Hi guys - I'm a middle aged man & recently developed severe Raynauds secondary to autoimmune disorder currently "pre-scleroderma" may but hopefully won't progress further.
Anyhow - my Ray's is well controlled on Nifedipine but i still have an extreme aversion to cold and get excruciating tingling / shooting pains when i touch something cold like a can of drink or something from the fridge with my bare hands.
Does anyone else get this? Is it normal (for Ray's)?
Ta in advance
Hiya amd21
Yes, that's completely normal and in fact I'd be shocked if you weren't averse to the cold.
Layers are generally the best way to avoid Raynauds attacks, it's important to layer the clothing so you can add or take away in increments so you avoid cold shock/overheating. Obvs though this is after medication, if that works for you.
In fact, I'd file it in the very lucky column that you're managing the RP with nifedipine, as it really doesn't help me much at all. I still take it in quite a high dose though as it does help a bit.
I also have a pair of leather mittens next to my fridge freezer, as touching anything cold is a sure road to a severe attack in my case. Hot water bottles and hand warmers are also in abundance lol.
You've found a great source of info in finding this forum. If you've anymore questions just ask as somebody will usually be able to guide you.
Charlie.
Hi Gindy thanks for the reassurance.
The weird thing is that thanks to the rx I can handle very cold things without the bi/triphasic colour change so i don't have a Ray's attack if you get me - it just really hurts when i touch something cold and again its this weird electric type pain as opposed to the numbness then erythemia on rewarming.
In fact since I've been on NIfedipine (16 months) I've only had one attack and that was last summer on holiday in France when i jumped in a pool and went from 45 degrees C air temp to 26 degrees C water temp (according to floating thermometer) and my hands and feet instantly went white and hurt a l little and when I got out they went red & burny!
I use my hankie generally to get things in / out of the fridge but i still sometimes forget / cant be bothered and then oy yoy yoy it hurts.
OH YAH....Do i know..gloves are in order after this diagnosis....Ive not started my nifidine yet..as i am going somewhere sunny..but since my reyneaud diagnosis..i have nerve damage in alot of my finger tips..I also had my middle finger ulcerate..Scarey..im not dibetic.....but i try to manage..i also have sclerdoma symptons..of the esopheagus...but one day at a time...Theres always worse off......good luck!!
Yes. I also have severe Raynaud's and systemic sclerosis scleroderma. I live in Missouri in US. In the winter you are layering clothes, still the pain in your feet is so bad. I was on nifedipine for years, but they changed it to aggrenox twice a day and gabipentin 3 times a day. Cold things are very painful. It gets bad enough you need a heater in the bathroom just so it is warm enough to shower. I loved. My high heels, and now it's hard to find shoes you can stand for just a couple of hours.
Hi join the club mine hands are permanently cold these days plus feet gets to stage i can't do anything with them was trying to sort a dinner out nearly ended up with fingers in the pan!
I don't heal either get a sore etc there for months and months when does go leave a scar/mark
Waiting for my Quack to re confirm it as keeps saying don't have this this or this yet over ten years ago other one said i have Raynauds! was on Nifed had to stop it though as dropped my bp through the floor as only 90/60 most of the time had world going round was like being at sea in a storm!.
Sorry to hear you can't tolerate the meds, for me its made a big difference, i know it'd be so much worse without - hope you find something that helps.
Hot wax bath for hands and feet so helped me.
I am exactly the same - I got my first Iloprost drip about 7 weeks ago and got immediate relief, but I think it is now starting to wear off! My fingers and feet have started feeling cold and changing colour again and starting to get leg cramps when out cycling. I'm not on medication as doc says Iloprost is all I need but is anyone else on medication after getting Iloprost?
Hi mc_clean_david
Yes I also have Iloprost once yearly at the moment, I find it works wonders, but I am also on Sildenafil 50g 3 times daily, this is for my Lung condition but also helps with the Raynauds, but I still get cold hands and sometimes feet but I suppose we just have to get used to the condition? Iv had it for so long I find it quite novel to sometimes be warm!!!!
Burning feet as well as cold?
Legs and left side of my body always cold
‘Feeling the Cold’ Survey
So cold!
