Has anyone else got or had this. I have RA sero negative also fibromyalgia and various others. At the moment I can't touch my skin on my wrist/arm also side of face. My actual hands are on fire. So hot I have been sitting with them in fridge to try and cool down. Has anyone else had this.
Feels like I have been scalded : Has anyone else got or... - NRAS
Feels like I have been scalded
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digger1
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38 Replies
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Not me, that sounds very strange, almost like an allergic reaction. I hope you get some relief soon.
I get it when I'm in a bad flare . Try holding frozen peas wrapped in a tea towel. Or a hot water bottle filled with cold water . Take care
Yes I have the same thing. My Neurologist said that it could be due to the Fibromyalgia ,HIGH SENSITIVITY.
I get it under my armpits, right the way down my inner arms. Drives me mad.
I have to wear short sleeve cotton tops
even in the winter, because long sleeves make me tingle and burn..My hands go RED HOT, like ive had them in boiling water. Its a real misery..
I have Raynards Syndrome, that's why my hands are so hot. I had the Raynards Syndrome a long time before the Fibromyalgia. I use Wheat Bags, you can put them in the Freezer or in the microwave,depending on what area of the body you want to use them on.
Every night I take one out of the Freezer and takes it to bed with me for my hands.
Oh BLISS, they really do help to ease the pain in your hands.
Hope this helps you.
🤞 Fingers Crossed
Thankyou I will try anything.
Yes please try it because it really will help the burning pains in your hands .
Ohhhhhhh, they are so cooling, and when I go to bed i put my one hand underneath it and my other hand on top. Then i can actually get a few hours sleep without crying with the pain.
Let me know how you get on with them when you start using them.
Good Luck .😊.
in reply to Gjkas
Menthol works well for some - also biofreeze or cheaper deep freeze otc.
in reply to Gjkas
Please see sruk.co.uk/scleroderma/eryt...
It’s not the same as Fibromyalgia and small fibre neuropathy can be evidenced clinically by skin biopsy,
Gjkas in reply to
Ooh Twitchytoes.how do i go about getting a skin biopsy done. My Doctors are absolutely rubbish, i have been in so much pain lately and I might just as well talk to the wall as talk to them.
I could do without all this itching and burning pains. Ive even had it all over my face and neck today
Thankyou so much for you help and advice. 👍.Gjkas
in reply to Gjkas
Not a good day for me to have commented Gjkas as just bailed out of neurology after 5 awful years under this specialism.
By chance just had a lip skin biopsy for skin cancer this morning so a bit out of it and neuropathy throughout my body but extra bad these days in lips and fingers.
Suggest you just follow the best links I have given you here and in comments above and read up! Best of luck.
sruk.co.uk/scleroderma/eryt...
Gjkas in reply to
Oh thankyou so much.
I'm so sorry you're having to go through all that
I will follow the links youve given me.
But you take Care of yourself and I'll keep my fingers crossed for you 🤞.
When you feel well enough, let me know how things are going for you.
GOOD LUCK 😚.Gjkas x
in reply to Gjkas
🤗 thanks so much will do.
Not quite that badly., but I do get patches of hot and tender skin, painful to the touch but no visual sign of anything untoward. These usually occur on my arms or legs and only last 12-24 hours, occasionally longer. There is no rhyme or reason to it, and the Rheumy has no clue why....
I had this for a while until it was under control. It felt like my hand and wrist were permanently on the oven Hob. I wore compression gloves which helped somewhat. I feel for you. It’s horrid.
Cwendyn,how did you get it under control. Mine is just getting worse
More intense and coming to more area's including my face and neck.
Thanks for your advice. 😰.Gjkas
Purely getting the right meds in the end. Biologics changed everything within a month of starting them
What do you mean Biologics .
Did you stop taking the medication that the Doctors gave you???. Ive been on the same medication for about 7 years now. They are bloody rubbish. But Doctors don't seem to know what to do with me.
Could you please tell me which Biologics you started off on .
That's if you have time
Thankyou so much 😰.Gjkas
These are the meds the doc gave me. I’m on benepali
Hello
Painful, painful, painful, poor you. Interestingly when I was first experiencing RA pre treatment I describe to my friends "it was as if my joints were on fire".
