Just been diagnosed with Raynaud's a ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Just been diagnosed with Raynaud's a couple of weeks ago

Pam45 profile image

I have just been diagnosed and am very grateful to have found a forum which might offer support. I first realised I had a problem when my feet got icy cold and it took ages to warm them up again. Then realised my hands were affected too. Convinced my problems were brought on by stress. I got very worked up about a bout of sciatica which started in December. The problems with my walking still aren't resolved but I have given up stressing about that now as the Raynaud's is devastating. So I have gone within a few months from someone who loved the outdoors to someone who is housebound. I have loads of questions. Firstly is there anyone else out there who feels their Raynauds' was caused by stress? I am 68 and looking back on my life I can see that I have always been an emotional person, was stressed by my work, was stressed by bowel problems I had about 7 years ago etc. At the moment it is the cold that stresses me- even in May I find I can't avoid it. As well as my hands and feet I am feeling the cold and tingling on my face. It feels as though my whole circulation system isn't functioning. Then when I get warmed up I overheat and sweat. this is especially the case at night. I wake up most nights about 4am and mostly can't sleep again. A very understanding GP prescribed nifedipine, and I am taking 10mg three times a day- just for the last fortnight. As I understand it this drug would work within an hour or so if it was going to work at all, but so far I haven't noticed any effects ( or side effects either). I'm not sure if he will let me increase the dose as I am 68, and also because I am in the normal range for blood pressure. So I am keen to hear from anyone who feels their Raynaud's may have been caused by stress. I am not on any medication for stress at the moment. I am trying relaxation exercises, but that doesn't really seem to help when you are faced with a blast of cold air.

Many thanks for reading my post.

36 Replies

Nifedipene didn't work for me was even prescribed Viagra I'm 51 and iloprost infusion nothing has worked, have irritable bowel and mixed connective tissue, for past 4 years low sodium levels witch can't get control ofSorry not much help

Pam45 profile image
Pam45 in reply to Deby177

Hello Deby. Thanks for your reply. Sorry that those medications haven't helped you. I'm hoping that the GP will let me increase the nifedepine before I try anything else.😀

I have had Raynauds for many years now, it's definitely got worse but doctor never offered me any treatment and just said keep warm. I think I have a more concerning circulation problem as I have fluid in my feet. When I get in the bath my toes are all white, eventually they get warm through, but it doesn't last. I try to keep active as sitting doesn't help. I even bought a Revitive, which although I use it every day , doesn't seem to have helped. As for the stress, I too have had my fair share but I can't say it makes it any worse. I have tinnitus too which does get worse when I am stressed. I am hoping when our doctors start seeing patients again I can explain all this face to face, I am not good on the phone and get flustered. Hope things improve for you soon.

Pam45 profile image
Pam45 in reply to wednesday

Wednesday, thank you so much for replying. I realise that I was very lucky to have found a GP who really listened to me. He offered me the nifedepine during my telephone appointment. Yes, telephone appointments are difficult. I wrote everything down before my appointment and just read it out to him. I'd encourage you to do the same. Yes, keeping active helps, though I haven't been outside much because of the cold, so keeping active indoors id difficult. There is only so much housework you can do.

I can't help on the raynaud's being caused by stress but I just want to say how much I understand where you are coming from about being cold. I find it impossible to get warm just now and it turns into a vicious circle, I get cold and my hands flare up, I feel unhappy so tend to sit around huddled in whatever I can find to stay a bit warmer rather than doing things. On warmer days I am more active and that means I have less time to think.

Pam45 profile image
Pam45 in reply to glasslass

Thank you for your reply. We just haven't had so many warm days here recently(UK). I am longing for some weather in the low twenties so I can enjoy my garden. Anything less than that is too cold for me and I have to turn the thermostat up to 21 degrees to get comfortable. Just wearing extra layers isn't enough, as I get cold prickly feelings on my face as well. And getting too warm is bad too. That makes me sweat, so I have to peel off a layer, cool down very quickly and then it all starts again. Yes, being active is good and having less time to think. Do you take any medication? Very best wishes.

