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Jeannie McClelland

Fibromyalgia

32 posts in this topic

Hi Everyone,

 

There seems to be a lot going on in the medical journalism on the subject of fibromyalgia. That was one of my initial diagnoses even before they settled on scleroderma. I was just wondering if a lot of us have also been diagnosed with fibromyalgia. I have the feeling there might be a lot of us. Just call me Curious Cathy! :lol:

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie

 

 

I was diagnosed like you with fybromyalgia first and then about 5 months later with SSc.

 

Jensue

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I was diagnosed with Fibromyalgia in 1996, or thereabouts. I think I continue to have "cycles" of Fibro ~ but I do wonder if it wasn't just Sclero. all along. Right about now, I'm not real sure about a whole lot. Still feeling pretty down and out ~

 

BUT as always, I'm thankful for this site and all the wonderful people associated with it.

 

Much love,

Nina

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I was diagnosed with fibromyalgia back when they called it fibrositis. I got sick with it in 1981 and it took 3 years to get the diagnosis, and by then I was hardly able to walk, they thought I had MS it was so bad. A long recovery from the worst of it, and it has been a stable roller coaster ride since. I say stable, because even though I get flares, I get treating it fast and I haven't been in a wheelchair since '85. I was diagnosed with the sclero in Dec of 2001.

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I was diagnosed with fibromyalgia about 12 years ago. Sclero was diagnosed 3 years ago. I also wonder if I had sclero way back then!

 

Sherion

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I was first diagnosed with fibromyalgia in April 1998 and Sjogren's in June 1998. I was diagnosed with CREST in 2006, though I think I had it in 1998, because I had CRE at that time.

 

Nan

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Hi all,

 

in Finland fibromyalgia seems like a trash can where doctors put you when they can not come up with anything else.. It seems that only a very small percentage of "fibromyalgia patients" really have fibromyalgia, and in most of the cases it's really something else. You really have to find a good doctor in an order to get a proper diagnosis.

 

Take care,

Emmi

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Epasen

 

'fibromyalgia seems like a trash can where doctors put you when they can not come up with anything else.' This is just how my consultant seems to think about FM (mine was diagnosed by a previous Rheumatologist 6 months before the SSc diagnosis), he said that all the body aches & pains are due to the SSc & the Raynaud's!

 

I'm not sure if I ever had FM but was just the start of the SSc & Sjogren's (now diagnosed with as well), all I know is that I still get an awful lot of aches & pains mainly in my knees, hips, lower back, shoulders & hands.

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Yes, I definitely have fibromyalgia. I have all 18 tenderpoints! I have had all of my doctors locally saying I have it and my rheumatologist at Hopkins says that I definitely have it. I do know that some doctors just say that when they can't think of anything else, but in my case they're correct.

Nan

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Interesting topic. Fibromyagia seems to be the only thing one Rheumatologist felt safe diagnosing me with. That was in 2003 or 2004. Most of the pressure points were sensitive and I really ached all over, especially my feet and toes. Most of those aches are much less than they used to be. I have thought that I really have Sjogrens and Scleroderma for about 3-5 years now.

 

My dentist doesn't believe that Fibromyalgia is an actual disorder, he is of the opinion that it is a name for "we really don't know what is wrong". It is a hard place to be in as a patient. To be told that you have something, and then to have another doctor saying that it really isn't a diagnosis.

 

Mando.

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Jeannie,

 

Thanks for asking this question. I've wondered about this a lot.

 

My scleroderma and fibromyalgia started about the same time. Most of the doctors in my world put them together or think there is no such thing as fibromyalgia. My scleroderma and fibromyalgia flares seem to go together also.

 

Little Red

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I agree! Quite an interesting topic!

 

I was diagnosed with fibromyalgia FIRST (officially in Jan 2007), and my current (soon to be old!) rheumatologist still has this listed as one of my diagnoses (along with myositis, SLE, and r/o Scleroderma).

 

I, too, have issues with "tender points" joint and muscle pain and weakness....however, although I'm an RN and actually teach patients about fibromyalgia (and completely believe it's a valid medical condition), I've never thought I had it personally. Other than the pain (as if that's not enough!), I had no other issues (no sleeplessness, brain fog, IBS, etc.) which are very common associated conditions.

 

I was also told I had Lyme Disease (back in summer 2004), and still test positive for antibodies when ELISA tests are done...but my rheumatologist said sometimes the Lyme antibody test can be false positive when there is autoimmune disease present. Has anyone had this happen as well?

 

Great topic!

 

Stef

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Hi Stef and All,

 

This is getting to be really fascinating!

