I have been diagnosed with Raynauds, which might now explain the extreme pain in my feet (not to mention the fact that my toes turn black…). I was told is nothing to do with MS - though frankly it seems too much of a coincidence.
Have started medication and have started with tummy upsets, feeling faint and sick. Hoping this will all pass. Interested in anyone elses experiences of Raynauds or the treatment - do the side effects pass? Thanks. S
hi
yes-hands and feet go blue. took nifedipine (?sp) during winter months-made me bright red in face cos dilates everything! invested in ski socks!
its a common prob.
ellie x
Me too - although not as bad as previous posts - just fingers go white to knuckle and very difficult to use hands. GP thinks it’s odd as I only started to get it in spring time this year (dread to think what it’ll be like in winter). MS nurse says not connected but lots of people with MS have it…huh??? Surely there’s a connection. Don’t take anything for it. Shake me and I rattle already.
Just another one of those weirdnesses…
Kx
-me too although Ive just found out it may be connected to yet another genetic problem I may have. Being tested on the 30th August this year.
I drop things all the time (ms and raynards associated), trip often and cannot get warm nor use my extremeties especially when the temperature drops below 20oc. My son bought me some heated gloves and innersoles for the winter months which do help.
take care,
brenx
My daughter has this - no MS - and was told by the doctor that the hands and feet go cold because the body core temperatre goes down and because of that it takes all the warmth out of the extremeties [hands and feet] to try and keep itself warm. He said therefore, that gloves and thick socks aren’t that effective but the trick is to keep the body core warm with layers of clothing…
We hope that professionals - like the MS nurses/GP’s would know better - Raynaurds IS one of the MS symptoms -[ so is shingles - in another post.] And it has nothing to do with cold weather. l can be unbearably hot - flushed red cheeks- perspiring- but my hands and feet will be frozen. Even in a heat wave l have to wear gloves when out on my scooter. Strappy top and shorts with ‘mittens’ is not a good look!!! l am on the move all day - and l exercise to improve blood circulation. And l do take a low dose aspirin to keep blood flowing better. At least l can put my frozen hands on to my red hot face - to warm hands up and cool cheeks down.
F.
Hi SGT,
Yes, I have MS and Raynauds - fingers and toes go blue and very sore - develop chilblains on hands and feet. Read on Patient.co.uk that it’s Secondary Raynauds and can be an auto immune thing which MS is. I wear very thick socks and knee length woolly slippers and
fingerless gloves. Last winter it got so bad i was put on Nifedipine 5mg 3x per day. As Ellie said - makes you warm
and rosie cheeked. Call them my hot tablets.
Wine also dilates the blood vessels but not a good idea to drink 3x per day!
Keep warm Jenny x
Pat,
l do think that all MS -so-called professionals should read this forum - lt should be compulsory reading!!
F.
Thanks, all - I was sure I was not alone and never doubted the link with MS - as I said too much of a coincidence!
Not enjoying feeling sick and having a bright red face lots of the time - do these effects get any less? Had suggested not treating it with drugs but loss of toes was given as a risk and I am quite attached to my toes…
If we look up Raynauds it suggests ms as a disease where it is common! So dont know why someone was told it wasnt connected, because there is recorded literature on t’net.
bren
x
Yes, have both.
Hello there,
I have MS and Raynauds. I was diagnosed this year with MS but my problem with Raynauds has been life long (earliest recollection of my white fingers at the age of 8) I have tried on two separate occasions to take the medication for it but both times reacted badly. The tablets only seemed to have a temporary effect with each dose and this did not last for the whole day. They also made me feel spaced out and weird and I decided it wasn’t worth it. I think I might be right in saying the tablets for this are also used as blood pressure lowering tablets. This could be why I didn’t get on with them as I tend to have naturally quite low blood pressure. I guess you could wait to see if the side effects will go away. I just didn’t have enough patience. I never look forward to the winter months and in all these years have not really found a practical solution other than wearing loose fitting gloves or mittens (mittens generally better). Tight fitting gloves just make the problem worse. I also find I have to wear lots of layers to warm up my entire body,( not always the best look esp if you want to don your little black dress at the xmas party) but I just hate being cold!!
I’m hoping that someone may be able to clear up some ‘confusion’…
I was diagnosed with Raynaud’s several months ago - treated with Nifedipine. I have a number of other ongoing ‘unexplained’ neurological type symptoms despite clear MRI over a year ago.
My GP states that my Raynaud’s is primary and absolutely not secondary to MS (for instance) as blood tests rule this out.
Forgive my ignorance, but I thought that their is no blood test available that can either confirm or rule out MS. Am I being hoodwinked here? I am obviously loathe to question this direct…
Raynauds is a more common symptom of LUPUS which can cause neuro problems too. Mimics MS. A blood test can be done for this.
Moyna
-I too suffer from Raynards, and have learnt to wrap up well, put on extra socks, try heating your shoes before you put them on, keeps them warmer, also always use plenty of cream on hands and wear gloves even if its fairly mild.
Ive found once cold I take 6 hours to warm through. Water bottles are great for the feet, and if using scooter please use blanket over legs because once theyre cold you will stay blue until thaw - hence 6 hours.
Not nice but quite common to have ms and raynards too.
bren
x
Oh the joys eh I too have raynauds and it affects both my hands & feet. Only have to go to the fridge aisles in supermarkets & that’s me white hands white feet regardless of socks/gloves. Usually have to sit with heater on in car for 20 mins before I can set off. Sue