Have I got Raynauds🤔: I'm a 55y.o... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Have I got Raynauds🤔

sinbad100 profile image
sinbad100
•18 Replies

I'm a 55y.o. male in Scotland. Over the last couple of weeks I've noticed a finger going white and pins & needles. It's now developing to most fingers and sometimes they go blue.It always happens when I get home from work at around 5.30pm and lasts for about an hour. The drive is only 25 mins and due to the cold weather just now I always wear gloves. My trip to work in the morning is fine even though it's probably colder then.

I work in a Chemists and showed a photo to the pharmacist and he immediately suggested Raynauds.

I should add that I have CLL (chronic lymphocytic leukaemia) but not on any treatment as I'm very early on in my journey with it (4.5 yrs).

I presume I have Raynauds, but would this be because my immune system is compromised and so am I more susceptible to it?

Should I be concerned and see a GP - I don't want to bother the under-pressure NHS at this time if it's a trivial matter. Then again if I should be doing something early on with Raynauds then I hope you good folks might give me some advice.

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sinbad100 profile image
sinbad100
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18 Replies
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andy7551 profile image
andy7551

Definitely contact your GP about it, and if you are under a consultant for the Leukaemia then I would mention it to them as well, via the secretary or they may have a helpline. The gloves won't be enough to stop your fingers turning white - make sure you are really warm before leaving work, then for the walk to your car wear extra layers and hat/gloves, crank the heating in the car and only turn it down/remove layers when the car is warmed up. This is what I do and it keeps my Raynauds in check, it was a real learning curve though.

sinbad100 profile image
sinbad100 in reply to andy7551

Thanks Andy, I'll follow that advice. Mulling this Raynauds over some more it didn't click before, but for years my hands have always been cold and often my feet too. I just put it down to me being me. Maybe it's been there for a while, but just manifesting itself in my fingers now.

Citrinesun profile image
Citrinesun

Yes definitely looking like raynuad's to me ☹️ GP or your consultant should refer you to rheumatology, you may get priority due to your condition - the raynuad's could be secondary to that. I don't know -

Andy has already given some fab advice - I would suggest getting one of these pocket sized rechargeable hand warmers off Amazon - obviously you cant drive holding them but they do help to warm the hands,

I have been keeping mine 'handy'. 😂 With our recent dip in temperature, attacks are more frequent..

Also when you get to work, run your hands 'gently' under warm - not hot water, to slowly bring the circulation back, or if they have those hand dryers that blow warm air they are quite good.

sinbad100 profile image
sinbad100 in reply to Citrinesun

Thanks for the helpful advice. I'll look into those hand warmers.

Buttsy profile image
Buttsy

I think you need to definitely get some advice this is one of my symptoms, Raynards can be primary or secondary which means it could be a sign of another underlying problem. Good luck

AutumnJ profile image
AutumnJ

Hi,

I had a really painful thumb (2018) which then changed colour a couple of times. I went to GP who did blood tests and I was then diagnosed with CLL. I have not as yet needed treatment for either, but I think that there is a connection between CLL and autoimmune conditions. I would definitely contact both GP and your consultant.

sinbad100 profile image
sinbad100 in reply to AutumnJ

Same time as me then on the CLL journey. I know we are more prone to infections etc, given our weakened immune systems, but this Raynauds is new to me!

AutumnJ profile image
AutumnJ

Your Raynauds seems to be a bit worse than mine, I still mainly just get pain in my fingers when it is cold. We also definitely need to be careful with infections, I always get my vaccinations. I have not been getting any infections, despite my immunoglobulins being very low. I hope you are infection free also

Please follow up with her health provider. One of the best things that work for me is turning on my car's seat warming function. It warms my entire body fast. In the meantime before speaking with your doctor, try this along with wearing gloves. Happy travels!

OldTed60 profile image
OldTed60

This certainly looks like classic Raynaud’s to me. Mine only started suddenly at end of an early menopause. But like you I’d often suffered cold feet and hands - also ears and hands - since childhood and we don’t see these much so I only became aware of this quite recently due to trying to work out cause of facial pain when I’ve been out in cold.

I already had hypothyroid and Rheumatoid Arthritis when mine started so I mentioned it to my rheumatologist but he seemed uninterested - just shrugged. It was my GP who took it more seriously and put me on nifedipine. After a while I had to stop as it gave me side effects but I’m on infusions now - which help.

If primary Raynaud’s then it’s relatively benign. But if it’s secondary to an autoimmune disease then it damages your connective tissue so it’s important to tell your GP or consultant so they can run tests and decide. I did find that mine only started when I was on an immunesuppressant so your theory about it relating to your CLL could well be right.

sinbad100 profile image
sinbad100 in reply to OldTed60

Thanks for the info. I'll definitely get on to my GP - if I can get through!!

OldTed60 profile image
OldTed60 in reply to sinbad100

Is there an online general health consult system like my practice have - where you can add a photo and explain your concerns? This system works really well for me - they usually either email me via admin or make a phone consult - or even get me in.

sinbad100 profile image
sinbad100 in reply to OldTed60

They did have a similar service, but withdrew it about 12 months ago!

OldTed60 profile image
OldTed60 in reply to sinbad100

oh that’s not so good. I’m sorry and good luck with following this up.

ceceliac10 profile image
ceceliac10

Hi there definitely looks like Ranauld I suffer from the same my one is so bad I have iiloprost which has help immensely. You should really speak to your GP about it. Wishing you all the best

sinbad100 profile image
sinbad100

As an update, I had a telephone consult with the GP who referred me to Rheumatology Dept and appointment for late Feb came through within a week. Thought I'd be battling for an appointment, but must say am well impressed. Keeping those white, tingling fingers crossed for some relief😀

OldTed60 profile image
OldTed60 in reply to sinbad100

hi - how did it go with the rheumatologist last month?

sinbad100 profile image
sinbad100 in reply to OldTed60

Specialist confirms it is Reynauds and indications are that it is primary rather than secondary. Suggested some actions to relieve the symptoms which include diet, gloves, etc which are probably well signposted on this site and Mr Google anyway. She did refer me to another specialist who will microscopically look at the nerve endings on my fingers to assess further. Overall, well impressed with the service....gawd bless the NHS😀

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