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Old 09-26-2012, 10:31 PM   #1
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But is it really fibro?

I started a different thread about medication, but thought this was different enough to start a new thread.

I was recently diagnosed with fibromyalgia due to widespread, diffuse pain in my limbs, and when it's really bad, all over my body. I had seen several specialists with no answers, no bloodwork with major problems (though I did have an elevated sed rate, low potassium a couple times, low vitamin d, then later normal but on the low side of normal, and once elevated live enzymes.) Everyone says I'm fine. However, the pain keeps coming; it's deep with my arms and legs, it feels almost like it's coming from the bones. It also feels warm, not burning, just warm, but never to the touch. I'm also suffering from fatigue and mental fog.

Since I left all of the specialists stumped, my rheumatologist and later pain doctor declared it fibromyalgia.

Here is where my doubt comes in. I'm not sensitive in any of the trigger points. I've had that looked at 3 times by two doctors and those places do not hurt nor are they tender My rheumatologist says it doesn't matter; but it seems just so random "You have pain? Congrats, fibromyalgia!".

Additionally, I don't seem to have normal vs flares. I may have good days and bad days, but from what I read, people with fibro seem to have periods of time where they feel good, and other times where they have flare-ups of symptoms. I seem to have the pain all the time. Or it will be one moderately good day followed by a week of bad days. I don't know what to think.

One thing I'll say about the pain is that I think I've had it for as long as I can remember. One way I describe it is that it feels like what I was told was "growing pains" only I've never grown out of them. But it was infrequent as an adult, usually only coming on when I was REALLY tired. I associated and assumed the pain was from being overtired. Eventually it started happening more and more frequently - like going shopping I'd have to stop early because my legs hurt and I was just too tired to do more. And that kept ramping up over a few months until it was bad enough to put me on medical leave at work. That was 10 months ago.

I'm lost; I don't know what to think. I'd love to hear what everyone here thinks of my condition. Is it fibro, does it fit with what you've experienced? Should I keep pushing the doctors to search for other causes?

 
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Old 09-26-2012, 10:48 PM   #2
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Re: But is it really fibro?

I wish I had an answer for you but I am in your boat although I have not had anyone check me for trigger points yet because my doctor and insurance are slowewwwwwwwww! I have been waiting weeks just for my referral to a neuro doc, apparently I was not clear enough on my pain level! I have had a pretty good few weeks but all of my pain is returning in the last 2 days, why? My menstrual cycle will be starting in a day or two and instead of cramps and low back pain I get it all in my upper body? I would love some answers if I got the answer you did I would get a second opinion... Hope this helps and welcome

 
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Old 09-27-2012, 01:02 AM   #3
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Re: But is it really fibro?

My story is the same as yours. I wondered for a while if the doctors were right but after reading the posts on this board and the way the pain is described in certain areas, it's like I could have written any one of these posts myself. It's such an odd collection of symptoms. I don't have big flares and then good days. I have pain all the time. The only thing that changes is where it hurts and how much it hurts...and I never know from one day to the next. But I am sure that some people are misdiagnosed. I just decided to stop fighting it and treat the symptoms until there is reason to believe otherwise. I hope you find your answers soon !!!

 
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Old 09-27-2012, 08:30 AM   #4
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Re: But is it really fibro?

Hello & Welcome
I had probs for 11 yrs before actual pain set in. I went in to see a dr & told her what was going on. I told her that I'd read about fibro & allot like that but I didn't have the Tendar spots. She diagnosed me with chronic fatigue & sent me to a Rhum. He diagnosed me with fibro & calls chronic fatigue "a symptom", so unsure about all that. Anyhow, after so long I was just thrilled to have a name for it & to actually have drs take me seriously! I didn't really believe the fibro diagnosis. Then I had my first flare. Total pain, fatigue, migraine like headache & vomiting. That's when I went back to the Rhum & took him serious. It's been about 2 yrs now & yes I have the Tendar points. Not sure when they actually appeared. I notice them now because my 3 yr old climbs on me & manages to hit many of them! Especially my chest, under my arm pits, putter thighs & inside my knees. Not sure if these are all the known spots but they are mine. I have more but those are the ones always getting pushed on. Feels like I have a terrible bruise there & someone pokes it really hard. One of my drs says its supposed to feel like a pinch.
I had "growing pains" growing up also. Pain in my knees kept me awake often. I also had stomache issues & had tests ran on that. I am allergic to wheat starch & that may have been why. Not celiac. I also remember going through phases of extreme fatigue growing up. I look back now & wonder if it was depression. But as hard as things were growing up, I was a happy child so doubt it. I wonder if these are all pre-fibro signs. I see signs in my 12 yr old now...
I do think think there is something else going on, but I don't doubt my fibro now. I continue to see my drs & push for tests even though they've all been done. I feel like there is something goin on & eventually we'll figure out what.
My fibro pain & fatigue never goes away either. I do have good days but that's when the pain & fatigue isn't as bad & can actually get some stuff done. It's not even close to symptom free but it is better than normal & I'll take it.
Unfortunetly over the last few yrs, pain has only gotten worst. I do rely on a series of meds. I have to take them or I'm just miserable & won't move.
Mornings are awful. Right now I'm waiting for meds to kick in. I hurt so much & sooo uncomfortable... I keep my mind busy reading & playing games.
Anyhow, I do think that as time passes, you'll except it... It's unfortunet though But of you are like me & feel that something else is going on also, keep pushing for answeres & don't give up!
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 09-27-2012, 08:55 AM   #5
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Re: But is it really fibro?

