it when the 2nd test came back okay. Just a few weeks ago I had labs done for another reason and the dr mentioned my liver enzymes were slightly elevated. So that made me think about the previous tests. I will surely get him to retest when I go back in, I'm sure they'll have other lab work to do anyway. I'm going to get a copy of my reports so I'll have the results of all the labs.
Thanks again for the help, you've given some good information. I thought a high sed rate was common with Fibro. I guess they will eventually figure me out. My first Rheumy repeated labs every 3-6 months b/c he thought that some other issue my be developing, but geez that was about 10 years ago so you'd think it would be here by now. ( i know it sounds like I'm waiting for Christmas or something) So now I just go to a Rheumy every year or so for a check up and let them make sure my labs are okay.
I went to the state hosiptal back in May where they SPECIALIZE in fibro. My sed rate was 55 & should be lower. So, i guess mine is high? The other patients there (waiting rooms/conference said that wasn't normal. My dr. should be retesting in a month or 2.
Also my IGF-1 is 79. And she said it should be around 200 for my age. She TOLD me i have a growth rate of a 91 yr. old for being 35. So, now i'm going 2 a encronoligist in about a month. it took FOREVER 2 get in. Thing is once they wanna treat me; i fear my insurance WON"T cover the hormone shots. BUT i've always told my fam/friends i feel like an ol' lady in a 30 something body. I also was amazed that this LACK of producing hormones also causes EXCESS weight around the middle. I thought, "This all makes sense now"! Since ANYTIME i've lost weight i STILL have a big ol' belly. :( I've been praying that I will be able to get treatment for the growth hormone defic. Since the specialist said it will make me feel 1000% better & younger. ""ahhhh to feel young". That would be something new. ;)
Pituitary dysfunction is common in fibro/CFS patients. All of my hormones were low and I was prescribed steriods & HRT. And then I started a research protocol and couldn't take my medications anymore... I'm now taking natural supplements while I'm on this protocol that is aimed to cure the immune dysfunction.
Awww thank you for all u'r kind words & support. I am SO LUCKY to have a understanding doctor & for her 2 send me 2 all these specialists. She ROCKS!! I wish all of you could have such GREAT dr's. ;) I guess Oregon is a good place to have UMPTEEN medical problems. Since i've heard HORROR stories from others in different areas.
I'm SO happy i found ALL of you & this site. We ALL need 2 lean on one another in our time of need. Which happens to be often. I would be posting like CRAZY.... but i surf AT WORK. So, i don't always have as much time as i'd like 2 reply.
I feel TRULY blessed to have found all of you in the same boat. We can throw each other LIFE JACKETS when we r about to DROWN. ;)
I'm lucky as well. The endocrinologist that I see has been treating CFS patients since the '70's... long before physicians knew what CFS was !
The best thing to do if you have one of these conditions is to review all angles and be sure to read the information on immunesupport's website because they post treatments recommended by the experts. But also keep in mind... there are low-dose antibiotic protocols and anti-viral protocols that are successfully treating some fibro & CFS patients. The antibiotic protocols are even successfully treating some autoimmune diseases. For more information on that... google "Roadback Foundation".
Whatever you do.. don't give up and don't stop doing you research. I've found that many physicians don't know squat about my illness and the only thing they know what to do for fibro patients, is to write prescriptions.
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