So this burning heat seems part of it at its worse.
Not experienced the not being able to touch my skin though.
Hope you get soothing relief asap.
Welcome to my sero negative world! I also have fibromyalgia..... aren't we lucky 🍀 I'm presuming you have just started on medication..... your symptoms I'm sorry to say are "normal ". It takes time to get onto the best meds for you. Best advice I can give you is work with your doctor on getting pain under control.... good luck 😉
I’ve had something similar. When I have put my hand under lukewarm water it felt like I was being scalded has happened on several occasions.
Joguy126 in reply to
Hi. Yes i have this. It feels like im walking on hot sand too
in reply to Joguy126
My feet feel like they are burning especially at night. Saw Gp just shrugged his shoulders will mention it at my next appointment
Gjkas in reply to
Our GPS need to have it for a couple of months. Make them wake up to how much we go through.
Perhaps then they may take more notice and go out of their way a little bit to help us..
in reply to Gjkas
I agree. Many years ago I worked with an audiologist you use to make his trainees partially deaf or very heard of hearing then send them out on the street and buy things from a shop and cross busy roads. I tell you it made you understand what these people went through. Shame we can’t do. Something similar with GPS.
in reply to
If your lip biopsy shows Sjögren’s then you may be like me and have small fibre neuropathy - see my other reply with related links for more.
in reply to
Just looked it up..... 🤦♀️🤦♀️🤦♀️ just something else to mention to rheummy gonna be a long appointment in December
in reply to
Sometimes I regret ever learning about any of these named conditions because I used to assume just part of RA. But then it was so bad and I relocated and then rediagnosed by lip biopsy. Loads more treatment options and understanding for RA so be wise about what you mention if your rheumy is happy to treat you regardless.
in reply to
Thanks I blame RA for everything. I don’t get any redness is that significant?
in reply to
Well I only started getting reddening badly this year. It is the hallmark of EM but a proportion of those with SFN have EM/ Raynaud’s combo.
As I said can’t touch type as v bad neuropathy in finger tips now so will have to leave you all to do your own research using links I’ve given you.
It’s been a long journey of research for me so far. RA was much easier Disease to have. Everyone knew what it was and it didn’t involve lip biopsies or such awful invisible pain of having to try to educate general rheumies and neurologists who mostly know zilch about Sjögren’s apart from sicca. My advice was hold onto the RA label even if you actually suspect you have primary Sjögren’s. It was a better disease label to have to blame for me - and they are actually pretty much entwined. So maybe my first rheumy was right to ignore Sjögren’s and stick to RA although Sjögren’s is the right diagnosis I know know. I have drifted hand, hand pain and nail pitting but no one cares cos “just” Sjögren’s no treatments, no real support networks - zilch 🤷🏼♀️🙄
Hi, yesI have had burning feet, also wrist. Haven’t got it anymore but have had it.
I don’t know if you have Sjögren’s or Lupus - first misdiagnosed as seronegative RA in my case.
But if so there is a burning connective tissue disease condition called Small Fibre Neuropathy (SFN) that can attend Sjögren’s and Lupus or be caused by other conditions. It can often make the hands any other parts burn. It can start long before the classic Sjögren’s sicca symptoms begin.
Also, if your hands or feet are going red with the burning pain then there’s a rare condition that is associated with autoimmune diseases, including RA, called Erythromelagia (EM). I have both plus Raynaud’s overlapping my Sjögren’s.
Here are two good links to both:
Bummer... but thanks for your help
I am RA negative, I had a similar condition last year, when my hands were swollen, and used to sit on the settee,doing nothing. I used to use a ice pack,on both my hands, and did make a difference, I also tried to put them in Radox, made some diffence,but I still preferred the ice pack.
When I spoke to one of the Dr's at the hospital, I was given a steroid injection in my bum, Thank god I haven't been through the situation again. Try this or call your Rhumotologist, and tell them what you are going through, some body will definitely help you. All the best.
My husband is always very supportive all the time. Glad to have such a wonderful partner.
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