Surely it can’t all be fibro! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Surely it can’t all be fibro!

Talice profile image
7 Replies

I really need so advice,So I’ve had fibromyalgia for many many years along side a few other health conditions so it a constant juggle. Then suddenly at the end of last year my hair started falling out massively, Im falling over and dropping thing all the time, my lymph nodes have swelled and not gone down, my joints are unbearable and I’m having hideous night sweats. They’ve ran bloods for my thyroid which came back all fine thankfully and so now they just say it’s fibro, like I’m never going to get Ill with anything else because fibro is responsible for everything! It’s so frustrating to suffer and have no answers again.

Is It not odd this many year in to have a change in severity of symptoms? I get so annoyed at feeling fobbed off. I’m fighting a battle I’m just not winning and feel like I’m drowning. I was very excepting for years that this is the cards I’ve been dealt but this change has knocked me for six.

Just some reassurance would be greatly appreciated x

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Talice profile image
Talice
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7 Replies
SaphiM profile image
SaphiM

The enlarged limp nodules suggests some infection. A full blood count might give more answers.

It might be worth getting a copy of your blood results and posting them on the Thyroud UK forum. Of them what drs say is normal isn't ! You'll also be able to see if any other blood results are borderline. My GP said my B12 was normal as it was just a couple of points within the range, yet I had all the symptoms of B12 deficiency. They cleared up once treated with B12.

Talice profile image
Talice in reply to

Thankyou I’ll defiantly do that as I just feel there’s something else going on, you know your own body better than anyone. Just frustrated at being fobbed off xx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Your right, sometimes gut instinct tells us to follow something through, I agree with SaphiM, ask for a full blood count , hope you can get an appointment fairly soon, think we all’s feel like we are being robbed off at one point or another. I was lucky eventually to get a good doctor that I feel 100percent confident with , but looking back I really did not stand my ground enough to get the right help, take care x

Aralyn profile image
Aralyn

Fibro can progress over time, and mine has always gotten worse in sudden spurts and then I will have to get re-used to the new "normal". Although any new symptoms, especially of sudden onset, need to be looked at thoroughly before settling on fibro as the cause, particularly since their are so many diseases that like to accompany fibromyalgia. If you feel you haven't had a thorough enough look at the new symptoms, push for more tests until you are satisfied.

I think l would question that diagnosis. It sounds horrendous!

Please seek a second opinion 😔

sherbear1 profile image
sherbear1

You should get all your endocrine hormones checked. That's what I would do anyway. And I truly believe the thyroid doesn't show what it really is doing all the time. I was put on 2 mg of estrogen. No progesterone cuz I have no uterus. I'm overweight and should have it stored in my fat but do not as others might. I was able to go down to 1 mg but if I go less my body can't function. When those get so low your body cannot live like that. I minor deficit some people tolerate very well. My whole endocrine system is all over the place. I believe the endocrine system is a huge part of fibromyalgia. estrogen loosen up my joints and muscles gave me moisture in my body which I have not had since I was very small and generally helped me more than any other thing besides armour thyoid. Hope you feel better soon and get some answers. It's worth a check especially with new symptoms. It was making my hair fall out to, the estrogen imbalance. I also had terrible balance issues.🌺❤️

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