Hi all. Has anyone got much info/experience on the varying treatments for raynauds?
I struggle with the medications having much affect on my flare ups and suffer terrible with side effects. Have tried nifedipine, sildenafil and the iloprost infusion. None seem to manage my condition well.
Any thoughts on help? Warm clothing, compression socks and clothing alongside a healthy, non smoking lifestyle are already in force and always have been.
Thanks in advance.
Disposable hand warmers inside mittens/pockets are a must for me. I don’t tolerate any of the meds.
I got some of the foot warmers as I suffer more with my feet than my hands but I’m finding my symptoms are already starting to flare up over the last week with the varying temp and weather. How are you finding it?
Agree, definitely worse in the past week or so. Had a pretty bad one yesterday in my hands. I find that just using warm clothes and gloves simply does not work for me, but if I keep my hands toasty with hand warmers then my feet stay okay too. At work I make sure I have a jacket with pockets so I can slip the warmers there and put my hands in the pockets as much as I can. My biggest challenge is when working on a computer, my mouse hand really suffers then.
Hi Pino.
I struggled working in the office as well because my mouse caused raynauds flare ups.
Why don't you speak to your employer about your condition. In the UK your employer should be considered to any health conditions and should adjust your workplace if necessary.
I now work with a heatible mouse and it does wonders 
In the summer I switch off the heat function and have a normal mouse.
If your employer is not willing to provide you one you could buy one on your own and take it home with you after work or if you have to work remotely.
It sounds as though you are doing or have tried all the conventional things. I struggle very much too and havnt tolerated most medications, but have found sildenafil to be helpful and doesn't drop my blood pressure and make me feel very poorly like the other things. I take it 3 x a day and having had a lot of flares recently my specialist has recommending I take 2 tabs twice a day. I also have little wheat bags I can warm in the microwave as well as little re chargeable pebbles that are really good that fit in my pockets or tuch in my gloves. Like most conditions, it's a little bit of trial and error. I hope you find something that works for you and if you do, then let us all know. Good luck ❤
Thanks for your reply and guidance. Yeah I was on 3 x sildenafil a day but didn’t find they helped with the symptoms but the side affects of dizziness, nausea, headaches and digestive issues were too much to handle without any elevation of flare up symptoms. I have the foot warmers for bad flare ups but the last week has seen me unable to get into the garden to finish some projects that need to be completed before winter.
Have you found any flare ups with the varying weather and temps?
I have several flareups a day, but havnt had any digital ulcers for about 3 years since being on the sildenefil. although they don't stop the symptoms, they must be doing something. Just touching things like clothes when folding them is enough to cause a flare. I'm not sure if you have scleroderma as well, like I have, but everything altogether can be a struggle. I try to stay positive and keep going, but it's difficult. This forum does help as lots of useful advice and support from fellow sufferers x
I’m currently being tested/ monitored to see if I have scleroderma- what have you found the symptoms you have of this is? Some days it’s a struggle to stand in front of the cooker to make my evening meal and every little trip out has to be thought about in terms of coats/socks/shoes required, activity/length of time. Supermarkets are the worse even if I literally pop in for 1 thing.
The forum is such a friendly and helpful reminder that there is a bit of a community that understands as there’s only so much you can hear ‘just keep warm’ or ‘it’s not that cold’ x
PRAZOSIN 1MG OR IF YOUR IN PAIN TRY (WILD LETTUCE EXTRACT) MT ROSE HERBS OR EBAY I USE IT WORKS GREAT FOR PAIN PLEASE TRY AND LET ME KNOW. LOVE JULIE
I’ll have to have a look and order some. Will let you know. I started taking circumin (active ingredient in tumeric) to see if that helps too.
My favourite comment from people is 'you don't look ill' they want to try my body on and see how it feels lol. I think for me the worst symptoms are the fatigue and constant pain and stiffness I'm 50 but feel much older, which is really frustrating as not so long ago I was really fit and led a normal life.
Thats not good at all, must be difficult and just because someone doesn’t look ill doesn’t make it any less of an illness.
That’s what worries me the most as I’m very active - 5/6 gym sessions a week and love walking. If there is more to this and it starts to affect my active lifestyle I don’t know how I’ll mentally cope with that.
A friend gave me some fleece fingerless gloves from annafalcke.com. These fit from the knuckles (with a hole for the thumb) way past the wrist. I find these invaluable when I am on the computer, and have bought pairs for other friends who suffer with Raynauds, who are equally as enthusiastic about them.
I will have to have a look. I find when I’m say at my desk my feet go freezing in no time despite the thermal socks and heat!
Do let me know how you get on. Don't know if anyone does a similar thing for feet unfortunately!
I have suffered from Raynauds for as long as I can remember. Nothing seems to work. Calcium channel blockers never helped and caused terrible side effects. The same with vasodilators. What bothers me most is why restaurants, offices, medical buildings, anywhere really, feel the need to make the a/c so cold we freeze to death! I actually told my cardiologist to turn the temp up or I needed to go elsewhere. It’s so cold in there my bp goes up from shivering and they can’t use the finger contraption to check oxygen or pulse because the blood is gone and fingers are completely white. What really gets me is I live in Florida since my vascular surgeon in Michigan told me I had to move or lose my fingers and toes. We moved here in 1987 and freeze every time we enter a building here. Why don’t people realize most folks don’t want the a/c so cold they need a jacket to enjoy a meal or worse yet have to work in that cold all day?! I have found the disposable hand warmers in my pocket do work well unless you can’t keep your hands in your pockets all day.
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