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Old 04-03-2009, 09:57 PM   #1
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diagnosis Fybromyalgia

This was my diagnosis today.

Started four years ago wth the pain and has progressively gotten worse comes and goes. BUT four years ago I would have jerking as well where my arm would fly up in the air without me wanting it too...that lead to a diagnosis after a bunch of electrodes or whatever stuck to my head of Epilepsy...Without me ever having a seizure...and so I was on seizure medication for two/three years and got off of it because I thought the diagnosis was false.

So I have little faith in doctors and that is just one example. I thought I could run my symptoms past you folks and see if you think the diagnosis is right of if I should get a second opinion..


Whatever this is, so far it is undiagnosed.
I am seeing my rheumatologist tomorrow for the blood results to rule out ankylosing spondylitis and rheumatoid.
I am posting here to see if it sounds familiar to anyone, so that maybe some ideas could be thrown at me that perhaps my doc is overlooking.

Severe hip pain
pelvic pain
Knee pain
shoulder pain
finger pain
elbow pain
neck pain
inner thigh pain and but as if I had done a hundred squats
chest pain/pleurisy
Very bad stiffness
It comes and goes, but each time it gets meaner and stays longer. I mean this aint no candy pain, it is severe at times.

vibrating sensation leg & foot


Moving around can ease the pain, but if I stand in one positiion to long or sit to long it is bad. Or if I do something physical and then rest the pain becomes extreme during rest.

Nausea started couple of months ago and just feels like I am on the verge of vomitting.
so so so tierd all the time

 
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Old 04-04-2009, 07:25 AM   #2
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Re: diagnosis Fybromyalgia

hi storm,
welcome to the boards. ask about Restless Leg Syndrome. it can affect the whole body, not just the legs. it causes arms to jerk way up in the air for no reason, legs to jerk, feel crampy, itch like bugs are on them. it feels like a seizure, but is not. something shorts out in the nervous system off and on. similar to seizure in appearance.
i mention this because you stated your arms jerk about. i have RLS in my whloe body. even my head jerks when it hits hard. i find just relaxing and letting it happen helps. it's weird, trippy and strange. so i just trip on it when it comes. trying to stop it only makes it worse for me.
the rest of what you list could be fibro. best to rule out everything else first.
keep us posted on how you fare.
peace,
bluelakelady

 
Old 04-04-2009, 09:32 PM   #3
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Re: diagnosis Fybromyalgia

Quote:
Originally Posted by bluelakelady View Post
hi storm,
welcome to the boards. ask about Restless Leg Syndrome. it can affect the whole body, not just the legs. it causes arms to jerk way up in the air for no reason, legs to jerk, feel crampy, itch like bugs are on them. it feels like a seizure, but is not. something shorts out in the nervous system off and on. similar to seizure in appearance.
i mention this because you stated your arms jerk about. i have RLS in my whloe body. even my head jerks when it hits hard. i find just relaxing and letting it happen helps. it's weird, trippy and strange. so i just trip on it when it comes. trying to stop it only makes it worse for me.
the rest of what you list could be fibro. best to rule out everything else first.
keep us posted on how you fare.
peace,
bluelakelady
From what I have read movement brings relief, though temporary, from those symptoms. I guess my leg symptoms could be a seperate issued, though the doctor said it was fibro..and the jerking..But the buzzing when I would move my eyes or head and the one time eletrical shock sensation is a strange one. With all my other symptoms...I don't know. I just don't want to think my rheumatologist is playing guessing games with the amount of suffering I go through almost daily.
I have four kids and I want to be better.
So why I really posted in this section is to see if those suffering from fibro agree with my docs dianosis or think he could be mistaken.

I took the neurotin he prescribed and felt like I was going to puke all night..


I dont know if it is related, but it seems I have been over emotional lately..Like my emotions don't fit the situation and things fly out my mouth I wouldn't normally say..

