Even with three pairs of gloves, the ... - Scleroderma & Ray...
Even with three pairs of gloves, the Raynaud's still gets me! been to the doctor but she says there's nothing she can do, is this true???
they do have some sort of medication but I don't really know much about it, doesn't three pairs of gloves have an adverse reaction because it would restrict the movement of your fingers and not let the warm air get to them.
PLease keep us posted on the outcome.
Philip
I have Raynauds and Scleroderma and am prescribed Adalat (nifedipine) and low-dose Fluoxetine (which is an anti-depressant but which works alongside Adalat to improve circulation in fingers and toes). Normally the combination works but I have still had ulcers develop and so I had Iloprost infusion for a week as a day-patient at the Royal Free, which has worked.
If you don't want to go down the drug-route I also take ginger and Gingko Biloba every day and have hand warmers, silver gloves or neoprene gloves with mittens on top! The secret I have found is to not let your core temperature go too low and your hands get too cold. If this happens, it takes ages to warm up again and can be excruciating, apart from causing capillary damage. Porridge for breakfast and plenty of hot drinks throughout the day and I have found vests to be indispensable, in spite of them not being very attractive but who cares!!
Ask your Rheumatology Nurse adviser or your Rheumatologist for suggestions with this very painful problem.
Hi Nocolanymph, unfortunately there's very little. We all suffer this differently, in my case - my feet even in a hot bath do not get warm etc, tried Nifedipine, Gabapentin, Amitriptyline - nothing seems to help 
having seen on here some people managed to get heated gloves through the NHS, I'm not one of them. How often do you see your Rheumatologist, maybe they can prescribe something or recommend something different?
whoops meant to say Hi Nicolanymph - my hands are cold and typing is haphazard.
Heh... there are dictation software that you can use to reduce the typing strain. Windows has it's own pre-built one but there are other alternatives. Should be under speech recognition.
It's true that can't 'cure' Raynaud's, but it's far from the fact there is nothing you can do. Raynaud's most problematic symptom for most is the colour change and lack of circulation. This is solved by over riding the bodies natural survival mechanisms with a medicine called "Nifedipene". There are also more advanced types of this that go up the scale. Iluprost being the final resort. (fed_up has highlighted other medication).
Then there's pain relief. Unfortunately, the ibuprofen line of medicines is something you're going to have to try to avoid so your doctor is likely to go down the codeine route instead. (Solpadol, Kapake and the like).
There are also common exercises that can reduce the severity of the symptoms by promoting blood flow. Nine times out of ten, you're not looking to solve an attack once it has happened, but from preventing them happening in the first place. Which is more of a challenge than it sounds, people have different symptoms. Stress/Anger for instance makes my fingers go red, but if I feel sad they start going blue...it's a reasonable indicator of mood sometimes on the other hand it can happen on the spot, or there are other varying factors. You'll learn them as you go.
Try getting a stress ball or two, then squeeze em a few times a day.
thanks, I'll try all the suggestions and look up Nifedipene! With me, its my hands that are the worst, can't go in a supermarket without my gloves and if it gets too bad, speech starts to slur as well. Id never thought of a stress ball though so I'll definitely see what I can get my hands on 
Your tongue gets affected or is it your lips?
Have you tried mittens instead of gloves? My hands freeze and go numb in less than a minute if I wear gloves. I also ise those hand warmers in my mittens when it is very cold here, I have the reuseable type and the disposable kind. Hope this helps.
im not sure whether its the tongue or lips off the top of my head but next time it happens, I'll take note haha and I have some handwarmers but no mittens so I'll try that, thanks Magicjake!
Like magic cake I agree, I suspect you need to think about the layering of the gloves. Probably if you can put moutaineering grade mittens on the outside which trap a layer of air and closer fitting ones underneath. Also trying to increase your circulation before you go out, run up an down stairs a couple of times, use the stress ball, have several thin layers around your core body. Avoid contacts with cold e.g strong cold winds, metal bits of shopping trolley as I find the Raynaud's is triggered quicker by a a temperature "shock". Just some thoughts, hope they help! c.
"Nifedipene" is too powerful for me, it increases blood flow to my ears that cause a burning type sensation, and to my head causing headaches:
For me (and we all vary) natural ginger (or pills, get high quality capsules) or Ginkgo Biloba pills quickly assist my circulation, without side effects and I can vary the dose to suit me and the inside/outside temperature - I can feel an almost instant warm feeling in my circulatory system - worth a try
I use natural ginger, from Hollands and Barrets cut up and added to my cereal
Its a cheap, instant, effective & easily controllable solution for me
They also have a pure ginger drink
I take Ginko daily & it has worked for me,Wearing gloves if your fingers are cold is no use as it insulates your cold fingers from warmer parts of your hands,whith no heat they can ony get worse.Thin inner gloves and good quality overmitts work for me
How warm are your surroundings generally? Last winter I did my best to keep the heating costs low. But this year I have really turned the heating up. It has made a huge difference but has also cost a lot more.
Other things that can help are eating things like porridge as this provides internal heating over a period of time.
Do not skip meals. To do so may increase the frequency of attacks.
it is pretty cold in the house because of the heating costs this winter but we have a halogen heater and an electric in the bedroom, I'll definitely consider more warming breakfasts though, especially before I have to go out thanks!
Hi nicolanymph. I've forgotten how many times I've had Iloprost. Losartan + Nifedipine means I don't get such long attacks, but I still get ulcers. I get that slurred speech, I think it's when the raynauds has got to my brain!
