Scleroderma & Raynaud's UK (SRUK)
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Raynauds?

Raynauds?

Hi. I kind of never look into forums, and such places, but I am tired. Literally tired. I think I do have Raynauds. All started last end of August / start of September when one toe turned white and numb while I was sitting on bed with nitebook on my lap. I was surprised but what did I know or thought, so it passed. Then numbness returned with temperature decreased outside. Numb were at least two or more toes on each of feet. It became nightmare as I didn't know what it is only that going out turned as hell. Went to general doctor who sent me to rheumatologist. Rheumatologist checked me and sent to vascular surgeon as she said all from her side seems good. Blood test on many many things very decent. Vascular surgeon checked me and sent to capillaroscopy, and Doppler ultrasound. All from there perfect. So basically on last visit vascular surgeon just shrugged shoulders and said I can try to visit hematologist ( sure it is crap as I did sooo many blood tests and same as hematologist would send me again) to where I did not go anymore. I am tired 33 years young man. Literally 6 months of constant feet, heel and toe numbness. It all goes numb white then purple little bit sometimes afterwards and then bright red. Burning, tingling feeling is daily. Even at home now when I'm not even going outside. What the hell indeed...i am clueless. I was smoker for 17 years (pack per day) and quit now for month. Don't feel any changes whatsoever. Trying to walk for 30 min daily. For years I had very sitting job in front of laptop for 12 or more hours per day + alot of coffee and cigs. Had extreme stress and actuall stull have as i was fired last November. Only best thing is I don't sit such hours anymore but stress is there. So to conclude It started all at vert stressful time when I was sitting 12 or more hours, drinking 5 cups coffee or more and smoked pack per day. I know it is circulation issue definitely because of obvious symptoms o have. Only from test side and doctor side I am ok. So what the he'll? Idiopathic raynauds? I mean my nerves are bad all my life and I was super stressed about my health and always did checkyps for lungs heart, blood tests etc. All always were good even as being smoker. So now I don't smoke but why I don't even slightest feel good? Damn heels Burning, tingling while I sit, stand. By the way 3 causes of toe turning numb and white I found. Stress, cold temperature, physical activity if it is strong or very intense. Can somebody please share with me ideas? I just want to move on with my life. Picture for knowledge how it looks. Thank you very much.

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Sorry for spelling mistakes typing is terrible, but fast :)

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Hi Miks84

I wrote you a long reply but lost it 😶

I've attached a link which explains about raynauds, which it does sound like you have.

Hope you get treatment and answers soon

sruk.co.uk/raynauds/what-ra...

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there is two types of Raynuads primary and secondary primary is it's own thing an attack lasts a short while.

where as secondary is part of something else like MS/Fibro/Lupus etc etc it lasts longer.

Mine would be secondary even though Quack said primary! as ive fibro and mine lasts longer plus have poor blood flow in feet re Dopplar test.

Cayenne pepper and ginger in your food helps

It will take a good while before lack of smoking takes effect as all the nasties are still in your body but a good workout helps plus keep away from alcohol as well.

Decent footwear is good as supports the footbed

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Hi Miks, I think it is great that your doctor ordered all these tests. I have had Raynauds for years and all the doctors tell me is "you just have to live with it". I have never had any tests at all and would be interested to hear if anyone has paid for private blood tests. I have Thyroid problems and pain all over, think i might have Fibromyalgia, a lot of doctors think it is all your mind. Would love someone to take this condition seriously. I hope you get to the bottom of your problems. Good luck

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Hello Miks84 - all sounds familiar and, as the others say, you very lucky to have seen all those different specialists. The ultimate test for Raynauds is one they do at Royal Free Hospital in London, when they inspect the capillaries towards the nail cuticle. Don't know where you live, but there are similar in Leeds, etc. I too went to many specialists (you missed out the Neurologist!) and tried on various meds, most that made me zombie-like. The best I have found is Felopo

Hello Miks84 - all sounds familiar and, as the others say, you very

lucky to have seen all those different specialists. The ultimate test

for Raynauds is one they do at Royal Free Hospital in London, when they

inspect the capillaries towards the nail cuticle. Don't know where you

live, but there are similar in Leeds, etc. I too went to many

specialists (you missed out the Neurologist!) and tried on various meds,

most that made me zombie-like. The best I have found is Felopodipine

which is the old Prozac 20mg. This has been very good and last week I

went out without gloves, but not today. I expect their is a lot of

damage to your small arteries and capillaries from smoking but brlliant

that you have given it up as best thing you can do for all your health. Substitute some good decaffienated coffees for your regular ones. You gradually find you don't need the "hit".

I am sending this as my computer playing up and I don't want to lose what I have written. Wish you well.

