Raynauld's syndrome + pain from cold sensitivity

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Raynauld's syndrome + pain from cold sensitivity

Postby sunnyem23 » Thu May 08, 2014 11:50 am

Hi,

Does anyone else have Raynauld's syndrome and/or extreme sensitivity to the cold or changing temperatures?

I find the pain to my feet and hands caused by feeling cold to be one of the most problematic of all my symptoms (alongside the crippling tiredness).

My circulation goes to a standstill after inactivity for a short period of time and triggers include: windows being opened in a room that's not that warm, air-con units (the worst culprit) and generally sitting still for too long. I lost quite a lot of weight two years ago which would not have helped but even at a 'normal' BMI weight it's still extremely painful. It bugs me that the doctors just put it down to 'being slim' - but I doubt others without FM/Raynauld's would cancel social activities that involve being in a cold environment or sit on their feet/hands during outings because the pain gets too much. :(

Thankfully I have discovered the wonders of Nifedipine (20mg) which the Rheumatologist prescribed over a year ago. It has help so much and recommend people asking for it if coldness is a real problem.

I'm curious to see if anyone else suffers from the pain induced by the cold.
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Re: Raynauld's syndrome + pain from cold sensitivity

Postby SchroedingersCat » Thu May 08, 2014 11:52 am

Yes. And 'being slim' is a problem? What?
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Re: Raynauld's syndrome + pain from cold sensitivity

Postby *Lisa* » Thu May 08, 2014 1:32 pm

Yep i hate the cold and react like you say.

I also have another problem on top now :roll: when i warm up (eventually) from being so cold i get a skin rash (hives) all over my arms & legs and face burns up like a lobster :shock:

I can tell a drop in tempreture within minutes. My skin turns blue , orange and blotchy, freezing cold and numb but painfull.

Im not on anything for it but i end up having to have a hot bath or i never warm back up!
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Raynauld's syndrome + pain from cold sensitivity

Postby whoami » Thu May 08, 2014 6:30 pm

I have had raynauds for going 30 years. The burning pain can be unbearable at times. This winter has been a long one here. Quite a few -20 to windchill -40 days. I could barely get to the car without being in pain from the cold.

This past 2 years I have been getting worse pain inside my nose. Like I said, before I get to the car the inside of my nose is burning and stinging. Don't laugh but I swear my eyes have frozen, the tears.They got all glassed over then pain, awful

I even carry gloves in my bag in the summer. Every building here is airconditioned in the summer. Just doing groceries can be freezing. Just can't win in this country.... :shock: LOL
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Re: Raynauld's syndrome + pain from cold sensitivity

Postby carolad » Thu May 08, 2014 8:44 pm

sunnyem23 wrote:Hi,


Thankfully I have discovered the wonders of Nifedipine (20mg) which the Rheumatologist prescribed over a year ago. It has help so much and recommend people asking for it if coldness is a real problem.



I have Raynaud's too and it has got progressively worse over the years. My hands and feet go numb even when it isn't particularly cold - a change in temperature is enough to set it off. So on a warm summer's day (happens about twice a year :P), my hands will go numb in the evening when the sun goes in and the temperature drops. It also seems to happen most mornings when I go outside (regardless of the temperature).

I was also prescribed Nifedipine but when I looked at the list of possible side-effects, I decided not to try it! I know not everyone is affected by side effects but I decided I'd rather not risk it. Do you have any side effects from taking it?
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Re: Raynauld's syndrome + pain from cold sensitivity

Postby sunnyem23 » Thu May 22, 2014 11:55 am

Hi everyone.

Thank you so much for your replies. It is really reassuring to read that others suffer from the cold too. My finger nails are going blue as I type. When I last visited my GP, he asked if I still needed to be taking the Nifedipine "even when it's summer". After he felt the temperature of my ice-cold fingers, he understood that it's not as simple as the changing seasons!

I find the worst triggers are air-conditioned rooms, sitting still for too long, shady rooms, sudden drops in temp.

I LOVE the sunshine. It makes my hands and feet so happy!! Funny thing is, I seem to react to the heat too and also get heat rash like you, Lisa.

Things I find that help, include: Herbal teas that contain liquorice, baths, sitting on my hands and feet (yes, I have even had to do this in public because of the pain…), tightly fitted clothing for layering (e.g. long tops and long socks), fleecy pjs.

Carolad - I haven't had any side-effects from Nifedipine. I've been on 20mg for over one year now (I take 5mg capsules throughout the day). Sometimes my veins become quite prominent, especially if I've done exercise or had a hot bath just after taking a capsule. It sometimes lowers my blood pressure too, so be careful with dizziness. The side effects haven't been bad for me at all - definitely helped carry on with my day..
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