Raynaud's Disease
Discussion
Have been suffering with this horrible thing for about 5 years now.Tried Ginkgo Biloba,which didn't seem to do much.I took Nifedipine(Valni) for a month last year but gave me horrible side effects which include palpitations,swollen feet and ankles so stopped taking it,but over this last year the condition has got noticably worse,it has now started to affect my feet as well as my hands,especially now it's winter,i'm going to go back to the doctors next week to try something else.Does anyone else suffer with this condition and what meds/herbal remedies do you take and what side effects do you get?
Marcia said:
Have been suffering with this horrible thing for about 5 years now.Tried Ginkgo Biloba,which didn't seem to do much.I took Nifedipine(Valni) for a month last year but gave me horrible side effects which include palpitations,swollen feet and ankles so stopped taking it,but over this last year the condition has got noticably worse,it has now started to affect my feet as well as my hands,especially now it's winter,i'm going to go back to the doctors next week to try something else.Does anyone else suffer with this condition and what meds/herbal remedies do you take and what side effects do you get?
Hi Marcia, my wife has been affected buy raynaud's all her life. So far no cure, however you may help yourself a lot by always dressing warmly arms and legs as well as hands and feet.
Have different gloves for all situations, think about what you are going to do next and dress
for Raynaud's at all times.
Mark.
The trouble is i work in a refrigerated environment,that's how i developed it,apart from getting another job,which is very difficult at the moment,i always wear gloves in whatever i am doing,i wear 2 pairs at work,but it doesn't keep an attack at bay,it has been unbearable just lately 
ked. The tip of my nose is 'fizzing' and sore and I look like a drunk, and 3 fingers on my right hand are swollen like barrels with the skin taught sore and itchy as fook and my left hand is purple, yellow and white and will no doubt be like the right hand within a week. But to describe it as unbearable is ridiculous. Just ignore it, if you dwell on it you'll just notice it more.
I disagree Mr GrimNasty, sorry! I've had to pull over while driving and have sat in the car, either sitting on my hands or with hands pressed against the blower, in floods of tears with the pain of this. One year when it seemed to be worse, it affected any bits that 'stuck out' - nose, nipples (yes, even fully clothed) and bizarrely the tip of my tongue. Definitely not possible to ignore.
I haven't tried any remedies (didn't know there was anything recommended for it) - just do double gloves and lots of layers.
I haven't tried any remedies (didn't know there was anything recommended for it) - just do double gloves and lots of layers.
c8bof said:
I disagree Mr GrimNasty, sorry! I've had to pull over while driving and have sat in the car, either sitting on my hands or with hands pressed against the blower, in floods of tears with the pain of this. One year when it seemed to be worse, it affected any bits that 'stuck out' - nose, nipples (yes, even fully clothed) and bizarrely the tip of my tongue. Definitely not possible to ignore.
I haven't tried any remedies (didn't know there was anything recommended for it) - just do double gloves and lots of layers.
Thanks,someone else that understands,i too have had to drive the 25 min drive home from work with no feeling in my hands,it's like when you foot goes to sleep and it feels huge and you get pins and needles,that's how my fingers feel when i get an attack!!!There are pills you can take for it,tried one,but couldn't bare the side effects,so going to try some different ones now,i'll do anything to make this condition go away!!! If i could find another job i would be out of there tomorrow if i could.I haven't tried any remedies (didn't know there was anything recommended for it) - just do double gloves and lots of layers.
Hi Marcia
No personal experience of this but, in general, all the protective measures suggested (especially the handwarmers inside your gloves) will help. Drug therapy with calcium channel blockers (nifedipine) is first line and if you did not get a sustained release preparation it would be worth trying one (Adalat LA or Coracten SR are commonly used). The side effects (ankle swelling etc) can still occur and if the medicine helps but the side effects are the problem then Amlodipine can be tried. Losartan (another type of blood pressure medicine) can help and is fairly well tolerated and there is a little bit of evidence for some anti-depressant medications (SSRI's like Sertraline). If none of these help then it is on to "trickier" therapy, there is good evidence for a medicine called Bosentan which is mainly used when the blood vessels in the lung go into spasm and also for the phosphodiesterase inhibitors (sildenafil) but there are some fairly tight restrictions on getting these in Scotland (& I suspect similar problems elsewhere in the UK).
I do not know if there is much evidence about supplements / herbal therapies - sorry!
David
No personal experience of this but, in general, all the protective measures suggested (especially the handwarmers inside your gloves) will help. Drug therapy with calcium channel blockers (nifedipine) is first line and if you did not get a sustained release preparation it would be worth trying one (Adalat LA or Coracten SR are commonly used). The side effects (ankle swelling etc) can still occur and if the medicine helps but the side effects are the problem then Amlodipine can be tried. Losartan (another type of blood pressure medicine) can help and is fairly well tolerated and there is a little bit of evidence for some anti-depressant medications (SSRI's like Sertraline). If none of these help then it is on to "trickier" therapy, there is good evidence for a medicine called Bosentan which is mainly used when the blood vessels in the lung go into spasm and also for the phosphodiesterase inhibitors (sildenafil) but there are some fairly tight restrictions on getting these in Scotland (& I suspect similar problems elsewhere in the UK).
I do not know if there is much evidence about supplements / herbal therapies - sorry!