 
Old 04-05-2009, 07:26 AM   #4
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Re: diagnosis Fybromyalgia

it's not a guessing game it is a ruling out game. that takes time and tests. for your sake i hope it is not rheumatoid arthritis or osteo. fibro is still a tough call for any doctor. there just isn't a test yet to confirm it. they, like us are walking blind in a sense. have patience and be persistant.
i know the nausea well, and the emotional out bursts of "not me" words. in time you will be better at being aware ahead of time and those emotions won't swallow you up. often my feelings were raw and felt out of control. not so much anymore. i suppose i have learned to live as i am with joy in my heart for each waking moment, even if that moment is full of pain.
when do you see your rheumy again? remember doctors are tools we use. they are not a faith we have to trust or believe in. they just have to be open minded, know how to listen, and be willing to look deeper every time we ask them to. i fired alot of doctors in my search for the right team to work for me. i have alot of doctors and they all know they work for me. i am the team leader. my body. that makes me the boss.
hang in there. it is a journey. are your family supportive? are your kids old enough to help you out with the "stuff" around the house? i have 5 kids, all grown and raising their own babies. giggle, some of my babies, babies are teens now. how time flies.
peace,
bluelakelady

 
Old 04-05-2009, 11:19 AM   #5
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Re: diagnosis Fybromyalgia

Quote:
Originally Posted by bluelakelady View Post
it's not a guessing game it is a ruling out game. that takes time and tests. for your sake i hope it is not rheumatoid arthritis or osteo. fibro is still a tough call for any doctor. there just isn't a test yet to confirm it. they, like us are walking blind in a sense. have patience and be persistant.
i know the nausea well, and the emotional out bursts of "not me" words. in time you will be better at being aware ahead of time and those emotions won't swallow you up. often my feelings were raw and felt out of control. not so much anymore. i suppose i have learned to live as i am with joy in my heart for each waking moment, even if that moment is full of pain.
Yeah, I guess alot of the outbursts have to do with just being pain, but I also spoke with someone about it and they think it may be hormones as well. I had a partial hysterectomy about four years ago, leaving one ovary. I don't know maybe I'll make an appt. to see my gyn for that just in case.
Quote:
Originally Posted by bluelakelady View Post
when do you see your rheumy again? remember doctors are tools we use. they are not a faith we have to trust or believe in. they just have to be open minded, know how to listen, and be willing to look deeper every time we ask them to. i fired alot of doctors in my search for the right team to work for me. i have alot of doctors and they all know they work for me. i am the team leader. my body. that makes me the boss.
hang in there. it is a journey. are your family supportive? are your kids old enough to help you out with the "stuff" around the house? i have 5 kids, all grown and raising their own babies. giggle, some of my babies, babies are teens now. how time flies.
peace,
bluelakelady
I am not supposed to see him again for six weeks. I think I am going to try for a second opinion. I mean it may be fibro, but the severe back and hip pain make me wonder. Plus I have pitted fingernails and after hearing on tv they are the window to our health I looked it up and Psoric (sp) arthritis came up..Mabe I am overthinking it, but I am just so tierd of this constant pain. Even going on the fieldtrip with my son to the children's museum really upset me. Watching the other parents standing around talking...I couldn't..I could stand for a few minutes, but then have to sit, then have to stand...it made my eyes tear up just thinking, wondering is this going to get worse..

Oh and rheumatoid has been ruled out.

Thanks for talking with me blue, if it wasn't for you I would feel very ignored and it is comforting to have someone listen.
They need a hugging smilie here.(((hugs blue)))

 
Old 04-05-2009, 11:22 AM   #6
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Re: diagnosis Fybromyalgia

one thing I wanted to add, which is probably indicative of fibro is my so called "brain fog"

It has even been as bad as me dialing peoples phone numbers on the microwave and then all of a sudden realising..."what am i doing?" LOL
Loosing things all the time, important things. Bills, keys, purse, etc.

 
Old 04-05-2009, 11:58 AM   #7
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Re: diagnosis Fybromyalgia

I am beginning to wonder if fibrmyalgia isn't getting too much blame for other medical problems????? I guess it is easier for a DR to say its "Fibromyalgia" rather than looking into other health issues...I don't know..but it seems to be a excuse for many illness's now days.....

 
Old 04-05-2009, 12:08 PM   #8
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Re: diagnosis Fybromyalgia

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Originally Posted by dolejaly View Post
I am beginning to wonder if fibrmyalgia isn't getting too much blame for other medical problems????? I guess it is easier for a DR to say its "Fibromyalgia" rather than looking into other health issues...I don't know..but it seems to be a excuse for many illness's now days.....
That is what is worrying me.

 
Old 04-05-2009, 12:14 PM   #9
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Re: diagnosis Fybromyalgia

duh I just read my first post. I had copied and pasted from my very first post in another section soI didn't have to re list all those symptoms. So part of it says not diagnosed while the other part said I had been diagnosed. lol sorry.
I had been diagnosed Friday with Fibro, ignore the undiagnosed part.

 
Old 04-05-2009, 05:49 PM   #10
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Re: diagnosis Fybromyalgia

Quote:
Originally Posted by Miracle Storm View Post
That is what is worrying me.


