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Old 05-02-2012, 01:01 AM   #1
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Unhappy Wrong about fibro diagnoses need help

It has been about a month and a half since my doc diagnosed me with fibro. I have been taking savella for about 1 month now(possibly a little longer). I've been doing research and reading lots of posts on here.. I really do not think I have fibromyalgia. I think I was wrongly diagnosed.

My pain is not as intense as everyone else has described.
The symptom that I tryed to explain to my doctor has not been cured by the savella either..

I guess the big thing I need help on is my actual symptom and what y'all think..

It's not a deep pain. It's like the pain you feel when you get a fever and everything you touch irritates your nerves. I could just say irritable but that doesn't seem to describe it completely. Anyway I need help! I will be returning to the doctor soon though.


Also need support in weaning off of savella! Which I hear is a nightmare

 
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Old 05-02-2012, 09:47 AM   #2
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Re: Wrong about fibro diagnoses need help

Not sure about weining off Savella, I like it. Cymbolta was a nightmare to go off of...
I didn't beleive I had fibro at first. Then I had my first flare & went back to my Rhum... But pain wasnt bad like now. At first my old back injury hurt more. Then my neck, shoulders & upper back started hurting. I was havin headaches atleast 4 days a week. As it progressed i got allot of travelling aches & pains. But, it has all gotten way worst the last 2 yrs. The pain is severe now. Seems like all it does is get worst... But I know there is something else goin on & I have a doc now trying to figure it out.
Have you had ALL tests done? I just wanna make sure you've been tested for everything...
I honestly believe that if you think it is something else, then keep getting tests done. If you need to see another doc, then do it.
When I was first put on Nuerontin then cymbolta, I didn't think they did anything for me. But I tried going med free & pain was awful. So I know they work. Just can't seem to tell unless you dont take them anymore..
Anyhow, you may just have mild fibro right now... If that's the case, it could get worst like mine did...
__________________
~♥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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Old 05-02-2012, 11:40 AM   #3
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Re: Wrong about fibro diagnoses need help

I haven't been tested for anything except a tsh test for my thyroid. And it was under active. Idk if I have it or not but I haven't had any other tests :/

I'm the one with no insurance right now. Just trying to feel better! The savella has given me a lot more energy and helped with fatigue but the aches that I have always had are still there. I'm just so confused about the whole thing

 
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Old 05-02-2012, 12:11 PM   #4
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Re: Wrong about fibro diagnoses need help

I'm sorry... I've went without insurance & it sucked... Luckily the problems I had at the time were manageable. I couldn't go without it now... Is there any way you can apply for state insurance? Worth a shot...
Unfortuetly all the tests you need are expensive & there is allot... Those are supposed to be ruled out before being diagnosed with fibro...
Are you taking thyroid meds? I take Armour & works well for me. Other ones make me feel worst.
What are you doing for vitamins?
Low vitamin B, vitamin D, ect can cause you these problems. It would take a lot of vitamin D to over dose on it. I really think you should get vitamin D3 5000 iu. Also vitamin B. you can take upto 4000 mg of omega fish oil. I take one in the morning & 2 at night. It may make you tired so aim for at night. Also Magnesium will help! A multi vitamin, zinc. I'm trying msm right now. Anyhow, if you are dificient in any of these it'll help to take them! Unfortunetly not having insurance really puts you in a hard spot...
How are you sleeping? I love my muscle relaxer, puts me to sleep & I stay asleep. You can get Melatonin & that will help you sleep! For me if I take it I still wake up all morning but many people do well on it. I give it to my daughter because she has a hard time sleeping. It's natural, no side effects & cheap.
Anyhow, I wish I were more help but it's a start. Taking vitamins, getting rest, eating healthy, exercise & just aiming for a good quality of life will help!
I think most of us are used to being a wife/mother & taking care of everyone's else. It's easy to put yourself last. You have to learn to say no & put yourself first. You have to take care of yourself to be able to take care of others.

Hugs!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 05-02-2012, 02:15 PM   #5
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Re: Wrong about fibro diagnoses need help

Many people with fibro are not as bad as the folks on this board. And flu-like aches are a classic sign.

Still, there should have been a few more blood tests done before a conclusive diagnosis of fibro was made! CBC, tests for inflammatory arthritis or other autoimmune disease, lyme if you live in a lyme-endemic area, maybe a few others.

 
Old 05-02-2012, 08:28 PM   #6
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Re: Wrong about fibro diagnoses need help

To get Texas state insurance you have to be almost dying. Thank you for all these suggestions and ideas. I bet it's some sort of defeciency.. But then again I have had this for at least 2 yrs. I am very concerned about maybe having some sort of arthritis. I do have pain in my joints, including when the weather changes. I have a hard time sleeping. I have been told before to try the magnesium. My doc prescribed me elivil to sleep but I heard it was an anti depressant and immediately decided against it. She said it had been used for decades as a sleep aid, but i don't care lol. It gave me nightmares!! Anyway I'm starting to babble I think. Thanks for your advice!