PRAZOSIN 1 MG ASK YOUR DOCTOR MAKE NOISE. 2ND. TRY WILD LETTUCE EXTRACT ITS GREAT FOR SEVERE PAIN. MEDITATION AND MINDEFULNESS CAN HELP ALSO. YES STRESS MAKES MINE WORSE. I DO ART THERAPY, TAI CHI IN A CHAIR EVERY DAY. LOVE YOUR SELF. SELF COMPASSION. GET ANSWERS ASK FOR HELP DO NOT TAKE NO FOR AN ANSWER. LOVE JULIE

Thank you Julie for suggesting two more things for me to try. It's good to know that there are many alternatives. I hope I don't have to try too many before I find something to help. Best wishes

Hello Pam,I can empathise with you.

I am on the same dosage as yourself three times a day.

Whether it is caused by stress I couldn't tell you.

Mine started in the tip of my middle finger in summer of 2011, I was 47 but didn't see my GP till winter 2015 when my hands were really bad with, with tingling and discolouring, pain.

I too feel the cold terribly and can be sweating especially in the evening, my understanding is that it's to do with the capillaries not opening enough to let the blood flow.

I would suggest that if you feel no benefit from the Nifedipine to go back to your GP and explain everything as you have here. I know there's a slow release form which I find works better for longer, which I have had when the Pharmacy had no Nifedipine available.

I have various disabilities and have to say the Raynaulds affects me with holding things as. my hands will lose their feelings and grip.

I hope this helps you and wish you all the best.

Kind regards

Pam45 profile image
Pam45 in reply to Dizzy64

Oh, Dizzy, thank you for commiserating with me. I am sorry to hear that you have got other disabilities as well. The sweating is a real problem for me especially in the middle of the night. I think it happens in the evening and at night when you do eventually build up enough heat. Just this morning I decided to stop using my winter duvet but have lots of thinner layers instead so I can toss some off in the middle of the night if I need to. I don’t know if it will work but I’m longing for a good night’s sleep.

Best wishes

Dizzy64 profile image
Dizzy64 in reply to Pam45

Dear Pam45,Thank you, but I don't let it all get me down. I've 2 lovely Grandsons, who love to sit on my lap and have a ride around with me on my powerchair lol.

I know what you mean about the sweating in the evening and about 4 in the morning, you've done exactly the same thing as I have putting thinner layers on the bed.

Raynaulds is a form of arthritis and an auto-immune disease which I didn't know till recently.

My advice to anyone is if the people that should be listening and aren't make a nuisance of yourself, and make yourself heard, also make lists of things that you want to know. Never be afraid to ask.

In winter I find ski gloves work well to keep your hands warm and thermals, as I find if I get cold I feel it to the core of my body, also natural fibres work better than synthetic.

All the best and hope this helps xx

Pam45 profile image
Pam45 in reply to Dizzy64

Thank you Dizzy. it's great to be a positive person, as you clearly are. I find it hard to be positive although I know I have much to be thankful for. I did sweat less, with the layers in bed last night, but still didn't sleep that well-I guess the not sleeping is a habit now. maybe things will improve.😀😀

Dizzy64 profile image
Dizzy64 in reply to Pam45

Good Morning Pam45,I'm glad to read that you slept better.

I don't sleep well myself 5hrs is a good night.

I personally don't worry about it, as if I need a kip (usually I hit a 'wall' then I know my body is telling me it's tired.

I understand that this is all a new diagnosis, and the best advice I can give you apart from what I put in my first reply, is try not to over think things, which we're all guilty of and go with the 'flow' of what your body is telling you.

I always say " it is what it is and I can't change what I've got so I adapt to my disabilities'.

It takes time to accept and adapt give yourself that time.

I hope this helps you.

If I can help with advice, it's not a problem I'm more than happy to.

No problem.

Kind regards,

Liz xx

Dizzy64 profile image
Dizzy64 in reply to Pam45

P. S. Keep smiling 😀😀

Pam45 profile image
Pam45 in reply to Dizzy64

Thank you so much Liz. I know you are right- good not to overthink. It's so generous of you to help me!

Dizzy64 profile image
Dizzy64 in reply to Pam45

Pam45 you're more than welcome, I know what you're going through. It's so dabilitating, until your meds are right and once they're at the right level it makes such a difference.Best wishes,

Liz💐😀

I have mild Scleroderma having been diagnosed 15 years ago. Stress most definitely aggravates Raynauds.

It has taken me many years to be able to continue with the walking I love. I now have hand and feet warmers which I use along with silver gloves and mittens.