The trick to avoiding attacks from becoming severe is keeping core body temperature up. Sometimes I wear 5 layers of clothes, including thermals (they really make a difference). Natural fibres are best for trapping warm air (synthetics can get a bit sticky).
I wear arm warmers + gloves to make sure draughts stay out!
Drs cannot make raynauds go away, unfortunately. But we can do our best through non-medical means to keep it away. It takes time to adapt. We might end up looking over-dressed but those whom know + love us don't judge us for it.
thanks so much for all the great answers! I just had an attack in the supermarket but am now armed with woolly mittens and ginger (ginger in rice pudding is really nice), it seems like the next step is a spot of shopping - I've seen arm warmers so they'll be on the list as well. this has been such a great help
I totally agree with mittens, not gloves. Hand warmers in the mitts and also wrist warmers. (Mine are just simple home-made knitted tubes which I wear in the house as well as outside.) Hand warmers can be microwaveable, reusable or "once only". Look at the RSA website and shop. You can get penguin hand exercisers there as well. The RSA reusable hand warmers are nice because they are a bit bigger than the ones I've seen in shops and therefore last longer.
Also "yes" to porridge for breakfast!! And "yes" to layers!!
Never believe a no cure answer...please get the book Curing with Cayanne by Sam Biser....or read the blog I just wrote today and get started...njd
I get Raynauds in my hands and feet when I experience a cooler temperature change. Regardless if I'm all bundled up, if I feel the coolness on my cheeks/face an attack is triggered.
I suffer with my hands very bad. I have nifedipene 3 x daily 10mg. And use disposable hand warmers all the time. The re usable go cold with in 10 mins or so. The disposable stay warm for the 8 hours they say. Well the ones I use do. IV had some that stay warm for few hours only. So I order mine in bulk now. I also use wrist/hand warmers from tescos. Wear these all the time. Even I. Bed. And I have fingerless gloves that cover the wrist and bit higher which have mittons if or when needed that un button and U pull over ur fingers. Also from tescos. Put my warmers I that bit then. Still always in pain but help to keep my hands warm defo. Good luck to all sufferers x
thanks, my new mittens do seem to work so much better now, what is the general opinion of hand warmers - disposable or re-usable?
I'm on nifidepine, the first one I was given was too strong, my whole body went bright red , now on a lower dose but it only works for half the day. I can't get anything out of the freezer without an attack! I joke that I'd be the only person on the beach in the Bahamas with gloves on, I'm always cold.
Have you tried any of the heating aids which are available and very effective? The RSA has on online shop and also free leaflets which give lots of ideas on keeping warm if you don't want to take medication. Why not give them a call on 01270 872776 and ask for a free information pack.
Keeping our hands and feet warm are always so hard. I take nifedipine for my Raynaud's as well as high blood pressure. I use the heat hand packets that you open and they heat up for over 6 hours. I wear gloves then put mittens over them and drop in a heat packet. Work on the feet too, but be careful not to wear tight shoes and burn your feet.
The best thing I have ever been on for my Raynaud's was Generic Viagra which is sold in the US as Revatio. It is a vasodialator and opens the blood vessels. Saved me from having to have 2 fingers amputated. I had to work to get it approved by pharmacy but they did eventually come through (it is about $5.00 a pill her in the states and I took it 3 times a day at 20mg). I called it the wonder drug for me. It does not work the same for everybody but there are a few other brands available like Cialis and such.
Can you imagine that it was okay for men to use it to have sex but I couldn't get it to try to save my fingers. I stopped taking it about5 years ago because I had a heart cath that caused a heart attack and then bypass surgery (at 48) and now take nitroglycerin for chest pain and you cannot take them together as your BP will bottom out. Hope this helps and don't be afraid to ask for these drugs. If there is 1 thing I have learned from all of this is that you have to be your own advocate. Write down the things you want to discuss or have heard about want more information and make sure the MD answers all the questions. I hope some of this info might help you and wish you good luck getting it under control. If you have any questions please don't hesitate to ask. We have a support group her in Omaha, Nebraska so if I don't know the answer someone else probably will. Again, good luck and keep being strong. We all have bad days and then just move on the next.
I live in the US. My new Rheum. has prescribed Revatio (generic Cialis). I spent 9 days in the hospital, and had 2 surgeries over the holidays for a horrible staph infection caused by the ulcers on my feet due to Raynaud's. Iloprost is not approved in the US for Raynaud's unless you are already in the hospital and in a life-threatening situation. Thankfully, I was able to have Illoprost while I was in the hospital and it helped so much. I'm now taking Revatio daily. I'm female and it seems to have no side-effects. I'm also using Rogaine for Men on the bottom of my feet. Rogaine was also recommended by my new Rheum. The medicine in Rogaine opens up the blood vessels. It's an over-the-counter treatment for male baldness. The medicine in Rogaine is Minoxidil 5%. It's a liquid I apply 2x a day. All of these treatments are working and I am so grateful for my new Rheum. I also have lupus but was on too many immune suppressants. For now, my lupus is controlled and I've been able to cut back on the immune suppressants. Hopefully, I'll be less vulnerable to infections.
Try buying Organic extra virgin coconut oil and work your way up to 3T a day. It will rev up your metabolism and start warming you up.
Yes there is things you can do see a rhuemolisgist Theres pills and infost treatment
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