Heat intolerance in Raynaud's?

[Kessa]

Hello😊

I have Raynaud's and I was wondering if anyone can help me with these symptoms. I get the usual Raynaud's symptoms when I go out in winter or touch a very cold drink ( hands become numb and white and red and painful) but is it common to have also exteme intolerance to warm temperature?

By that i mean that I cannot cover myself with a blanket because I feel my hands getting red and warm ( sometimes painful or itchy) like if they were in the third phase of Raynaud's. I had a few winters where I had to sleep with opened windows to feel fresh air on one side of my body or put my hands in the fridge for a while. Of course my family called me crazy and complained about the cold. In spring and summer gets better than in winter but still having some problems covering myself or staying indoor with clothes ( eg. In a pub or restaurant with a normal clothes) without sweating and my hands turning tingling and uncomfortable..

I was diagnosed with Raynaud's but my doctor (who 's a bit dismissive) didn't investigate much so I don't know if it's primary or secondary R.

Any tips to get rid of these symptoms and do you think i should further investigate about Raynaud's symptoms ?

I also have some dry throat and the sensation of food getting stuck in my throat sometimes but since i have anxiety I didn't worry much about it.

Thank you to everyone.

[zenabb]

I can't stand the heat to the point of having to sit by the open deep freeze. We have difficult blood circulation. I have some of the same symptoms as yourself. It seems to me that you need to be referred to a rheumatologist.

[boome]

Dear Kessa

i too have problems with heat tolerance. I think you must investigate and find out if your Raynaud is primary or secondary. Unfortunately, it could be accompanied by another autoimmune disease. Find a good rheumatologist who will be willing to look into your case.

best wishes

boome

[Sami13]

Hi Kessa

I have systemic sclerosis and some overlap conditions. I have really awful raynaulds and I experience the same as you. The red and hot is just as bad as the cold. I am under the royal free hospital in London and have had the thermal imaging tests done and I've just been diagnosed with erythromelalgia which can go along with raynaulds. It really sounds like what you have. The dry threat could be systemic sclerosis or sjorgens. I would ask to have your ana checked it's a simple blood tests which would show if you have any autoimmune responses going on

Sam

[Hidden]

Hi - I agree with all the above comments. I have Sjögren's with secondary Raynauds and small fibre neuropathy. I find that I swing from one extreme to the other a lot. During the night I get such burning pain in my extremities that I'm constantly sticking my legs out to cool them. But then once I get cold hands or feet or core I feel terrible. Sometimes I crave chillers/ freezers and mostly I'm terrified of them.

Ask your doctor to refer you to a Rheumatologist for clarification - please be firm about this!

[lindyanne]

Hi there yep I agree with the above comments too, definitely get seen by a rheumatologist, GPs don't have the specialist knowledge with rare diseases and always good to see the experts , what ever the outcome, it's reassuring to know what you're dealing with

[bengali]

Have your doc look into erythromelalgia. I have both the Reynaud's and the EM. Ends up like a loose loose situation, can't stand the cold, but can't stand the heat...

[Marie95]

Hi Kessa

Sorry to hear your suffering with hot and cold intolerance, I know how awful this is and doesn't fit well into normal life. I have primary raynauds and also have blood/bone marrow disorder ET, at first Dr"s thought it was lupus, anyhow, life was awful in winter core body temperature absolutely overheating couldnt sit in any room with heating on, feet and hands cold as ice, then when everything heated up, pain tingling, fingers would expand and go red this went on for years until I finally went to see a homepath ( which Ichecked with my Hem and DR would be ok) now i am not saying life is not without some problems but it changed my condition so much for the better, Its a long process and not cheap but I can now do normal things so life changing . best of luck

Marie

[Delissedoesclay in reply to Marie95]

Can you share what your taking ??

[pallinurse]

Yes! It is so weird. Like the temperature control is just screwy. If I get chilled, I get the RP, but then when I get under blankets to warm up, I totally overheat and get hot and sweaty. My magic solution is an incredible little down throw blanket. It is very lightweight, and somehow regulates my heat to "just right". I travel with this thing! It scrunches up in my suitcase and takes a beating. My old one is getting pretty worn, and I couldn't find it any more I got it at an overstock store and it was Northern Nights from QVC. Thankfully last night I finally found one that seems similar on Amazon by Eddie Bauer so I ordered it. Hopefully will work the same. Heavier down blankets overheat me--the only thing that works is this little "blankie".

The food getting stuck is most likely from the esophageal dysphagia. I have to keep fluids with me if I am eating. Dry chicken is the worst! I notice I am choosing more soups and softer food instead of chunks.

If your physician is dismissive, please consider finding one who is willing to learn more about your condition. I am in the USA, and oddly, my rheumatologist was not at all helpful in terms of my concerns, but my internal medicine physician is on top of everything and takes it all seriously and aggressively. I think the level of caring matters more than the initial level of knowledge. If they care, they will learn about it! Best wishes!!

[Littleleni in reply to pallinurse]

Are you possibly in Southern California? It is hard to find a dr that will listen.

[pallinurse in reply to Littleleni]

Hi! Boise, Idaho, but I am in the middle of moving to Hot Springs, Arkansas so need to find a new doc!

And the new Eddie Bauer down throw (blankie ha ha) is working great. Good Amazon purchase.

I recommend looking for a really good internal med doc or nurse practitioner. You need someone who will look at the big picture. The pulmonologist was only there for my lungs, the gastroenterologist only looks gut tract, and the rheumatologist--so not helpful! She was very focused on my hand joints, as if I had rheumatoid arthritis; carefully examining each one for pain or swelling. I had no hand issues aside from the RP. My biggest issues were dyspnea and the esophageal and gut stuff--and I would have to bring those up because she never asked! Find a good primary care person and they will look at big picture. Hugs!

[Delissedoesclay in reply to pallinurse]

Wow thank you

[Delissedoesclay in reply to pallinurse]

Chicken is the worst I always have to have water when I eat

[Goldyukr]

Yes, I also deal with extreme heat intolerance - and I live in Florida. Not the best place for me but those are my circumstances. I have overlap autoimmune and the most recent thought on this (for me) is I have vessel wall instability which mimics both Raynaud's and Erythromelalgia. Here I deal more with the latter due to the heat. I also can't handle the bed sheets on my feet quite often, but mine is painful and I think that's from small fiber neuropathy. If you do have both of those conditions like I do, my doctor says there's nothing at this point she can do to help me. The problem is there is medicine only for one or the other and they will aggravate the other condition if you take it. But she's not the only specialist out there which makes it so nice to have places like this where we can share our experiences. Hope you can find some answers.

[Kessa]

I couldn't have imagined so many replies. You guys are amazing. Thank you really much for your support. I will definitely ask my gp to be referred..when I read about some of the conditions online I got a bit scared, they seem pretty tough. But it's better to know I guess and dealing with it. Now I moved so I have another Gp, who I haven't met yet. So hopefully she's more empathic. Yes, the other one thought that all my symptoms were caused by anxiety and she told me since I m young ( 30yrs) and I have low pressure, Raynaud was common to have. I' m very grateful for all your help, cause even tough I m not having severe symptoms, they are putting a strain on my relationships since no one understands why I complain so much about the temperature. Basically I don't have such evident symptoms but I feel i cannot stand any kind of temperature so it's difficult to explain to others.

I will keep replying sorry i m replying very slowly, i m almost always at work replying on breaks😊

xx