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Author Topic: Any one with fibromyalgia  (Read 5524 times)

Ms Peak

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Any one with fibromyalgia
« on: February 08, 2022, 05:44:41 PM »

Hello folks.

Is there anyone on forum that has fibromyalgia ? If so what symptoms did you have at diagnosis and how did the GP diagnose and select treatment?

Thanks

Ms Peaks x
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Polpringle

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Re: Any one with fibromyalgia
« Reply #1 on: February 08, 2022, 09:19:29 PM »

Hi I was diagnosed with Fibromyalgia 7 years ago, started with muscle aches & insomnia then went on to develop electric shock feelings and burning skin (like sunburn) across my shoulders. Was treated with Amitryptiline for sleep, Codeine for pain & gabapentin as well as Fluoxetine. Was a complete and utter Zombie and gained 3st. Came off all meds 3 years ago and started working for myself as a dog walker. I have the occasional flare up but can deal with it and rest as much as I can.
It’s symptoms are so vast and different for every person and a big crossover with Peri symptoms x
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Ms Peak

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Re: Any one with fibromyalgia
« Reply #2 on: February 09, 2022, 09:31:01 AM »

Hi polypringle

Thanks so much for taking the time to reply and share your experience with me.

I have had the sunburn pains and fatigue for some years so its time to chat to the gp.

Best regards

Ms Peaks x
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Dotty

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Re: Any one with fibromyalgia
« Reply #3 on: February 09, 2022, 09:36:03 AM »

Hi fibromyalgia is quite often wrongly diagnosed when it’s actually menopausal symptoms x
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Hurdity

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Re: Any one with fibromyalgia
« Reply #4 on: February 09, 2022, 09:45:55 AM »

Hi there - when I had ongoing aches and pains and feeling very tired etc my doc wanted to refer me to a specialist to investigate whether it was fibromyalgia. At the time I was on HRT but I wanted to know if reduced testosterone was the cause. The doc said we cant go testing everyone for testosterone just because they feel tired.
 docs to say - there there we dont know what's wrong with you but have this diagnosis (which is the name given to a collection of symptoms), Once you have it they wont investigate any more.

Anyway at the time ( 7 years ago) I went to a private doc and she prescribed testosterone and the symptoms went ( and my libido improved!) and I have been getting it on NHS ever since.

There are several causes of fibromyalgia syndrome (and ME and CFS) as I understand it - which can be post-viral ( as in post-viral fatigue syndrome which is no longer used  as a term unfortunately), underactive thyroid - sometimes undiagnosed and sub-clinical, as well as menopause - low oestrogen and low testosterone. I would want to eliminate or treat all of these before accepting such a diagnosis. eg I have a friend who has underactive thyroid (Hashimoto's) - but hers is a T3 problem. Docs diagnosed fibro. She had to see a private doc and she started to take T3 and her fibro symptoms disappear though re-appear when the balance is wrong. So she doesn't exactly have fibromyalgia as a disease in itself, but she suffers from the syndrome (which is what it is) if her thyroid is up the creek.

Other women on here have been diagnosed with CFS or fibro by one doc and have gone to another doc who has prescribed HRT and the symptoms have gone.

I say all this to highlight that it is not simple. The symptoms are all real and valid but the explanation and diagnosis may not always tell the whole story and may mask or prevent treatment that can help.

I hope you manage to sort out the cause of your symptoms

Hurdity x


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Taz2

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Re: Any one with fibromyalgia
« Reply #5 on: February 09, 2022, 11:35:01 AM »

Another fibro one here. Diagnosed in 1995 by myself after initially having been told by my GP that it was CFS/M.E. my symptoms were/are fatigue, insomnia, burning in muscles, muscle aches, brain fog, feeling like I had a fever but temp normal, depression, electric shocks in spine and skull. I had all of the tender points and all of my pain was symmetrical. I was referred to a rheumatologist. I was prescribed amitriptyline which worked excellently and enabled me to begin to learn how to pace myself which I still have to do now. I hated having to do that but it was/is the only way. When I'm feeling fine it's still difficult not to go mad and do EVERYTHING while I have energy but then, two days later, it's like I've been flattened.

It's a painful condition and latest findings (small trial) are that the immune system is involved which is a relief to those of us who are told it is all in our minds! As Hurdity says it's important to rule out other things. I'm on HRT but not testosterone. HRT made no difference to the fibro symptoms. My symmetrical symptoms are what steered me and then the GP and rheumatologist to a definite fibro diagnosis but this was 27 years ago and I'm not sure what the diagnostic criteria is now  :-\
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Ms Peak

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Re: Any one with fibromyalgia
« Reply #6 on: February 09, 2022, 07:57:04 PM »

Hi ladies.

Thanks for all your replies. In the past I have had thyroid issues, arthritis etc ruled out oh plus MS back in my 40's as I have an essential hand tremor.

I do tale HRT and have done for a few years, no libido issue as many women suffer from.

Years of burning pain, soreness, and fatigue.  Taking a supppement for low B12 but otherwise nothing of note.

Hopeful to find a solution

Ms Peaks x
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Polpringle

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Re: Any one with fibromyalgia
« Reply #7 on: February 10, 2022, 08:04:02 PM »

Good luck finding an answer. I remember my specialist saying there were pressure points on the body that relate to Fibromyalgia & when he touched them I was on the ceiling!! (Some not all of them) try to keep a strong mindset (hard when you’re in pain I know) x
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