David
Marcia, I too have Raynauds and Neurological problems mostly in my legs below the knee and my feet/toes. I use socks which are mentioned on the Raynauds Association website :
www.raynauds.org
The socks have Silver fibres in a special weave that actually work at keeping all my calves/feet/toes warmer than usual. The silver also has anti-bacterial properties which can help if the symptoms cause any infections .
I have used them for over a year now and they can be worn under nomal socks as they are thin enough so as not to affect tightness of your shoes,which in itself causes increased heat disapation and pain.
I also found that wearing steel toe protector boots made the symptoms a lot worse. I now use composite toe capped boots which are readily available, and they make a big difference.
Good luck and stay warm.
www.raynauds.org
The socks have Silver fibres in a special weave that actually work at keeping all my calves/feet/toes warmer than usual. The silver also has anti-bacterial properties which can help if the symptoms cause any infections .
I have used them for over a year now and they can be worn under nomal socks as they are thin enough so as not to affect tightness of your shoes,which in itself causes increased heat disapation and pain.
I also found that wearing steel toe protector boots made the symptoms a lot worse. I now use composite toe capped boots which are readily available, and they make a big difference.
Good luck and stay warm.
C8bof - unfortunately,can't fit handwarmers inside the vinyl gloves and cotton gloves they provide,have even tried heated insoles in my wellies,they only last for a few hours max,and if i were to complain about my condition to them they are the sort of company that will turn around and say if you can't do your job we will just replace you,not good to work for.
drdc1971 - thanks for that info,i'll ask the doctor what he/she reccomends,but have taken nifedipine already,but i'm willing to try anything else!!
Grumpybastid - thanks for the heads up on the socks,will give some a try,i too have to wear steel toe cap wellies which do make it worse,not just my toes that go numb,underneath my heels also go numb too!!
drdc1971 - thanks for that info,i'll ask the doctor what he/she reccomends,but have taken nifedipine already,but i'm willing to try anything else!!
Grumpybastid - thanks for the heads up on the socks,will give some a try,i too have to wear steel toe cap wellies which do make it worse,not just my toes that go numb,underneath my heels also go numb too!!
Edited by Marcia on Friday 10th February 22:20
I thought I had raynauds as I kept getting cold hands etc but turns out it was just poor circulation from smoking. Been quit for nearly 2 weeks and all signs of cold hands etc have gone
Those who get it really bad have you thought about increasing your circulation via some exercise? Just light cardio to get the blood pumping around you better. I think people overlook the benefits of exercise and go looking for cures from tablets etc. Apologies if you've already looked down this avenue but it's just a suggestion.
Those who get it really bad have you thought about increasing your circulation via some exercise? Just light cardio to get the blood pumping around you better. I think people overlook the benefits of exercise and go looking for cures from tablets etc. Apologies if you've already looked down this avenue but it's just a suggestion.
Hi Marcia, would you be interested in trying some Dreamskin gloves? (www.dreamskinhealth.co.uk) They're designed primarily for dry derm conditions, but the polymer regulates temperature as well as moisture and just might help a bit (I honestly dont know, but would be happy for you to try some just in case)
Nightmare said:
Hi Marcia, would you be interested in trying some Dreamskin gloves? (www.dreamskinhealth.co.uk) They're designed primarily for dry derm conditions, but the polymer regulates temperature as well as moisture and just might help a bit (I honestly dont know, but would be happy for you to try some just in case)
Hi Nightmare,be happy to try some,would try anything that would ease this,are they expensive?yeah they are....but they're also on prescription.....and seeing as I make them, this is definitely a 'free trial offer' 
As Ive said, I honestly don't know whether they will help - but they WILL offer superior temperature management to the ones mentioned on the raynauds site so it's got to be worth a try!
PM me and we'll take it from there
As Ive said, I honestly don't know whether they will help - but they WILL offer superior temperature management to the ones mentioned on the raynauds site so it's got to be worth a try!
PM me and we'll take it from there
Nightmare said:
yeah they are....but they're also on prescription.....and seeing as I make them, this is definitely a 'free trial offer'
As Ive said, I honestly don't know whether they will help - but they WILL offer superior temperature management to the ones mentioned on the raynauds site so it's got to be worth a try!
PM me and we'll take it from there
Ah this is why I love pistonheads. What a lovely and kind gesture As Ive said, I honestly don't know whether they will help - but they WILL offer superior temperature management to the ones mentioned on the raynauds site so it's got to be worth a try!
PM me and we'll take it from there
I've just started on Nifedpine as I've been told I may have Raynauds Phenomenom, they said some vascular test I did was positive. However I'm not convinced as my symptoms of pain and numbness are not confined to the extremities and although worse in the cold, I also get them in hot temps and whilst in a bath etc, and throughout the summer.
However, I was told that this medication and wrapping up warm is really all that can be done for Raynauds.
However, I was told that this medication and wrapping up warm is really all that can be done for Raynauds.
Well i got some meds yesterday,back on Nifedipine(Adalat)5mg,3 times a day,so far so good,not had a problem at work today at all,much happier!! side effects not too bad either,the last doctor who prescribed me it put me straight on a high dose 20mg,reckon that's why my side effects were really bad last time! Hopefully i am now sorted!!
side effects not too bad either,the last doctor who prescribed me it put me straight on a high dose 20mg,reckon that's why my side effects were really bad last time! Hopefully i am now sorted!!Gassing Station | Health Matters | Top of Page | What's New | My Stuff