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#1 jd2011

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Posted 11 January 2011 - 10:25 AM

Hi I am new here. I am 19 years old and have had Raynaud’s for as long as I can remember. I was prescribed Nifedipine and have been on it ever since. Initially the nifedipine helped a lot in easing the symptoms but over the years it has been helping less and less to the point where it hardly helps at all. My hands are pretty much blue and cold all day every day (even in the shower) and in winter even with 2-3 pairs of gloves on they are really painful and I cannot move my fingers. My legs also go blue and have little red patches on them. My feet are the same and I have had an infection in my toes for at least 3 years and have tried just about everything but it will not heal and it is now really painful. Whenever I go to the doctor about this he just tells me its an infection as a result of my Raynaud’s and gives me the same antibiotics even though he knows they don’t work.

As the Nifedipine doesn’t seem to be working anymore I was wondering what other options are regarding treatment because I know I’m not going to get anywhere with my doctor!

Also, I am going to be studying Zoology in September which will require me to travel and carry out research even in extreme weather conditions (not the best thing to do with Raynaud's I know) so I would prefer to be able to actually carry this out without being in pain and have full mobility of my limbs! :P

So can anybody tell me what they have found to be the most helpful? I know there is no cure but is there a “quick fix” so to speak?

#2 Shelley Ensz

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Posted 11 January 2011 - 10:41 AM

Hi JD,

Welcome to Sclero Forums! I'm sorry you are having such issues with Raynaud's. Many of us have found it necessary to switch medications and/or make lifestyle changes to help keep Raynaud's under control. One lifestyle tidbit that you'll always need to keep an eye on is wearing tons of warm clothing, in layers and being sure to always keep your chest, head and feet very warm. Look for long underwear in sports stores, as well as hand warmers that can be used for feet, also.

I'd venture to say you'd benefit from studying all ourRaynaud's pages, as well as getting a consult with a vascular specialist, who can assess your situation and let you know your medical (and possibly even surgical) options. Generally, you can find great vascular specialists at your nearest major medical university and it's better to consult them before you develop a major situation (like amputation) than after.

Here are some warm hugs to tide you over. Please keep us posted on your progress, will you?

:emoticon-hug:
Warm Hugs,

Shelley Ensz
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#3 Amanda Thorpe

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Posted 11 January 2011 - 10:56 AM

Hello JD

Welcome to the forums! Although I have Raynaud's it's worse in my feet than my hands and I don't get the colour changes either. I've just developed a rather large ulcer on the back of my right foot and I suspect Raynaud's had its part to play in it as well as the scleroderma.

Shelley's already directed you to our best resources and given great advice so I'll just say take care and keep posting!
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#4 martinisweetie7

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Posted 11 January 2011 - 01:16 PM

Hi JD,

I'm 27, and I struggle with Raynaud's too. It gets especially worse when it's cold out. I take Nifedipine too. I've been on it for almost a year now. It works, but my hands and feet still turn blue and hurt constantly. To get through the day, hand warmers have become my best friend. I buy them in bulk at sporting good stores and keep them in my desk and my purse. Mittens help too, more so than gloves. It keeps your own body heat concentrated instead of separated with gloves. Mittens with little pouches in them to put the hand warmers in, so you get even more warmth, are also helpful. Besides running my space heater under my desk 24/7, that seems to help with the hands.

~ J

#5 CraigR

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Posted 11 January 2011 - 02:53 PM

As Shelley says, you must keep your entire body warm. Warming of hands or feet can be of little help if your body core is not warm. Thus, even with warm hands, a cold drink can cool you down and antagonize Raynauds. This is because the body naturally reduces circulation to the limbs when the core is cool (for everybody). It can be beneficial to become accustomed to keeping warmer than you might usually consider comfortable.

As for medication, I have taken nifedepine at times during difficult periods. Once, when it was not enough, I added the old blood pressure medicine prazosin (mini-press). It works in a different way to increase circulation, and together the relief was increased.

Other members have been helped by erectile disfunction drugs (viagra, cialis), as well as nitroglycerin cream. What works for some may not work for others.

I have found it helpful to go to the doctor (rheumatologist) with a list of possible vasodilating drugs or treatments, with the insistence that the present therapy is inadequate and MUST be improved. That's your call - not the doctor's! The question is not "what do we do, doctor", but "what additional therapy are we going to add since the current therapy is not adequate? - what about these drugs?"

A good doctor will like this approach. If a doctor admonishes you for "playing doctor", you need a new doctor!

Some doctors are hesitant because vasodilators tend to lower blood pressure, which can lead to fainting/blackouts upon rising. You can monitor this with a blood pressure device that can be bought at any pharmacy. This may help with a doctor's concern.

Best of Luck,

Craig

#6 Jeannie McClelland

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Posted 11 January 2011 - 03:38 PM

Hi JD,

Welcome to the Forum! Raynaud's isn't much fun, is it? You've gotten great advice, so I'll just mention one thing that I've found I have to be careful of - grain bags. It seems they draw moisture and then when microwaved to reheat them, they get a little steamy. That evaporating moisture has set off some really nasty episodes. I've tried popping the bags into heavy-duty freezer bags and then into my pockets, but in the end I've given up and gone with the disposable "hottie" packs. They last longer anyhow! :D

I hope you'll post often and let us get to know you. Good luck with your Raynaud's and your studies!
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#7 Joelf

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Posted 11 January 2011 - 08:07 PM

Hi JD

Welcome to these helpful and friendly forums!