I can't say the medication has really helped me. It is all about layers and keeping core temperature up so hats neck warmers etc.

Pam45 profile image
Pam45 in reply to Fishie1

Hello Fishie. Thanks for your message. I have seen the silver gloves on the website and wondered if they really do make a difference. I think I would wear them inside another pair of gloves or mittens. What do you think? And what are the foot warmers you use? I am dreading the winter as I haven’t experienced one since I developed this. Best wishes

Fishie1 profile image
Fishie1 in reply to Pam45

I use Hot Hands Warmers for both feet and hands. They begin to heat once you open the packet. You place them inside gloves and shoes. They last 4 to 6 hours . I also wear the silver gloves inside thermal mitts or on own in warmer months.

Pam45 profile image
Pam45 in reply to Fishie1

Thank you for that. I think I will order some silver gloves, then,😀

I found several natural was to deal with Raynaud's and stress and it has absolutely changed my life for the better! I greatly increased my magnesium, potassium and, healthy fat intake and (olive oil, avocados) I had a sharp decrease in attacks (5 to 10 a year compared to that same amount in a day). When an attack does occur or when I'm feeling really cold I eat a small can of beets and in an hour I am warm and normal. For stress, I take 200mg of L-theanine supplement as needed. It works within 20 mins give or take.

Also, for reference, I'm 38 yrs old and I've had Raynaud's since I was a child.

Pam45 profile image
Pam45 in reply to Beets4Raynauds

Thanks Beets. I'm assuming that is what we call beetroot in the UK? I have some in the fridge, but not sure I could eat a whole lot at once. Interested to hear about that supplement you take too. lots of good ideas.

Hi Beets4raynauds,What amounts of magnesium and potassium are you taking? And how about olive oil?

Do you simply cook with it or consume even more on top?

Hello. As you have no doubt gathered, everyone is different! My Raynauds is definitely made worse by stress. I was diagnosed 15 months after a major mental health trauma suffered by a family member. Even now I know stressful situations cause a flare. My medication is 50mg sildenafil 3 times a day. My consultant also suggested I take an anti anxiety medication once a day. I am on fluoxetine. The logic is that by keeping calm your body tends not to clam up thereby causing an attack. I still get bad days but not that often. Still wearing lots of layers even though it is supposed to be spring! I find keeping my neck warm helps the rest of my body. Take care.

Pam45 profile image
Pam45 in reply to frannydavis57

Thanks Franny, more good advice for me. Yes I think I'd like to try those two drugs as I have read about them. I am to ring the doc next week. He may decide to increase my dose of nifedipine as it doesn't seem to be doing anything yet. If he won't do that I'll be hoping for a try of something different. Yes, you are right- what is good for one person isn't necessarily right for another. It might take a while to find something that helps. Best wishes

Pam45 profile image
Pam45 in reply to frannydavis57

Hello again Franny. I just wanted to report back to you that my GP has put me on fluoxetine. I picked it up today and will take my first one tomorrow morning- recommended to take in the morning if you aren't sleeping well. Just hoping for no side effects. I have also increased my dose of nifedepine to 20mg 3 times a day. Took my first dose this afternoon. I thought I detected a warming of my lower legs for an hour or two afterwards, but I was already in a warm living room and could be to do with the weather. Will take much more than that to really help, but I think 20 mg is the maximum dose. Did you try nifedepine at an point?😀

frannydavis57 profile image
frannydavis57 in reply to Pam45

Hi. I did try nifedepine but it had no effect at all so put onto sildenafil. Hope fluoxetine helps with stress. Take care.

Pam45 profile image
Pam45 in reply to frannydavis57

Oh thank you for replying. Hope you are beginning to feel the benefits of the slightly warmer weather. It is going to be much warmer on Thurs- can't wait! Is the sildenafil helping at all?

frannydavis57 profile image
frannydavis57 in reply to Pam45

The sildenafil does help me. I have been on it since Nov 2016. I currently take 50mg twice a day with the option to take another 50mg if I am having a bad day. As so many people have said, everyone is different. I tolerate sildenafil well but it is not for everybody. Take care.

