Is anyone else with raynauds having t... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,329 members5,124 posts

Is anyone else with raynauds having these symptoms!!! They said I have primary!!

fairygoddess83 profile image
13 Replies

Freezing cold most of the time... All over the body apart from sweating under the arm pits and groin area!!!

Colour changes with pins & needle, numbness and pain

Muscular & and bone pain,

Tightness of skin and stiffness on hands

Red skin surface rash on kneck (looks like broken blood vessels)

Red itchy rash on legs, sometimes all over... (to much hesitamin)

Acid sick come up or feeling sick a lot

Dizziness, light headed.

Eyes effected by light.. natural light, white sky etc

Chest pains.. throught the rips / under light breast... Effect left shoulder and top arm..

The runs on and off for over 9 months .. plus black stools!


Sweat loads in the night..

If I exercise for more the five mins I ve over heated, I'm bright red like a tomatoe and pouring like a river of sweat!!!

My circulation to my lower legs go if I sit longer then five mins ... Turning my lower legs purple the pins& needles or if I stand for to long 5 mins I start gettin wobbly legs and pains...

Small white lumps on face about ten or more!!! (have no idea what they are)

Feeling tired and sleepy all the time.... Most days can't get up til late morning afternoon..

(Not good if you've got two kids)

1 minute Im awake and my brain is functioning properly the next minute Im laying down alseeping... Was helping my partner convert my dads van, carpeted the inside, made cabinet, bed

etc.. I've been busy working the next I sit down to gave a drink, then looked around and ended up sleep in the back of the van under the bed on top of all the tools... It' s like someone pulling the plug out of the computer..

Plus I have bipolar ...

Thanks for taking the time to read this.. don't suppose anyone is getting the same symptoms as me.. I ve really had enough now and just want to find something that will help..

Plus I'm really not looking forward to this winter too. :(


13 Replies
Bee346 profile image

Hello Fairygoddess......ask your GP if there is a possibility of CFS/ME going alongside your Raynauds There are to eliminate it if nothing else...B

VanessaJoanne profile image

I would ask to be checked for scleroderma

fairygoddess83 profile image

Thanks guys for your reply.... I keep going back to my go saying about these symptoms but nothing comes of it..:( will try again on my next visit.. plus I was thinking of giving them a print out of the R&S news letter too... X x

SandraMarie profile image

Sounds as though you may have CREST syndrome? I should put these suggestions to your GP, I would think he should refer you to your local hospital for tests to determine what is behind all these symptoms.

danacetz profile image

I hope you feel better , some of these symptoms could be peri-menopause.

beks169 profile image

Hi Fairygoddess83, am experiencing sum of wot you are - cold everywhere but sweaty armpits/ groin, looking like a beetroot when exercising, tired all time (not hard when you have a 19 MONTH OLD), tightness of skin and v dry on hands, especially the hip - which is being investigated @ moment (have had this 5 years and my new gp has been only one to take interest in me) am getting pelvic scan results tomorrow (was told i have small ovaries). Was diagnosed with Raynauds 10 years ago, but dry skin is getting alot worst i wondered about CREST, as have read about hip/joint pain which sounds familiar on here, was also asked @ scan if i was peri menapausal ???? No wonder your feeling down, i am too but because i have Depression (6 years on and off) (and Post Natal Depression) doc's seem to think it is that. Will let you know how i go on and let me know how u get on xx

ceegee profile image

if you are not getting anywhere with your own gp then make an appointment with another one in the practice. you might be suprised at a 2nd opinion

Maggs3petts profile image

I would get checked for Scleroderma too. I have most if not all your symptoms and I have Raynauds, Scleroderma, Fibromyalgia, Arthritis, Primary Biliary Cirrhosis, Depression, Migraine, Asthma, Sciatica, Sjogren's + Telganiectasis. Also suffer badly with reflux, hiatis hernia and insomnia. NOT saying you have all that just that you should asked your GP to check for Scleroderma and as, ceegee, states ask for a 2nd opinion. Regards, Mags

tinaparkii profile image

I also get ur syptoms. Apart from the falling asleep. But the rest I get. I am constantly tired and no energy but I also suffer heart failure so I no tiredness and jack of energy is down to that. But as for sweating its a joke. My top looks as tho its just been washed in the sink and not been spun. I even have a electric fan I constantly have on cold weather as well. But I have to try keep my left hand out of the way of it as triggers my raynauds. But can barely even use my arm it hurts so much. But its my left hand/arm and I am left handed so limits me to do anything

graygirl1 profile image

Hello Fairygoddess. So many things going on with you, I can only send you my best wishes. Some of your symptoms I recognise especially the fatigue, the cold one minute then sweating buckets the next. It takes me over two hours to change my bedding from start to finish, even need to sit to change the pillowcases. Mostly I have to wait until I get a visitor to do these things. Best not to try to do too much at once and remember that you need to rest and look after yourself.

My symptoms seem mild in comparison to yours but I do understand all you have to deal with, except the Bipolar. I hope you have supportive friends and family around you. I also hope you have a good medical team which is very important. It is hard to explain how you feel to others who do not have these problems, and often, I personally keep a lot of my suffering to myself for fear of sounding like a hypochondriac. I find a lot of support here on this forum. Hopefully you will also. Keep your chin up and let us know how you are getting on.

All the best,


Ali-Gounie profile image

I feel for everyone !!! I was diagnosed with primary Raynauds in my early twenties. As a child I suffered crippling chilblains and finger sores along with the cold.

For the last 8 weeks I have had flares of Hives that up to now have only been relieved with antihistamines and courses of steroids temporarily.

I have had blood tests which on my Raynauds show but have not had 1 for peri-menopause. I feel these symptoms match with menopause (I am 48) Before the blood tests I felt it was gluten allergy but since recording a food/mood diary I think it's more gluten intolerance which I have had for many years.

The hives, very dry skin along with bouts and cold sweats at any time of the day are driving me crazy !! Under the arms, around the breasts and neck and in the genital and groin area. So very uncomfortable.

I live mainly outside the UK in a warmer climates which helps my Raynauds and at the moment I am delayed to be able to return to the UK to see a rheumatologist. I do not take the Nifedine As I don't get on with it like I did at the beginning. I am taking CoEnzyme Q10 that another Raynauds sufferer feel helps in place of Nifedine.

I would love to hear from anyone.

Yellowbohemian profile image

Have you ever tried Bemer therapy, electromagnet waves which help to circulate blood to the smaller vessels ? Or so it claims. Has anyone tried it? Also PEMF therapy.

SylvieJ profile image

Hi Bee, yes have most of those symptoms but they come in waves. I think GPs are just not equipped to cope with all the symptoms we present. I think likewise, neither do Consulants, as they don't have a cure, they only have a limited amount of drugs they can offer. It really does suck and I think they don't realise that we do need most of all to understand why this is happening to us. That's why I find I learn more from you peeps on this hub and it helps me to get it into perspective and realise that I am not the only one. So a big thanks to everyone that posts here :) I have had every blood test under the sun, and still nothing shows up, apart from slightly low platelets which my Consultant has said isn't serious. Bee I hope you find ways to cope with what's going on. I am going back to having reflexology, and lymph drainage and hopefully when lockdown ends, I can find a Tai Chi class nearby. I don't know where about you are Bee but do you have a CTD nurse specialist? I find them more helpful than a GP.

Keep positive 🙂

You may also like...