Sorry to hear that you're having a problem with Raynaud's. The other members have given you very good advice to which I can't really add anything except to say that I also suffer with Raynaud's, so can really sympathise with you. I've found that it seems to be much worse if I allow my core body temperature to get cold and it always seems to be worse just after I've eaten breakfast, so the only thing I can think is that my body is taking blood from the extremities to my stomach to digest the food. Possibly my circulation is a little more sluggish in the mornings, too.

Do please keep posting; I'm looking forward to getting to know you. :)

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#8 Sacha

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Posted 12 January 2011 - 11:16 AM

My daughter Katie has suffered from Raynaud's for a year now with her fingers and toes turning blue in the cold. She also has a tendency to turn a bluish/grey colour when she is feeling cold.

She was complaining more and more of feeling so cold and getting pain so the reumatologist at Great Ormond Street recently put her on Glyceral Trinitrate which come in patch form which she applys daily (She only has a 1/4 of a patch a day). She is only 8 but says that she definatly feels warmer and has not been complaing of numb toes and fingers so I think they may be working.

They dialate the blood vessels I think making circulation better. Hope this helps.

Also have you tried a wax bath, they too are ment to help with circulation.x

#9 jd2011

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Posted 12 January 2011 - 12:21 PM

Thanks for the helpful replies everyone! I am going to see if I can get my doctor to refer me to a rheumatologist and take it from there.

Shelley I heard about the sympathectomy for Raynaud's and people saying they saw the results really quickly, and I was thinking about this especially as I will be moving to a city that is even colder than where I am now later on in the year, and I will have to be able to work in treacherous conditions. But I thought they would only consider this an option if you had digital ulcerts, gangrene etc?
Can this same procedure be perfomed on your feet or is there a different one?


"A good doctor will like this approach. If a doctor admonishes you for "playing doctor", you need a new doctor!" - Craig that is exactly what my doctor does! My nurse however isn't like that so I will ask her about it and she will more than likely get a referal for me!

#10 Sweet

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Posted 12 January 2011 - 03:32 PM

Hi Jd! Just wanted to add my welcome! I'm sorry you are dealing with the Raynauds. You've received some good advice thus far, so I'll just give you a hug! :emoticon-hug:
Warm and gentle hugs,

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#11 janet905

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Posted 12 January 2011 - 06:59 PM

Hi jd2011

Be careful with doctors who tell you it is just a bad case of Raynaud's. Some of them don't fully understand the difference between primary and secondary Raynaud's. In most cases primary Raynaud's does NOT cause ulcerations and gangrene nor does it cause deformity or changes in the nailbeds. This would be a connective tissue disease such as scleroderma and you need to be examined by a rheumatologist that is well-schooled in connective tissue disorders.

I started out on nifedipine also, but as my vascular problems intensified I soon switched to viagra. This drug saved what remained of my fingertips. It also helps the pain in hands and feet as it allows more oxygen to reach my extremities.

Good luck!

#12 omaeva

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Posted 13 January 2011 - 08:23 AM

All the advice so far is really great. I just wanted to add that, put your gloves on while you're still warm, not when you start feeling cold. Sometimes switching to mittens might work better, because your fingers are together and will stay warmer. On top of it in the winter (even in sunny California) I wear the fingerless gloves at work, all day, and then switch into regular gloves right before I go outside.

All in all I've had some medications work, others not, and others I couldn't handle and I am now going to be having surgery.

#13 enjoytheride

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Posted 13 January 2011 - 04:38 PM

Re: keeping warm- boots and gloves using thinsulate work well for me and are usually less bulky. Many different manufacturers use this in their gloves and boots. There are a few boots that are so insulating that I can't wear them unless the temperature is below 30 degrees f (have no idea what that would be in centigrade.) They are too warm otherwise.

I also keep gloves and boots inside where it is warm so I don't have to spend body heat warming them up when I go out.

There are also boot warmers like the hand warmers mentioned above.

I know it is hard to be firm with your doctor, especially when you are so young. You suffer a double whammy of being young and not a doctor. But your doctor should either offer you another treatment or a referral to another doctor.

Good luck and warm hugs to you.

From not so sunny part of California where it's either snowing or raining all winter long...

#14 jd2011

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Posted 14 January 2011 - 08:45 AM

Hi Janet - I didn't know that. Thanks for the heads up!

enjoytheride - I never thought about my age being a factor before but you're probably right because whenever I try and be "firm" with my doctor he cuts me off mid-sentence like I have no idea what I am talking about.

I have an appointment with my nurse in 2 weeks so hopefully I can get my referral.

#15 Snowbird

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Posted 14 January 2011 - 01:55 PM

Hi jd2011

Welcome aboard! I'm a little late chiming in but I see you have received great advice already. I can't add a lot more but here goes since Raynaud's is also a fan of mine (you'll notice I didn't say he was my fan :o ).

I change colours when I simply wash my hands or change clothing, etc like you but it sounds like your episodes are more extreme and more painful than mine as of yet. I've just started the blue thing this year. I have also finally learned it extremely important to keep my core temperature warm (not just my hands or feet). I'm not on meds yet either. Both my rheumatologist and family doctor tell me that I need them when I need them (so it's just like Craig said, they will give them to me when I ask for them, no doubt about it, they both assured me of that). I don't want any meds yet though because I have minimal pain and am still in a tolerable position...but when it comes time, I will certainly ask for it then.

I'm really glad you are going to see a specialist....I hope you also see a scleroderma specialist. It is really important to have a good doctor that understands this disease and works with you, not against you. It unfortunately can take some time and you may need to go through a few throw backs, but never give up until you find the one that is just right for you! Let us know how you make out.
Sending good wishes your way!