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sruggling to cope with fibromyalgia

Kazzza1976 profile image
21 Replies

fibromyalgia

Hi

I was diagnosed with fibromyalgia last month. Pins and needles are becoming more frequent in my hands and scalp and sometimes I feel I am losing my grip. I feel wiped out and exhausted to the point when I’m off work I just end up sleeping all day. Pains in fingers are awful. I am waiting to go to physio to help to manage the pain. There is a 2 month waiting list.

does anybody else feel the same. Exhausted and pin and needles more frequent ?

thanks

Karen

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Kazzza1976 profile image
Kazzza1976
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21 Replies
Painny profile image
Painny

Sorry to hear that Kazzza, no one knows what this beast is like, it’s multifaceted. I cannot comprehend the amount of symptoms I get and the one you described. Sometimes I like to go to Switzerland 🇨🇭 for an injection that ends your life without even realising it but can’t afford.

I hope the physio works for you. I have done loads, the best one is hydrotherapy.

Wishing you better xx

Kazzza1976 profile image
Kazzza1976 in reply to Painny

Thankyou for taking the time to reply. And Thankyou for your get better wishes. Can I please ask what hydrotherapy is ? X

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to Kazzza1976

Hydrotherapy is exercise done in a warm water pool

Kazzza1976 profile image
Kazzza1976 in reply to Hazel_Angelstar

Thanks Hazel I will look intoIt

Painny profile image
Painny in reply to Kazzza1976

You are welcome, hydrotherapy is a gentle physio in a warm pool. It’s really good xx

in reply to Painny

How are u feeling painny message me anytime xxx

Painny profile image
Painny in reply to

Thank you 🙏🏻 Lulu, I’m struggling, staring into space from severe pain

Hope you feeling OK xx

in reply to Painny

Yes me to I have severe headache and sweats it's horrendous xx try to stay cool I think the heat has really took its toll on us fibro lot x

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

When first diagnosed it can be difficult finding a treatments which help best for you, and can be trial and error to. Also finding the balance that allows you to be active /live your life and pace enough that you don't push yourself too far into a flare up

happytulip profile image
happytulip

Have you had your B12 levels checked and your Iron Overload Bloods? Would be interesting to know what your levels are? Your GP can do them

Kazzza1976 profile image
Kazzza1976 in reply to happytulip

Yes I have had them checked they are all fine

happytulip profile image
happytulip in reply to Kazzza1976

That's good to know.

in reply to Kazzza1976

The pin pricks I used to get all over my body its horrendous I now get them in hands and feet even face its to do with our nerves over fireing x

Kazzza1976 profile image
Kazzza1976 in reply to

I get them more so in my hands. And pain in my fingers and sometimes feel I’m losing my grip. Thanks for your reply x

moo196 profile image
moo196

the absolute best thing I have ever done wrt pain in my hands is to give up diet coke and everything else with artificial sweeteners in. Pain disappeared within 48 hours. Worth a try?

MaggieSylvie profile image
MaggieSylvie in reply to moo196

Oh! Perhaps that's why fibromyalgia is no longer my biggest source of pain.

Kazzza1976 profile image
Kazzza1976 in reply to MaggieSylvie

Thankyou I will try this

bigalan profile image
bigalan

Hi Karen,I am the same pin & needles in fingers & feet that come & go through out the day & night & always Exhausted more in this hot weather. I try & have a soak in a warm bath that usually helps. John.

Kazzza1976 profile image
Kazzza1976 in reply to bigalan

Thankyou for the reply John I will try that. Thankyou

Whiteclouds profile image
Whiteclouds

Hello kazzza1976, I sympathise with you I have pins and needles in my fingers and hands in my legs and my hips I have terrible pain in my back I can only describe it like toothache only worse. I suspect it’s nerve pain and I’m also waiting for a physio appointment I sometimes struggle to walk it’s so painful at one point I thought I was dying. I’m in my late 60’s but this has been coming on gradually for many years. I have been diagnosed with fibromyalgia, chronic pain and have rheumatism in my left hand. I hope that some day soon the research team find something to help us. My best wishes to you. X

Kazzza1976 profile image
Kazzza1976 in reply to Whiteclouds

Thankyou for your reply. The consultant thinks I have had this since 2017 after my accident. I had these symptoms in 2017 but because my bloods was normal no further investigations was completed. When I have read up about fibromyalgia it says this is not progressive , it feels like it is as my symptoms have gone a lot worse since 2017 , ie . Pins and needles a lot more frequently and the exhaustion and pain. I also hope the research team can do something to help. Best wishes to you x

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