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Fibromyalgia


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31 replies to this topic

#21 Snowbird

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Posted 29 January 2009 - 03:32 PM

Me too!

I started getting really sick early 90's. Was diagnosed a few years later in 94 with FM....my specialist/rheumatologist at the time told me that my constant joint pains and fevers were not consistent with fibromyalgia (FM) and that he was confident that I had something else going on (it sounds like a lot of us had/have 'things' going on as well, not just me). Anyway, he told me I had FM and undifferentiated connective tissue disease (UCTD)....still in that category only added difference now is that my blood work is showing high ANA.
Sending good wishes your way!

#22 Jeannie McClelland

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Posted 29 January 2009 - 05:39 PM

This topic keeps getting more and more interesting. :)

I always thought I was a 'toughie' until the tender point exam - she hit one that dropped me to my knees in tears! I couldn't believe just pressing on a point that wasn't over a nerve bundle could possibly hurt so much.
Jeannie McClelland
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#23 ozzy69

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Posted 30 January 2009 - 06:55 AM

Hi everyone,

I was diagnosed with fibromyalgia in 2006 and scleroderma in 2007. The problem have with the fibro is that once one doctor said "Fibro" , all the others would tell me that is the reason for all my problems. My ANA was negative at the time so my primary doctor would not send me to a rheumatologist. After much frustration I made an appointment myself and made my primary refer me. I had to drive over an hour because that was the only rheumatologist I could find that would take me for fibro. Needless to say that rheumatologist sent me to another because he thought I had sclero. By the time I went to the new rheumatologist my ANA was off the charts. Because I was diagnosed with fibromyalgia first, I had to struggle with doctors to find out what else is wrong with me. It is sad we have to fight so hard.

Much Hugs,

Nina Lynn

#24 tmgilbertpt

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Posted 30 January 2009 - 09:39 AM

Hello. I was diagnosed with systemic scleroderma in 2002. Recently my doctors have added fibromyalgia. Being in the medical community I encounter doctors who firmly believe in the condition known as fibromyalgia and others who totally oppose that such a condition exists. My pain doctor wonders why other doctors need to add the diagnosis of fibromyalgia when having scleroderma can account for all the intense body pain that I feel. As a physical therapist I still haven't decided on which side of the fence I lie. I do believe doctors give this diagnosis when they cannot explain or account for all the symptoms we may feel. I try not to get lost in the actual name of a diagnosis but instead focus on treating the symptoms I feel. tammy

#25 Lyn

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Posted 30 January 2009 - 02:49 PM

I was diagnosed by trigger point exam after all other tests were normal, and MRI was finally done and excluded the MS. I didn't believe there was a name for how bad I felt, so the doctor got his medical book and showed me the tender points to diagnose the FM. I had every one of them. I was so relieved I cried. I had to get this diagnosis after 3 years of other doctors, and went to a specialist clinic where they had several doctors look at me. When I went home and told my rheumatologist what the diagnosis was, and asked why he did not tell me this himself, he said "I didn't want to have you labeled"... what did that mean! Granted, this was in '84, so he had a little excuse. He had been treating me with arthritis meds, one of which sent me to the hospital with toxic hepatitis for 10 days and it took me 8 months to recover from that.

What makes me nuts is that every time I have to change my doctor due to insurance or moving, they just have to put me through the exam again to prove it to themselves, what agony! Makes me want to scream!

#26 lynne09

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Posted 18 February 2009 - 02:29 PM

My primary care doctor sent me to the rheumatologist because she thought I had fibromyalgia. When I saw the rheumatologist, I not only got the fibromyalgia diagnosis but CREST as well. What a shock! Then I read that fibromyalgia can start in childhood and it clicked. All those years that I labeled having an allergy flare (42 years total - started when I was 8) was actually a fibromyalgia flare but I can't truthfully identify the difference between a fibromaylgia flare and a sclero flare. I just know that it hurts, I ache all over, I have fever and chills and I am exhausted more so than normal. But then I have had insomnia since I was a little kid. Which comes first??

Lynne

#27 smac0719

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Posted 19 February 2009 - 08:42 AM

Very interesting topic. I was diagnosed with Fibromyalgia in 2007 by a previous rheumatologist. When I mentioned it to my neurologist, while undergoing testing for the brain fog and headache issues, she harshly scolded me and told me to never mention that to another doctor because they will think I'm crazy. Needless to say I was very taken aback and actually offended. Even though she doesn't believe it's a "disease" she could have addressed it better.

I really liked her and have gone to her for a few years. Unfortunately due to that I may seek another if I ever need the services of a neuro again.
I may have Scleroderma, but Scleroderma doesn't have me!

#28 KarenL

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Posted 19 February 2009 - 09:24 AM

Add me to the list Cathy.

#29 Sam

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Posted 21 February 2009 - 09:50 AM

I was diagnosed with fibromyalgia about a year ago. I take Lyrica for it. It does seem to help.
Sam

#30 SueVer

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Posted 22 February 2009 - 04:05 PM

HI, I was diagnosed with Sclero in May 2007 and last fall. My primary and my rheumatologist are trying to see if there is a link.

Thanks for asking.

#31 debonair susie

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Posted 25 February 2009 - 12:26 PM

Hi lynne09,

I hear exactly what you are saying! It has got to be so difficult to realize this all was likely a problem for you since your childhood!

If you were able to get a good nights' sleep, you might just feel like you've slept on a cloud, I would imagine.

Fibromyalgia certainly doesn't allow for a decent sleep pattern. I was diagnosed in the 1980s with Fibro, so I have great empathy for you. It is amazing how we tend to adapt to the hands we are dealt, isn't it?

Your second to the last sentence, I can relate very well with:
"...I ache all over, I have fever and chills and am exhausted more so than normal".

There are pain medications that are available, one of which has given me the opportunity to be able to sleep at night.
I'm sure you have been using one for years, but I know the memory foam really helps to relieve me of painful pressure points while working on sleeping.

I haven't done so yet, but would also like to take this opportunity to welcome you to this wonderful family of ours! This "family" is loving, caring and supportive. When folks have like experiences, they share.
I so appreciate everyone here and I am so glad that you have found your way here and are posting!
Special Hugs,

Susie Kraft
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#32 debonair susie

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Posted 25 February 2009 - 12:30 PM

Hi SueVer,

I am so pleased you have found us and are posting! I welcome you with open arms and hope you find the wonderful support here as comforting as I do!

Please let us know how you are doing?
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)