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#808924 - 02/28/13 10:38 PM FMS and CF or are you being mis-diagnosed?  
Joined: Feb 2013
Posts: 41
Maggie25 Offline
Maggie25  Offline

Joined: Feb 2013
Posts: 41
West Australia
I ask the above question because that's exactly what happened to me. Before I was diagnosed by a Rheumy that I had FMS/CF I was also diagnosed with Graves disease by an Endocrinologist, and had a Hysterectomy followed by Oophorectomy. That can lead to other problems. However, what the doctors missed for a long time was that I also have Systemic Lupus and after going through my medical files etc., I've probably SLE for a long time. Anyone suffering with FMS and or CF should be reguarly tested for ANA, ENA and TFT, because FMS could be part of a deeper problem, or even a warning sign of things to come as you get older! Sorry I do not want to alarm anyone, but you really need to become very pro-active when a Specialist (rather than a GP) tells you that you have FMS/CF. To be properly diagnosed with FMS and or CF it should be done by a Rheumatologist as it's part of their field of expertise. Plus your employer is more likely to take notice and believe you when you need time off if your FMS/CF has been certified by a Specialist. Margaret

#851131 - 01/17/14 02:01 AM Re: FMS and CF or are you being mis-diagnosed? [Re: Maggie25]  
Joined: Jul 2009
Posts: 213
IH8FMS Offline
IH8FMS  Offline

Joined: Jul 2009
Posts: 213
I was diagnosed with fibromyalgia in 2000. Lately my pain has gotten like 100% worse, and I have started to lose my hair... in big ugly clumps and bald spots. I worried because both my mother and her sister, my aunt, had lupus. I had a pile of labs done last week... I finally got a call from the doctor's office... the nurse told me that my labs were back, and the ANA was positive. "Does that mean I have lupus?" I asked and she said well, he didn't want to say for sure since it was a low titer number although it was positive, and he wanted to "just keep an eye on it" for now. So I guess I'm still in limbo. I may or may not have lupus… I hate the not knowing! All my other labs, she said, were okay. So I get to wait. Again. Or still. I want to know exactly what I'm dealing with so I can deal with it, come to terms with it, all that owning a situation and taking my power back stuff, you know?

Ever think Hell is probably just a big old for-ƒʁƐ@Ҝ!И₲-ever waiting room? I would insist on some more tests except... I have NO insurance.

Last edited by IH8FMS; 01/17/14 02:02 AM.

Be Well,
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#916086 - 12/05/16 04:44 AM Re: FMS and CF or are you being mis-diagnosed? [Re: Maggie25]  
Joined: Nov 2016
Posts: 10
DDtop Offline
DDtop  Offline

Joined: Nov 2016
Posts: 10
London UK
Hi in the UK esp being male you struggle to get a diagnoses easier to get blood out of a stone!
Have Raynauds to which they grudgingly confirmed never want to do anything with Fibro but a place called RLIHM which give me acupuncture they said thought Fibro my sister has it and others one side have issues in that area sister and i are similar.
But now trying to get to Raynauds clinic as mine is dire get so cold had foot issue other day they used a dopplar and said have very little blood flow in feet and poor nerves as could hardly feel them touching.
trouble is i don't always feel cold unless a chill then frozen my autism place said one of the things with Asperger's is that don't process the cold so i can change colour with legs going purple and not cold.
but also going back to speak about lupus as took a picture when had been out in sun for a morning nurses at hospital said does look lupus looking rash on face& my lips going a bad red colour like blood shot.
trouble also with likes of fibro is that once done they often try to heap things on that when it's something else so have to be aware of it as much is done to ignorance&laziness on there part.
As we all present "difficult symptoms"

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