Pam45 profile image
Pam45 in reply to frannydavis57

Franny, really indebted to you for your reply. It's useful to know what my options are. I have just two days ago increased my dose of Nifedepine to 20mg 3 times a day and I think it's having a slight effect. I have experienced a warm buzzing feeling in my lower legs about half an hour after taking it, but I don't think it has reached my feet or hands. Doesn't last long either. I don't know if the dose can be increased any further as I am 68. Thanks

Anibeth

I realised that stress can bring on my Raynauds as well, unfortunately we cannot always control what is causing the stress but just knowing why I am having an attack without feeling cold, helps. I read recently about this and realised it wasn’t my imagination! Could you ask your GP to swap you to Amlodipine instead to see if that works for you. Take care.

Pam45 profile image
Pam45 in reply to Bkart

Thanks for taking the time to reply. I have just read your own posts. I hope you are making progress- you have lots to cope with. It's good to share and other people on here really understand 😀

Have had Raynaud's since I was a child but it has got a lot worse over the past ten years, now 81. I do still go out in the winter wrapped up warm. This year I got some merino wool vests which are very cosy, with several more layers on top. I've got a long padded coat. I also wear a balaclava under a bobble hat. It took a couple of years to have the courage to wear it, but it does help to keep me warm. I wear merino wool shoes, from Allbirds with a self heating insole from the SRUK shop, and bamboo socks. And on my hands silver gloves inside possum gloves. Possum is the only fur you can wear with impunity, from New Zealand where they are an environmental menace. I did find a place online in Ireland which sells possum products. Unfortunately none of these thing are cheap, but at my age I just decided to spend the money. Oh, and in the evening indoors I have a heated foot warmer, with a blanket round my legs. That seems to keep me warm all over. I think maybe because I have warm blood returning up my legs instead of cold.A bit rambling but hope you'll find something from everyones answers which helps you.

Pam45 profile image
Pam45 in reply to bearman

Bearman, thank you so much for taking the trouble to give me advice. I have actually ordered some merino wool leggings and vests which are due to arrive any time now, so I am pleased that you recommend them. I am in the UK so they seemed to be reduced as we are moving into summer now, so probably the best time to buy. You're right, you just have to spend the money, no choice about it. Also use a heated foot warmer, much better than a hotwaterbottle as it gives your feet allround heat. Never heard of possum fur before, so I'll look into that. Many thanks again.😀

Hey Pam I'm sorry to hear about your diagnosis I have had Raynauds all my life my children also have it although one has it worse, runs in my Mums side of the family so I had a feeling it would happen. Mine is not so bad in warm weather but if there is a cold breeze I feel like it's winter, I also have Arthritis now so that doesn't help. I bought some electric socks as my eldest who gets it worst suffers from chill blains in cold weather they seem to help, they can't give medication due to age as under 18s aren't supposed to take the medication they usually prescribe. I don't know what to suggest for the face I usually wear a scarf but I sometimes struggle to breathe especially when I have Anxiety (wearing masks has been a fun experience 🙄) but it can also make you sweat which is a viscous circle as you know. I would definitely talk to your Doctor again ask if there is anything they can suggest to help with your face tingling, I will ask my relatives if they have any suggestions as I have been meaning to reach out for some advice myself. Sadly my Mum isn't with us so I can't ask her for advice but I'm glad I found this forum, I was looking for information about the Vaccine for people with Raynauds ect & got a link to some information which suggested this forum. Anyway I hope you can get the help you need but try not to let it stop you living your life, I know it is difficult especially when so many things keep pushing you down but you are stronger than you know just take it one day at a time 😊 if I get anymore info I will let you know. Take care & stay safe sending love, a virtual hug, positive thoughts & best wishes for the future 💛

Pam45 profile image
Pam45 in reply to Darcy87

Thank you for all your kind suggestions and for taking so much trouble to reply. It's great that you can be so positive. I have been on fluoxetine for just over 2 weeks now for stress and I think it might be beginning to help with that. I slept better last night. I am also using a website called headspace to learn to meditate. I have had an appointment with my GP today and he is referring me to a specialist regarding the Raynaud's. Another problem that is bothering me is that I get pins and needles alot in my hands, which I believe is linked to the Raynaud's. It helps if I exercise, but as I get sciatica in my leg there is only so much I can do.It's good to be able to share with other people how you are feeling in this forum as I think most people don't understand. Do you take medication for your anxiety?

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