Help!!!

HI there, I am new on here and came across this website on my search for more information about Raynaud's. The Dr's just handed me a generic printout and told me to read it. I'm only in my mid 's and face like others daily pains ect ect . . . I found a few years ago when I had acupuncter I found this helped with the cold hands and feet. That has now stopped. I don't feel like going to my Dr's as I have already been told there is nothing they can do or will do. I walk around work rubbing my hands together looking like a muppet it has effected my confidence! My main reason for this post is to find out if anyone on here has any tips that can possibly help me alleviate the agro and pain I get?

8 Replies

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  • Hi Cammeronuk2,I would suggest you ask your GP to refer you to a specialist to find out if there is any other condition which is related to your Raynaud's.There is help available whether you have primary Raynaud's or secondary Raynaud's.A rheumatologist would be able to do blood tests to find any underlying condition and treat accordingly.It could be your GP does not fully understand or has knowledge of conditions like scleroderma because it is so rare but Raynauds is a symptom along with many others of this.I have Nifedipine every 12 hours which opens up my blood vessels helping the blood flow to my extremities.This has helped me enormously.It is important to keep warm.Hope this has been of some help to you.Best wishes.

  • u took raynauds over 10 years ago and been on all the meds im on the new med opilon from my gp seems to work for the first month but started getting attacks again i was on nif but made me ill headaches and eye pain i use a hot water bottle and loads of clothing as i get an inner cold inside my body i get severe pain in joints fingers toes elbows i took reynauds after a bout of optical nuritis and could not see properly with severe leg cramps in left leg at one point they thought i had ms this proved negative thank goodness winter is a nightmare for me try the hot water bottle jeep the chin up

  • Are you a member of the Raynauds and Scleroderma Association? If not, do join. There are a lot of helpful articles in the Newsletter.

  • Do go back to your GP. Reading about the condition is just a start. Ask to be referred to a rheumatologist and do carry on treated yourself. Don't give up.

  • Hi there. I agree with Zenabb, go back to your GP and ask to be referred to the Specialist at your local hopsital's Rheumatololgy Dept. You may have other things going onand may need a few blood tests and so on. Your GP was wrong to tell you there is nothing that can be done for your condition. No wonder you feel so fed up.

    There are loads that can be done to help you once tests are done to determine your correct diagnosis. Raynaud's is often secondary to something else. When you start to receive the proper care you will feel much better. In the meantime keep as warm and comfortable as possible. Eat and drink well. Be good to yourself and please don't despair. Become a nuisance to your GP if you have to. He/she must listen and help you. Good luck!

    Graygirl1

  • I too would echo what graygirl1 and Zenabb have said - go back to your GP, be a nuisance if you have to be - it is a sad but true fact that sometimes in the nhs it is the one's who shout the loudest that get the treatment. I was about 13 when my GP diagnosed Raynaud's but that was all he did - I hated winter, hockey was hell and so were a lot of other things. It wasn't until 28 years later that I became really ill (after about 6 weeks on prozac - which they think was probably the trigger) with such bad pains in my legs, that my new GP (same age as me and also has Raynauds - think I got lucky!!) took blood tests and referred me to rheumatology. I was initially diagnosed with mixed connective tissue disease and got some medication for my Raynauds.

    Perhaps strangely it was a positive thing for me: for years I had suffered from depression & anxiety and all my other symptoms (muscle pains, tiredness, bouts of flu like symptoms) had been put down to that ... it was so good to know that it wasn't all in my head. And still is as a matter of fact. Like many others though, I do find that most people don't understand (and cannot grasp (a) the 'tiredness' as they seem to think it's just being tired in the same way that they get! and (b) the need to keep warm - I have learned to go to work with layers of clothes on - I also keep a fleece blanket there and sometimes take a mini hotwater bottle in when it's very cold (very comforting in the car on the way to work too!). I should say that I am also lucky with the people I work with now, they've become used to me always being cold and there is much more give and take on windows open / heating on than there used to be.

    So, good luck Cammeronuk2 - keep asking and pushing, you are entitled to a second opinion. GPs are generalists not specialists and cannot know everything.

  • Thank you all for you advice and support. I am currently moving Dr's so when that is al sorted I will be giving the Dr's some tough times. I try keep warm as i can adding base layers as per my old DR's suggestions but i have to agree with some of the symptoms that BarbJ mentions about being tired, having flu like symptoms and muscle pains which is what i get on a regular basis and have been to DR about but as they do just test you for being anaemic and having an over-active thyroid. THANK YOU ALL VERY MUCH !!!!!!!

  • Have got my fingers crossed for you Cammeronuk2 - keep in touch, I'm sure I speak for others, when I say please let me know how you go on with your new GP.

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