Raynauds question

[Katybarstool]

Hi

Does anyone else find that a change of position can affect the temperature of their feet? The reason I ask this is because my feet are generally okay when I'm walking, but if I sit down (either with my feet on the floor or on a footstool) for any length of time, my feet feel as if they are frozen.

Another question, does time of day affect the coldness of your feet? For me, if they are going to be cold, it's during the day, but by evening they can burn. I also have peripheral neuropathy, so that could account for some of the burning, I suppose?

I take amlodipine in the morning for the Raynauds, but it's meant to last for 24 hours. So, I'm unsure whether it's the timing of the drug that affects the temp of my feet, or just some kind of circadian rhythm.

Any words of wisdom would be greatly appreciated.

Kathyx

[lesmom]

Hi, Kathyx
I have Raynauds as well. I take nifedipin for mine at noon. I fight it in my hands and feet. I don't really have a specific time when they are cold or warm. I do find if I have them propped up- they will get cold and tingly quicker than just having them on the floor. If I get hit from a blast of AC my feet and hands get cold instantly. My right hand is better than it was, but I had a horrible problem with my ring finger and my pinky being numb all of the time. I haven't been to the rheumy yet to know which pain/ symptom is due to the SJS and which is from the Raynauds. My opthamologist dx my SJS and the neurologist dx my Raynauds. It's still a work in progress I guess you could say. I have been keeping a pair of light cotton gloves in my pocket and I wear  2 pairs on socks- not that really helps. I just try to keep moving to keep the blood flowing.

Good luck and hang in there!
Hugs,
Leslie

[Katybarstool]

Thanks Les

My SJS was diagnosed by a rheumatologist almost 2 years ago - I've not seen one since. The GP diagnosed the Raynauds on a history and examination last winter. A previous GP had just dismissed it as 'being cold 'cos it's winter'. Twelve months on the GP was shocked to see my legs and feet.

My son takes Nifedipine three times each day for Raynauds/Acrocyanosis. He says it works very quickly, and he can certainly tell if he misses a dose. To be honest, I'm not sure that the amlodipine is helping the cold, but it certainly helps my high blood pressure, so I'm sticking with it for now.

Thanks for getting back to me.
Kathyx

[Dolly Dimples]

  Hi Kathy, I don't know anything about Raynauds except to say I did think I had it until I went to my GP who said it was just sensitivity to the cold that I was experiencing, (even in Summer)  Huh!

   He did give me Tablets to try and up my circulation, but they were useless.   I complained again to my new GP six months ago, she just changed my review  times from 6 months to 1 year!  so I guess she diden't have a clue...
   My coldness affects me more now than ever before,  I'm in a state hyperthermia much of the time unless we get some lovely warm sunshine..
Sun goes in.... so do I!   It's a weird thing this complaint..      Warm hug   Dollyx

[lighthouse33]

I did read on the Internet that recliners make neuropathy worse.  It didn't state any reason.  I have a recliner with a footstool.  I try to move my legs and feet around periodically.  I think sitting in one position for too long also contributes to stiffness. 

[Patze]

Hi Kathy,

The rheumy diagnosed the SICCA and the Raynaud's, but I'm not taking anything for the Raynaud's as he's doing the wait and see what other suprises that this ol' body has. 

If I sit down for any length, my feet always get cold and turn blue, the hands can also turn blue (especially if I'm working on the computer and the time of day doesn't seem to matter either).  Now if I get warm, my hands and feet will turn bright red, it's amazing thing to watch.  What's starting to worry me is that my lips are now starting to turn blue when I'm cold too.  Whew, this is getting ugly.

I'm with lighthouse, I get stiff when I stay still for too long, and the colder I am, the worse it is.  Anyone else have this problem?

Take care -

Patze

[Katybarstool]

Patze

That sounds very similar to my Raynauds! Could you ask for it to be re-assessed? I'm with you o the blue lips as well, although I thought that may be due to my lung problems.

These things really make us glamarous, don't they

Kathyx

[Katybarstool]

Dolly

Do you see a rheumatologist? If so, I think they would be able to give you an opinion. Certainly that's what happened to my son. His diagnosis at the time was fibromyalgia and acrocyanosis (which is like Raynauds, but without the colour changes)

It's not fair when you are suffering so much and no-one takes any notice.  Let's hope for a comfortably warm summer - it's lovely here in Yorkshire today 18 degrees

Kathyx

[Katybarstool]

Lighthouse

Thank you. I'll bear that in mind. Trouble is, I'm just short of five feet tall, so when relaxing, either have to have my legs dangling, or sit with them up

Kathyx

[Babs659]

The PN causes my feet to burn like heck---especially at night while I'm off them.  My raynaud's is only a problem in winter.  I get it in a few fingers and toes.  The rheumy told me to take Vit E, and it did seem to help a bit.

As far as blue lips, I'm not sure but peripheral neuropathy refers to the nerves on the peripheral appendiges of the body, like hands and feet.  Erectile dysfunction also can be a form of PN.