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Old 08-04-2012, 08:11 PM   #1
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Diagnosed with fibro but I think something else is going on

I'm a 26 year old female. Almost five years ago I was diagnosed with Fibromyalgia (although I had had symptoms for 7-8 years prior to that). I have full blown body pain 24/7 that is consistently getting worse over the years. I have tried MANY different medications, none of which did anything, but right now I am taking 10mg of Ritalin twice per day, which doesn't help with pain but it does allow me to sleep for longer periods of time during the night without waking up. But I still cannot reach slow wave sleep. I have also been diagnosed over the years with:

plantar fasciitis
patellofemoral syndrome
Non-specific arthritis
gastroesophageal reflux disease
irritable bowel syndrome
asthma
spina bifida occulta

Some of my symptoms include: constant full body pain, extreme pain in my knees, neck, feet and hands (primarily the area below my thumb, I drop things because of it), lower back pain, constant headache (it's been YEARS) and I will occasionally get a searing pain through the right (back) side of my head always in the same location, occasional migraines, blurry vision, sore eyes, extreme thirst, brain fog, constant fatigue (to the point of having difficulty driving and trying to stay awake etc), body spasms when at rest, unable to hold bladder very long, constipation with occasional episodes of diarrhea (I suspect a food intolerance, I have been tested for celiac and it was negative), constantly bloated, always nauseated and will throw up usually a few times per week, heartburn, occasionally get tonsil stones, the feeling of motion sickness while sitting down and reading to the point of throwing up and having to sleep it off, intolerance to cold, always feel cold, random toes/fingers fall asleep, irregular periods (sometimes only 1-2 periods/year), bruise easily, occasional petechia, occasional sleep paralysis, trouble concentrating, frequent dizzy episodes, very irritable, allergies (getting tested soon). I've had a few panic attacks over the years but they are rare. I'm probably forgetting some symptoms because I'm freaking exhausted and can feel my brain shutting down.

k, here are some quick test results because it logged me out even though I clicked remember me but anyways:

positive ana speckled pattern 1:80
elevated cholesterol 5.14
elevated total bilirubin 22.5 (normal range 3-17)
low iron 12 (normal range 21-310)
low vitamin d (I wasn't given the exact numbers)

b12 was very low but I was taking injections so now it's at a more normal level

My GP said that I "probably have polycystic ovarian disease" and all they want to do is prescribe birth control to try and regulate my hormones instead of discovering exactly why they are abnormal in the first place.

estradiol 173 pmol/L
fsh 6.4 IU/L
lh 20.1 IU/L
progesterone <1 nmol/L
prolactin 10 ug/L

I can upload all the tests with borderline/normal values as well if preferred.

So what do you think? Is there something else going on? Actually, my GP said "there is definitely something else going on" when he saw my positive ANA. I thought that was a strange thing to say, but I would have agreed it's something aside from fibro even before the ANA test.

The rheumatologist said I was negative for RA and negative for lupus.

Last edited by Eyrie; 08-04-2012 at 08:19 PM.

 
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Old 08-05-2012, 08:21 AM   #2
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Re: Diagnosed with fibro but I think something else is going on

hello and welcome to the boards.
i would suggest you tell your doctor to test you for sjogrens disease as well. i would love to know what your doctor is thinking by putting you on ritalin? are you bipolar also? i did not see it in your list. many of us fibrobrats take sleeping pills for sleep. ambien and lunesta being the fav's of fibro docs.
i hope you find friends here as i have. there are some very caring people here and we are never mean to anyone.
peace,
bluelakelady

 
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Old 08-05-2012, 09:30 AM   #3
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Re: Diagnosed with fibro but I think something else is going on

Thank you. I will ask to be tested for sjogrens, thanks for the suggestion. The Dr. who prescribed Ritalin is a rehabilitation specialist, and she said she generally doesn't prescribe it to fibro patients but so far it's the best thing that's worked for me. It doesn't really let me focus as much as I thought it would (I do not have ADHD) but it leaves me so exhausted at night that I'm able to sleep a little better. If I miss a dose I will get a major flareup. I don't think she wanted to try sleeping pills, or at least not yet. No, I am not bipolar. Do people generally reach deep sleep with ambien or lunesta? Thanks for the warm welcome, this has been very frustrating for many years and it's nice to talk to people who understand and have suggestions.

Last edited by Eyrie; 08-05-2012 at 09:32 AM.