Hi Vicki, I just replied to your other thread as well... If you have no tenderpoints and B/W is ok. At this point, I would say possibly ME/CFS or vitamin deficiency. What most of us mean, when we say good days and bad days..at least for me is that there are days when we are not flaring. I am in pain every stinking day, or as my hubby would say "theres always something wrong with you." YES...THERE IS! However, when I have a flare...my GOD back up! My flares come with fevers of 102 that last for months, bone pain, my blood pressure drops like a stone and I faint, I can't be touched, my skin crawls, I cry excessively, my joints feel like they are going to explode, I have tremors, shakes, chills, night sweats..you name it I've got it. I want my blood work done every 6 months from now on and/or everytime I flare. I recently fired my PCP becasue she wouldn't do my B/W (I've only had it done two times in 5 years). I have seen people who do B/W every 6 mos for five years and finally something will show up that points to autoimmunity. It is possible that you have something else, most with fibro do have some other dx (diagnosis) along with fibro or it rears its ugly head later. The problem is Fibro and ME/CFS usually show before other health issues. It is frustrating also that both Fibro and CFS have a stigma to them, that they are not real "diseases." So when people have this much pain and then no one cares (like they would for someone with cancer), we want to think we have something more, something worse. We feel awful, and Fibro and CFS can be completely disabling and make you feel helpless, and the lack of awareness of these disorders make things worse, because no one cares or believes or understands the amount of pain we are actually in. Take peace in knowing that here on this message board you are validated in your pain and you are not alone....

Last edited by Administrator; 09-28-2012 at 10:21 AM.

 
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Old 09-27-2012, 09:21 AM   #6
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Re: But is it really fibro?

Oh I have to agree! My husband is always saying: you never feel good, you're always grumpy, you're no fun, you're boring, ect. It doesn't matter how much you try to explain it, they don't get it. Boy do I wish I could have him in my shoes for a day. But even if he has the flu & I try to explain to him "try living with that", he seems to think he's dying & it can't be that bad! Grrr Unfortunetly it's worst! But we look ok. I puke & look perfectly healthy afterwords. I make myself do what I have to do & because I do that, I must be fine... Unfortunetly this is a horrible condition that no one understands. I'm sure most people think I'm just lazy. It sux.
I believe I had CFS that turned into Fibro or the Fibro ontop of the CFS...
I've had people tell me to get tested for this or that. Maybe you are deficient in a vitamin, ect. I've been tested for everything.
My husband used to say "I can't wait till you get better". Here's the thing, after 14 yrs I know better than to believe that anymore. I have excepted it & he should also. But now he says "I can't wait till they find out hats wrong with you!". Grrr
Unfortunetly people are more understanding if its cancer, ms, ect. Although I don't want any of that.. I just don't want this either! I try not to tell people I have fibro because people look at you like you are just asking for sympathy when all we want us understanding. I do have a friend with fibro. We knew eachother about 3 yrs before we found out about eachother! Lol I also have 3 cousins with fibro. Just met one about a month ago, I have a large family lol She manages with alieve which is awesome! I hope she can continue to do well with it.
Anyhow, people don't get it unless they go through it. I do think that if there was more info out there, it would help. They make pain & fatigue seem so mild compared to what it is!
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

Last edited by thefarm; 09-27-2012 at 09:24 AM.

 
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Old 09-27-2012, 10:01 AM   #7
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Re: But is it really fibro?

Yep, I agree. Are you married to my husband? Just kidding. No my hubby can be like that if he is under stress, he gets short tempered with my "disorder." However, I have sent him sooooo much research on it and made him read on things, it also helps that I am a nurse (he takes me more seriously...doctors don't but he does). Usually e is very supportive because he has met two other people with Fibro who don't work, don't take care of their kids, and are always WHACKED out on meds like oxy and morphine, and they have the audacity to say " I have Fibro"... He sees me at my worst where I am crying, rocking, fevers, chills for days and months and I still go to work, I still help with the kids and the house. So, I guess I am thankful that those two people he knows have made him more understanding. He knows it will never get better or dissapear but like I said when he is stressed out about something, my problems are irrelavent. So, I just have to stay away from him when he is stressed or in pain (he had spinal fusion in June), becasue he will make me worse. And that works for us.
My kids don't fully understand why mommy is sick all the time and the community doesn't get it. I have resolved to telling people when they see that I am looking like crap, and they ask, I tell them I have an autoimmune disorder and I have flares. For most people, when you use big non-specific, unfamiliar terms...they are quelled. I do not say fibro, I do not say chronic fatigue... like you said people think your just lazy. I do think now that I have started getting fevers with my flares, people seem to take me more seriously because you can't fake a fever. there is a difference between SIGNS and SYMPTOMS. Usually people have symptoms with fibro and no signs, so no one else can SEE what were feeling. I kinda got lucky with the fever thing..that sounds dumb but it sure makes people take me more seriously..
Plain and Simple..we need more awareness to our cause!

 
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Old 09-27-2012, 10:03 AM   #8
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Re: But is it really fibro?

I also have pain all the time - some days little pain/some moderate and some vile! For me my vile days are when I'm in a flair
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Old 09-27-2012, 03:00 PM   #9
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Re: But is it really fibro?

This really has been a great topic!
It's hard to say you're in a flare when it feels like you are always in a flare... This post has been able to clarify that for me it's good to see what others are going through

jessy - I know what you mean.. Unfortunetly vomiting sucks bad but it does help for my husband to see that. Make it more real to them I guess...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

Last edited by Administrator; 09-28-2012 at 10:21 AM.

 
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