Raynaulds? With Numbness and tingling in hands and feet?

[SmilesBarnaby]

Hello folks

I’m a male who’s 47

I have suffered from back pain all my adult life then shoulder and neck and knee etc etc

Tried all options but nothing has helped.

I’ve suspected Fibro for a long time

Last 6 years I started to develop Raynaulds badly in hands and feet. I’ve been getting checked out by rheumatologist and it looks like primary since no autoimmune blood markers to speak of really

But even when it’s not cold my toes and finger tips are numb and fizzing and uncomfortable

Does anyone else with fibromyalgia have this ?

Wondering if it’s another benefit of fibromyalgia (😢) or something else !

Many thanks for your help

[Mum27]

I have fibro i also was told by the doctor that I had raynaulds,, but mine was the other way round I had Raynaulds before fibro,, so I don't think Raynaulds is connected to fibro

[LoneEra]

Hi. I have raynaud’s as well as fibro and rheumatoid arthritis. I know there have been a few studies into raynaud’s and fibro, like this one: ncbi.nlm.nih.gov/pmc/articl...

I’m not sure there’s a concrete answer for you, though.

One thing you said piqued my interest/concern...have you only had blood tests to rule out autoimmune disease?

I ask because I have seronegative rheumatoid arthritis and every single blood test I have is 100% normal. Even the inflammation markers are normal...despite swollen joints.

My RA was identified through MRIs, X-rays and ultrasounds of my joints. I wonder if you might need to ask for some scans, if you haven’t had them?

Best wishes x

[SmilesBarnaby in reply to LoneEra]

Thanks LoneEra. No I have not. I’ll speak to the rhemy about it and see what they think. Thanks for your reply

[Cat00]

As far as I am aware both Raynaulds and tingling in the hands and feet are both commonly associated with Fibro. I have Raynaulds and it's not just cold that sets it off also anything too tight that restricts movement, like tight trainer socks or shoes that are too small.

[SmilesBarnaby in reply to Cat00]

Thanks Cat00 I think the cold hands and feet and the numbness and fizzing are Raynaulds related and the idea this is part of fibro is in a weird way quite comforting! Vs something else etcThanks again

[Dizzytwo]

Hi there, I see you have asked this question in other HU forums. I am sorry your suffering but it does sound like your GP has sent you to see specialists and done Thyroid testing. I also see they have not come up with any answers apart from start you on some kind of medication for your thyroid.

I am sorry but no one on here is medically qualified to answer your question. But from a personal experience I will say I have suffered all my life with extreme cold hands and feet.

I have had fibro for 40 years but I have never thought it was fibro related. I have alway put it down to bad circulation and or peripheral neuropathy. Its got worse has I have got older and have just learnt to live with it.

At least you are getting tests done and I do hope you find some answers to help relieve your worry.

Momo.

[SmilesBarnaby in reply to Dizzytwo]

Hi Dizzy2

Yes I’ve had thyroid tests. My GP thought they were fine but a private doc thought my TSH was on uppermost of ok range whilst my T4 on the lowest. My body temp was also low sometimes down to 34c

He suggested natural desiccated thyroid which had odd effect.

My hands and feet seemed to get loads better for a while so I thought I had cracked it! Then a few weeks later more tingling than ever and still cold. So I gradually stopped the thyroid meds.

I’ve recently seen a neurologist and they don’t seem to be able to test much except nerve conduction further up the arms and legs which he said probably won’t prove much.

For now I think my working assumption is that it’s Raynaulds associated with my general body pain! In some ways Thais better than some new nasty autoimmune thing so I’ll keep it positive with that. If you know what I mean!

All the very best

[Patdoyle]

Hi yes I developed Raynauds a few years ago. Tips of my fingers and toes are sensitive and go freezing cold and tingly even when the weather isn’t too cold. My nose also goes the same.

[Hazel_Angelstar Administrator FMA UK Staff]

Raynauds is one of the common comorbid conditions that goes alongside fibromyalgia

[SmilesBarnaby in reply to Hazel_Angelstar]

That’s really interesting HazelA. Hanks very much for sharing this information All the best

[Puppylove05]

I suffer exactly the same symptoms and like you do not show markers in blood tests but I am always told it is caused and associated with my fibromyalgia

[SmilesBarnaby in reply to Puppylove05]

Thanks PuppyLove Interesting. Thanks for sharing the info.

My pain started in my 20s. This Raynaulds only showed up around 6 yrs ago.

Prior to that I was very warm person. Winter swimming and the like !

I wonder if others had the same in that the Raynaulds came later.

Thanks again

[Sambino78]

As long Era has suggested, blood tests alone can't rule out arthritic conditions. Your symptoms do not sound dissimilar to my own 're back, neck knee pain etc. I had MRI on back 3 times over last 15 years and no inflammation. Last month I privately funded a HLA B27 genetic marker blood test which was positive. This test and my symptom history was enough to get an inflammatory arthritis, (Psriatic arthritis) diagnosis with fibromyalgia. Would never have gotten this diagnosis if just left to inflammation blood markers. Also I suffer from terribly cold feet and hands which is getting worse. I feel it is likely to do with poor blood circulation as I have also suffered with erectile dysfunction for 15 years. Now I have my chronic pain diagnosis sorted, this is my next quest to get to the bottom of these problems both of which are signifiers for possible heart issues down the road so shouldn't be ignored.

[SmilesBarnaby in reply to Sambino78]

Hello Sambino. Sorry to hear of your symptoms. Thanks for the info re the hla b27. Something to bear in mind All the best

[Midori]

Hi there,

I've had cold hands and feet since I was a child, chilblains in autumn through spring. I was diagnosed with Fibro in my late 50s, since then I've accepted the feet and hands issue without bothering too much about it.

Unfortunately when you go to a GP in UK, you can only ask about one problem per visit. I have a lot of things wrong so it's likely to take a year before I get around to asking about Raynauds.

Cheers, Midori

[klr31]

Check your B vitamins.

[SmilesBarnaby in reply to klr31]

Thanks klr31. I have and they are all good thanks. Shame in some ways as that would have been a nice easy fix

Good to rule it out though

Thanks again

[Dylan62x]

Yes your not on your own I constantly have the same thing but had it for years on the positive side its not got any worse infact at times I bailey notice it so I don't think it's really anything to be concerned about but if you are try to see your gp and see what they say .

[SmilesBarnaby in reply to Dylan62x]

Thanks DylanIt’s positive to hear that this is quite likely another (annoying) feature of fibro

That is better than some of the other alternatives IMO so thank you for sharing your thought and experience

All the best