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Thanks everyone for answers. I appreciate, and feels better to know that I am not alone with this thing. I am out of UK now so particular recommended place can't visit unfortunately, but will look into this info about what they offer. I know that smoking destroys many things and body needs time to recover after many years of abuse. Never actually thought how bad smoking can damage circulation too. I still do like coffee indeed... it is very hard to say no to coffee. Alcohol well I did like to get wine/beer at evenings quite often last year. Kind of helped me to cope with stress. Sure it is not solution. Now when drink some wine all cold goes away as well tingling stops for all evening. But in general I am clueless when it will stop if ever will stop. I will exercise more that I promised myself. As I said it is very unpleasant when at start of exercise some toes get numb and pale but after 15 mins if continue exercise becomes better, toes in more normal color. Is it due to cut blood flow to extremities to supply muscles at that particular moment? That's what I read at least. So anyways cold, exercise, and stress is triggering these all symptoms that far I know. Weird is that I feel this tingling more often (while sitting mostly) than two months ago when o just had numb toes outdoors when low temperature. Nights i sleep very good and toes are warm and nice when I wake up. Cayenne pepper and ginger will try to use. What othe blood circulation supplement would recommend? Ginkgo biloba? Garlic capsules (That is the right name I guess)? B12 vitamin? I mean there is many things but I heard about these. Omega3 probably too? About docs, yes I tried to kind of visit all I could mange, but as we see here I am yet :) not much more smarter than before. By the way thyroid is checked too all perfect. Forgot to mention that when I sleep in bed on my back leaned by pillow slightly, and hold in arms tablet/phone ( you know position we all do have) I feel in fingers slight tingle too, in few digits. It is very small and not so annoying at all but just same tingle only way way less and only when arms are folding for longer periods. Strange too. I thought about spine but can't be. Had chest x ray, and small scoliosis was there. Last summer went to doc as one side of chest was in slight discomfort (got scared it is from smoking :) ), but it was from bad sitting posture. Nothing else as new exercises doc didn't mention and on x ray nothing was found besides slight scoliosis. Anyways guys thanks for help and I appreciate any recommendations.

Miks.

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And for now very very strongly thinking about moving in near future to warm climate. I always hated cold, but this winter was something out of my patience comfort zone. Only problem is how to move and work in warm climate what could help to my issue. California, and South of France, South of Spain was the best climates I experienced so far. Any raynauds person who experienced change of climate positive effects?

Miks

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I now live in Florida...It would kill me to move back to Philadelphia, which is where I am originally from. And even in Florida...the few weeks it gets chilly here has a dramatic effect on me. Warmer weather has definately helped me.

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Caffeine and stress can both cause raynaud's to be worse-the caffeine is easy to eliminate, the stress-not so much.

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Yeah i agree stress management is another thing. Stress is toxic part of my life, I know that, but hard to do something with it as we are all thrown dat to day problems, only how to respond is biggest issue. I try some breathing exercises too, some basic meditation started. Don't know if that will really help. Really wouldn't like to take some medicaments...

Miks

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I mixed up the name of 2 meds beginning with 'F' - NOT Felodopine but FLUOXETINE 20mg which is the old Prozac. Doesn't make you fugue or, unfortunately, "Be Happy". It great for what you have. I used to call my feet "frozen slabs of meat" but now they much better and even my toenails have grown.

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Gingko Biloba is really good, takes about six weeks to get into your system, but after that you really reap rewards. Good luck in managing your Raynauds.

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Mike...I have it in my hands and feet. Yes is it is Raynaud's per my doctor and Yes it can be very painful. I use a cream called Nitro-Bid which is a Nitroglycerin cream that opens up the capillaries for increased blood flow. My doctor also has me taking 81mg aspirin too. My Rheumy is the one who prescribes this for me. Perhaps seeing a different Rheumy. Also I use special socks and gloves that I got at firheals.com Their infrared gloves and socks that help a lot.

Good luck

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Thank you all for responses. Been to neurologist too now. As she said i have all reflexes perfect and she could not wrap her head around my symptoms. Said that some of can might be related to neuropathy but some does not fit. She mentioned raynauds but then again my hands are great and capillaroscopy didn't show anything. She gave referral to electromyogram. Soonest time I can get is June. Polyneuropathy she referred to look for. But I asked if it would be that what to do, she said nothing much as cause is idiopathic for now from all what was tested. I am clueless but I wouldn't like to have idea about this disease as it damages nerves and if cause is not known then...well I am left with it. But anyways it is only of that would be proven. I wanted to ask if anybody have here some neuropathy too and what are their experiences. As well I don't understand thing with my daily walks. I walk hour or even two and after legs and mostly feet are dead tired. Anyone have same thing? Does anyone have feet sweating, palm sweating, burning in feet, tingling in feet too? Is that can be related to raynauds? My white toes happen from physical activity like bending in knees for some time or squats, or fast walking. Anybody have same? Stress makes feet colder physical activity white toes and cold weather white toes. They get white, then little bit purple, and then red. Nothing really changed in 7 months of my "experience" with this, only these pins, needles and burning started 1,5 months ago or so. As well I get fatigue fast when go for walks and sweat alot. I always had sweating issues but now on spring I do sweat alot when walk. Anyways sorry for so long message but I hope somebody can reply on it :)

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