 
Old 08-06-2012, 08:18 AM   #4
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Re: Diagnosed with fibro but I think something else is going on

hi,
can't speak for others but i know they help me sleep. i was on ambien for 12 years before it stopped working and i switched to lunesta but it made my mouth taste nasty so now i take restoril. it's an older sleep med. i sleep the deep sleep of babies. heaven.
i think i see the logic in your docs thinking. ritalin will keep you up, but focus? no. that it does not do. when my son was little it was tried on him. he is bipolar and adhd.
can't say i agree with your doc but if it works for you that's what matters most. i think your body would be safer on a sleep aide. but, who am i to argue with a doctor? giggle. inside joke. giggle. i argue with them all the time. giggle.
peace,
blue

 
Old 08-07-2012, 04:26 AM   #5
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Re: Diagnosed with fibro but I think something else is going on

Quote:
Originally Posted by bluelakelady View Post
hi,
can't speak for others but i know they help me sleep. i was on ambien for 12 years before it stopped working and i switched to lunesta but it made my mouth taste nasty so now i take restoril. it's an older sleep med. i sleep the deep sleep of babies. heaven.
i think i see the logic in your docs thinking. ritalin will keep you up, but focus? no. that it does not do. when my son was little it was tried on him. he is bipolar and adhd.
can't say i agree with your doc but if it works for you that's what matters most. i think your body would be safer on a sleep aide. but, who am i to argue with a doctor? giggle. inside joke. giggle. i argue with them all the time. giggle.
peace,
blue

I also take Restoril and find I get a decent night's sleep with it. I took ambien and drove a car, crashing it into my parent's fence. Not good. It was my mom's car. So no more ambien and lunesta for me.

 
Old 08-08-2012, 09:46 PM   #6
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Re: Diagnosed with fibro but I think something else is going on

I think I forgot to mention some symptoms: quite often I will get hand and foot cramps, and occasionally the inside of my nose will get very dry and extremely sore/bleed.

bluelakelady, heh I argue with them as well. I will see about trying out a sleep med. Also forgot to ask, what symptoms did I describe that it might be sjogren's? I'll be giving my Dr. a call tomorrow.

Quote:
Originally Posted by waters04 View Post
I also take Restoril and find I get a decent night's sleep with it. I took ambien and drove a car, crashing it into my parent's fence. Not good. It was my mom's car. So no more ambien and lunesta for me.
That's not good. Perhaps I'll try going for Restoril, first.

 
Old 08-09-2012, 08:03 AM   #7
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Re: Diagnosed with fibro but I think something else is going on

blurry vision, dry eyes, nose dry and bleeding, pos ana, cold all the time. how is your dental health? nausea, vomiting. bruising easily. got dry skin issues? gee, without your origional to refer back to it's hard to say the rest. those were the ones that sparked my interest. good luck at the docs. hope for your sake you don't have it and the test comes back neg.
peace,
blue

Last edited by bluelakelady; 08-09-2012 at 08:06 AM.

 
Old 08-09-2012, 02:19 PM   #8
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Re: Diagnosed with fibro but I think something else is going on

Hello,
You remin me of me, many of the same symptoms. I'm thankful tramadol & flexeril help with my full body pain. It doesn't get rid of it, but tolerable so I can move around easier.
I have the vomiting also. It is a fibro symptom, just a very rare one.
I have thyroid issues. I'm hypo. My tests show that I'm almost hyper thyroid yet I have the hypo symptoms, especially weight issues, brittle hair & nails, constipation, edema, ect. I am taking Iodine now hoping it will help...
Are you active? Over do it & push yourself all the time? I know its a strange question when you're always exhausted. But I do that & makes everything worst. This time of year is the easiest & over doing it make pain & fatigue worst. But come next month & until about June, if I over do it I get migrain like headaches & severe vomiting. Vomiting with or without the migrain. The only way to prevent it is by resting & not over doing it.
Anyhow, prob not much help but hopefully something I said atleast helps alittle...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 08-09-2012, 03:51 PM   #9
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Re: Diagnosed with fibro but I think something else is going on

Quote:
Originally Posted by bluelakelady View Post
blurry vision, dry eyes, nose dry and bleeding, pos ana, cold all the time. how is your dental health? nausea, vomiting. bruising easily. got dry skin issues? gee, without your origional to refer back to it's hard to say the rest. those were the ones that sparked my interest. good luck at the docs. hope for your sake you don't have it and the test comes back neg.
peace,
blue
Hmm my dental health is the only thing I have going for me. No cavities, my teeth were straight until my wisdom teeth came in and messed them up slightly but I had all 4 wisdoms removed almost 5 years ago (that was a very painful few weeks). I have a damaged tooth from back in kindergarten (ran up a slide and smashed a small piece of it out) but recently the filled chip came out and a much larger hunk of that tooth came out with it. My teeth are sensitive to hot/cold/sugar for the past few years when they never used to be. Otherwise I think they're ok.