Ooo and do y'all think it's anything to do with anxiety? I have it really bad

 
Old 05-02-2012, 09:39 PM   #7
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Re: Wrong about fibro diagnoses need help

Maybe depression with anxiety... But I have derealization which may be caused from my anxiety so anything is possible...
I wonder if you just have a more mild form. If that's the case, taking care of yourself best you can may help prevent it from getting worst...
I have joint pain but tested for RA a couple yrs ago & was negative. I've read that joint pain isnt fibro & also that it is...
I take a muscle relaxer called Flexeral. It works great at putting me to sleep & staying asleep. You could call your dr & ask them to send in a prescription.
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 05-02-2012, 09:49 PM   #8
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Re: Wrong about fibro diagnoses need help

I will have to ask her about it. I will stay up for hours not being able to sleep. Or I will fall asleep and toss and turn!! I'm not depressed it runs in my family though; same with anxiety, OCD, bi polar disorder and who knows what other horimone/chemical imbalances..
Luckily I've only noticed the anxiety and I have in control for the most part

What is derealization? I'm not very familiar with it?

 
Old 05-02-2012, 09:51 PM   #9
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Re: Wrong about fibro diagnoses need help

And I would love to get my joints scanned or tested however they do it to see if they are imflammed.. Just money wise ughh

-_-

 
Old 05-03-2012, 12:23 AM   #10
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Re: Wrong about fibro diagnoses need help

When my fibro first started my only symptoms were pain in my sternum and anxiety. My doctor and I did tests for 3 to 4 months before we ruled everything else out like diabetes, thyroid issues, lupus, mineral deficiencies, anemia, and so many others I don't remember. There are no tests to prove you have fibro, you have to exclude everything else.
Now, 4 years later, I get awful pain everywhere but mostly in my back, neck, and sternum, I get the skin sensitivity, stiffness, nausea, headaches, dizziness, anxiety, depression, fibro-fog, and many, many other things.
It's going to be hard with you not having insurance, but make sure that you can rule out other conditions. They are all treated differently!
Best of luck, and make sure to keep us in the loop
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Old 05-03-2012, 10:49 AM   #11
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Re: Wrong about fibro diagnoses need help

I lay in bed wide awake. But when I take a muscle relaxer; it knocks me out in about 20 mind & I sleep all night I also notice it helps with pain. I hurt less taking if at night...
Derealization is a Dissociative condition. You feel foggy; like your in a dream. Its like a drugged feeling. Its not uncommon; happens to everyone. People will get it if they haven't slept & need sleep or if you're really stressed. I have had it 24/7 for 13 yrs; never went away. Very frustraiting. Its rare to have it chronic like this & very frustraiting. I don't really feel alive. Disconnected. Unfortunetly it doesn't numb pain.. my phycologist says I have ptsd which caused this. He says I have to talk about past events to get over it. I dunno... I am being tested for Growth Hormones Deficiency which is in the pituitary. I have the symptoms for it. I read that derealization can be caused from a pituitary disorder so I'm wondering if that's the cause. If I have the deficiency it is treatable & hopefully would cure this. I'm tired of this. I remember Colors being brighter & feeling happy. I used to get Burt's of energy I just had to run off. I felt so alive. But it all just stopped when I was 18. Took 11 yrs to know what it was...
anyhow; hopefully you can get started on muscle relaxers! Really think they'll help you!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 05-04-2012, 05:07 AM   #12
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Re: Wrong about fibro diagnoses need help

and did they check you for tender points? do you have any?

 
Old 05-04-2012, 01:09 PM   #13
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Re: Wrong about fibro diagnoses need help

No she pressed a few spots I think. None were painful. She talked about it and stuff though. Thanks tori I might have to try that! I slept good last night though

 
Old 05-04-2012, 02:18 PM   #14
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Re: Wrong about fibro diagnoses need help

That's good! Now you jut need more of those!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 05-04-2012, 02:19 PM   #15
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Re: Wrong about fibro diagnoses need help

Quote:
Originally Posted by haleyyface View Post
It has been about a month and a half since my doc diagnosed me with fibro. I have been taking savella for about 1 month now(possibly a little longer). I've been doing research and reading lots of posts on here.. I really do not think I have fibromyalgia. I think I was wrongly diagnosed.

My pain is not as intense as everyone else has described.
The symptom that I tryed to explain to my doctor has not been cured by the savella either..

I guess the big thing I need help on is my actual symptom and what y'all think..

It's not a deep pain. It's like the pain you feel when you get a fever and everything you touch irritates your nerves. I could just say irritable but that doesn't seem to describe it completely. Anyway I need help! I will be returning to the doctor soon though.


Also need support in weaning off of savella! Which I hear is a nightmare
I hope your doctor is wrong too because having fibro is a nightmare. You do need to know though, that everyone feels the pain differently - some people are completely disabled from it; others work; others can even exercise or work part-time. If you put 10 of us in a room, I'd bet we would all describe the pain different.

 
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