I know what you mean. I have been having different illness's lately and a few months ago I was diognosaed w/ "fibro"...well at first I thought , well I am not crazy that would explain a lot of my illness's lately...Well, but other things started to happen that I deep down inside feel that is not connected and now had led to me to believe that the fibro is getting a lot of blame and the real reason is going undiagnosed......

 
Old 04-05-2009, 09:44 PM   #11
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Re: diagnosis Fybromyalgia

Yeah.

Now today my head was hurting so bad and had such nausea I had to go to the hospital and cried my eyes out until they gave me a pain shot and some phenegren

 
Old 04-06-2009, 03:26 AM   #12
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Re: diagnosis Fybromyalgia

Quote:
Originally Posted by Miracle Storm View Post
Yeah.

Now today my head was hurting so bad and had such nausea I had to go to the hospital and cried my eyes out until they gave me a pain shot and some phenegren

Dang,I know that feeling. I have not done it in years and really fight out the head aches w/ the pain meds at home, but I have had no choice but to end up there at times. I just feel like an idiot at times when I try and tell them ALL that I am feeling, because they look at me like I am nuts(mind you for awhile there I was beginning to feel I was)...LOL....

I have had a head-ache now for 3 weeks, but it is on the top of my head and in my neck, and I can barely move my head, although I do have some spinal issues, and recently found out there is some issues w/ my heart, but they say nothing serious, they blame "fibro" on everything....I am no DR, nor have any fancy letters after my name, but I think there is something more going on there....But, I can't get them to listen to everything. Some doctors don't even believe in "fibromyalgia", which does not help in some situation.

I have been having severe problems w/ my ankles feeling as if there is a rubber band around them, which interferes my sleep, my legs,feet and ankles have some swelling, which then I started to have problems w/ my heart of racing and feeling like I was falling, especially when I would lay down. I wore a heart holter for 48 hrs and they found that my heart beats a few beats too many and I need to be on a beta-blocker...But, the head aches all started around the same time as the increase issues w/ my feet/legs and heart racing, of course I read that it is caused by the fibromyalgia, I just don't believe it and I feel more needs to be looked into....I have had perfect blood pressure all my life and up in the last week it has went out of whack....I don't understand, and believe me stress is not a factor...If I was going to have medical issues from stress it would have happened along time ago, so it seems to be the guess of "fibro" as the cause..."yea right"...lol.....

 
Old 04-06-2009, 10:28 AM   #13
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Re: diagnosis Fybromyalgia

Hi Miracle, just wanted to suggest that you get your thyroid checked and get a copy of the blood work and look up some info on thyroid problems. I only suggest this because with fibro you could have thyroid problems. I am hypothyroid (hashmotos disease) and when my thyroid goes all messed up I have worse and sometimes very severe joint and back pain. I identify with you when you talked about the field trip and not being able to stand up for any length of time. I am now a grandmother but I remember so well how bad that was and even yet with the grandson what a lack of energy I have. Unfortunately when my children were young I didn't have a doc who would check things out and I just suffered, I didn't know any better then. They always said my thyroid was fine because the TSH was within range. Well it wasn't Ok because I need a lower TSH and if they had bothered to do the other thyroid levels they would have found that out. Instead I suffered with needless pain and fatigue.

There are also other auto immune issues that could be causing you problems, don't give up. Keep plugging away, you are worth it and so are your children.

Glojer

 
Old 04-08-2009, 04:51 PM   #14
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Re: diagnosis Fybromyalgia

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Originally Posted by Glojer View Post
Hi Miracle, just wanted to suggest that you get your thyroid checked and get a copy of the blood work and look up some info on thyroid problems. I only suggest this because with fibro you could have thyroid problems. I am hypothyroid (hashmotos disease) and when my thyroid goes all messed up I have worse and sometimes very severe joint and back pain. I identify with you when you talked about the field trip and not being able to stand up for any length of time. I am now a grandmother but I remember so well how bad that was and even yet with the grandson what a lack of energy I have. Unfortunately when my children were young I didn't have a doc who would check things out and I just suffered, I didn't know any better then. They always said my thyroid was fine because the TSH was within range. Well it wasn't Ok because I need a lower TSH and if they had bothered to do the other thyroid levels they would have found that out. Instead I suffered with needless pain and fatigue.

There are also other auto immune issues that could be causing you problems, don't give up. Keep plugging away, you are worth it and so are your children.

Glojer
thank you. (((Glojer))

 
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