Yes I have dry skin but it's not that much more than the average person's. I think. Should I scan and upload my results that I have so far? It might be easier for you to see. Thanks for all your help!

Quote:
Originally Posted by thefarm

Hello,
You remin me of me, many of the same symptoms. I'm thankful tramadol & flexeril help with my full body pain. It doesn't get rid of it, but tolerable so I can move around easier.
I have the vomiting also. It is a fibro symptom, just a very rare one.
I have thyroid issues. I'm hypo. My tests show that I'm almost hyper thyroid yet I have the hypo symptoms, especially weight issues, brittle hair & nails, constipation, edema, ect. I am taking Iodine now hoping it will help...
Are you active? Over do it & push yourself all the time? I know its a strange question when you're always exhausted. But I do that & makes everything worst. This time of year is the easiest & over doing it make pain & fatigue worst. But come next month & until about June, if I over do it I get migrain like headaches & severe vomiting. Vomiting with or without the migrain. The only way to prevent it is by resting & not over doing it.
Anyhow, prob not much help but hopefully something I said atleast helps alittle...
I've tried both tramadol and flexeril, neither of which did anything worth staying on them for, at least for me. Glad to hear that they help you a little. I'm pretty sure I've had some sort of thyroid testing but I've never seen the results so I'm not sure exactly what was tested. I am active, I have a physically taxing job that I just started working 55-60 hours/week at and the only way I'm able to work that much now is the Ritalin. I could never have done that before. Still, I'm exhausted, my body is screaming in pain and can't really do anything when I get home (I have trouble driving home sometimes, it's really not good). I was this way before when I only worked 40-45 hours/week (even less years ago) but I wasn't on a helpful medication and really suffered. I almost always overdo it and pay for it everyday. Also get way more flareups because of it. I know I shouldn't be working that much but it's just how it ended up right now.

The weather also affects my pain tremendously. I do best in hot but DRY heat areas, and where I live it's the opposite-it's hot but HUMID in the summer and the winters can get down to -50C. But the pain that is most affected by the weather is 'bone' pain. I mean, it affects all my types of pain but that one the most.

My grandma was diagnosed with polymyalgia many years ago. And within the last couple years my aunt (her daughter) and my sister were diagnosed with fibro.

 
Old 08-09-2012, 04:07 PM   #10
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Re: Diagnosed with fibro but I think something else is going on

I honestly would see another rheumatologist, and ask to have the ANA repeated along with other tests for lupus and other connective tissue disorders and thyroid. Your bilirubin being high and iron so low makes me think you may be breaking down your Red blood cells, called hemolytic anemia, which can occur in lupus. It seems not right to me that your Dr (rheum) is ignoring a positive ANA in light of your symptoms. Do you have a CBC result and/or liver function tests? A coombs test can be run for hemolysis. Even though your celiac test was negative, you can still have gluten intolerance without celiac disease, causing the GI problems. I agree you have more than FM, and you need a good, interested doc who will get to the bottom of it so you can benefit from treatment specific to your problem.

 
Old 08-10-2012, 07:38 AM   #11
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Re: Diagnosed with fibro but I think something else is going on

yea, go ahead and put them up here. let's see what we can see, giggle. my teeth started out with the same sensitivity. my skin is about the same as yours. some days are dryer than others but seldom have it crack and bleed. usually just my hands.
you are most welcome. giggle.
peace,
blue

Last edited by bluelakelady; 08-10-2012 at 07:39 AM.

 
Old 08-10-2012, 12:04 PM   #12
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Re: Diagnosed with fibro but I think something else is going on

That's why you hurt so much, the headaches & vomiting... You are working more than your body can handle. The only med you may actually need right now is to work less hours... I don't know how you are doing it but ouch!
I have slowed way down to control my fibro. I still over do it, especially these days, but I don't work anymore. Just doing to much on our farm, garden, rental house & 4 messy kids a husband & brother staying with us. Any time now I will over do it & end up vomiting. That'll be the first sign it's getting bad again.
Anyhow, I really hope you can get some rest so you feel alittle better...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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