 

I did have some of the other fibro issues: poor sleep and brain fog. It was the first diagnosis I got, pre-dating the sclero diagnosis by about 3 years. I'd been inclined to disbelieve there was such a thing, but the pain doctor I was seeing was so competent and nice that when she said it is definitely a valid medical condition, I was convinced.

 

Now Lyme Disease - there's a story. That I definitely had, no doubt about it. I even remember the tick! But that was about 17-18 years before the sclero diagnosis. The funny, or not so funny, thing is that my one son also had Lyme Disease and about 5 years later was diagnosed with sarcoidosis, another immune system disease. Hmmmm....

 

I hope we get more responses and thank you all who have posted so far.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jeannie and others,

 

I was diagnosed with fibromyalgia after my scleroderma diagnosis. That was almost 5 years ago. I was diagnosed at UCLA and have since moved to northern California. I know my symptoms of both fibro and sclero started way before my diagnosis. I, too, wonder if it has been sclero all along. When I go into a flare (Raynaud's, joint and muscle pain, etc.) I can't tell which is which anymore. I'm on plaquenil, neurontin, etc. but when a flare comes on, there is really no relief. I just wait it out.

 

Thanks for bringing this up!!

 

Ann

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Hi, I have only been diagnosed with fibromyalgia, along with the RET so who knows what's brewing or how long till I get a diagnosis of sclero...if ever.

 

Hugs,

Piper

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I also have Fibromyalgia (among many other things.) It helped serve as an inspiration for our Fibromyalgia page.

 

Originally I was diagnosed with fibromyalgia and chronic fatigue syndrome (CFS) "plus" - the "plus" standing for all the symptoms that fell outside of those areas. It took them years to figure out most of the "pluses".

 

An interesting article on our fibromyalgia page is:

 

Microcirculation abnormalities in patients with fibromyalgia - measured by capillary microscopy and laser fluxmetry. The peripheral blood flow in FM patients was much less than in healthy controls but did not differ from that of SSc patients. The data suggest that functional disturbances of microcirculation are present in FM patients and that morphological abnormalities may also influence their microcirculation. PubMed. Arthritis Res Ther. 2005;7(2):R209-16.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley,

 

The article on microcirculation abnormalities in Fibromyalgia patients was a good one.

 

I was living in Britain when people had just started talking about Fibromyalgia and Chronic Fatigue Syndrome. Most of the older doctors seemed to scoff at the idea they are 'real' illnesses, but the younger ones were all going "Ah hah! That would explain a lot...."

 

Were you diagnosed with FM by trigger points and/or the exclusion principle - we've excluded everything else so it must be FM? I have most of the trigger points~ They'd done an enormous amount of lab work but couldn't find (except for the ANA, at the time) anything to account for the FM symptoms other than - fibromyalgia.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi, Everyone!

 

Jeannie, I'm on board with everyone who mentioned that this was a great topic to start, as it does afflict so many of us!

 

I also, have fibromyalgia, having been diagnosed in the mid-eighties, it really boggled my mind. The doctor did not waiver in her diagnosis of the fibromyalgia, though. As was mentioned...it sure seemed like the doctors seemed to pin this to us, just like a virus is a catch-all. However, we DO now understand that in fact, it IS a very real illness, not to be diminished in the medical world, or otherwise.

 

Shelley, thanks for posting the link...I'm going there to read it in a minute!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jeannie,

 

My fibromyalgia was diagnosed based on the entire checklist of diagnostic criteria, including the tender point exam.

 

I'd never even heard of fibromyalgia (nor CFS) way back then, so I had no idea what a tender point exam was. All I knew was that my doctor was hurting me, terribly, over and over again. He finally got to a spot that caused me excruciating pain. So I jerked away from him and said, "Don't you EVER hurt me like that again!"

 

I was astonished by my reaction as much as he was. Fairly safe to say that I probably flunked the tender point exam that day. But I had one full month of testing at a major medical center before diagnosis. They were bewildered by all the tests I managed to flunk, and each round would qualify me to go up to the next round, I think, rather like playing video games but with a lot more time, money and discomfort involved at each level.

 

So yes, it was also by exclusion. Although they weren't able to exclude everything then, many symptoms were still basically unexplained until years later. Sometimes things are just too complicated for easy answers. But, it was at least a step in the right direction.

 

I'm always totally astonished to hear stories of people who just went to their general practitioner for one short appointment, got a tender point exam, and a firm diagnosis of fibromyalgia, right off the bat! I know it happens, but it surely wasn't the case for me; I've never had so many medical tests, before or since, as I did getting that initial diagnosis.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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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!

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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

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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

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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!

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