raynauds help..

[animals6]

hi i would just like to know how others deal with raynauds? i have only had it for a year but it has put a big downer on my life. i am unable to do many things that i used to love, such as horse riding. i am only a student and at school its hard to deal with. people always ask me y my fingers are curled onto one anothe and why i have problems walking etc. my teachers dont accept the fact i have and cause alot of trouble. which puts stress on my exspecial through exam, which i am sometimes unable to do/finish due to my raynauds.through out the year it has gotten alot lot worse. it has affected my knees back ect, sometimes im in so much pain i cant sleep nd the pain causes me to be sick. just wondered if any of you thought that it could be something other than raynauds. at a young age i want to get it sorter, as im affraid it will cause me great pain and difficulties in the future. many thanks animals6

[overnighthearingloss]

It does sound as if your GP should be referring you to see a specialist. If he/she will not it might be worth changing GP

[Anteater]

Hello, how old are you?

It sound as if you have more than Raynauds, I think you should go back to your GP and ask him to refer to to a Rheumatologist. If you live in London, The Royal Free Hospital is a centre of excellence for Raynaus and other related conditions.

I have Systemic Scleroderma, Raynauds and other auto immune conditions. Raynauds is sometimes secondary to Scleroderma but not always.

I am 56 this month and my love is horse riding and I still ride. I find it extremely difficult in all seaons because of the pain, ulcers and severe fatique. I think once you have had a proper consultation with test etc it may help you to control it a bit more.

Also, you can always find an establishment i.e. riding for the disabled which may be able to help you.

Please also contact the Raynauds and Scleroderma Association who have a wealth of knowledge and leaflets that they can send you.

Good luck and please let us know how you get on.

[ShellyShell]

Please start with a rheumatologist referral from your internest in getting your bloodwork specifically testing for things like anti nuclear DNA. It took 10 months from onset of clinical symptoms until the labs showed a change. I happen to have systemic scheroderma. It took that long and being very persistant in convincing my doctor I wasn't crazy. I knew I was not well. Once I found out, I received care from a rheumatologist specializing in schleroderma. I feel sooo much better. Working out also helps. Take good care!

[tall-tim]

I'm sorry to hear of your afflictions. You must get a doctor who is prepared to work for you. If necessary ask him/her whether there are any colleagues in the practice who have experience of auto-immune and/or rheumatoid disease. If nobody has then you may want to register with another practice.

[Noddy32]

Hi

I am a fellow sufferer,albeit milder than your condition

My Doctor will not accept I have Raynaud's - because my fingers do not turn blue !

You have a disability, but an almost invisible one

Teachers, colleagues etc would accept that a person in a wheelchair is disabled

because that is VISIBLE and OBVIOUS

Because your disability s is hidden and not obvious you are a victim of discrimination

and possibly bullying

I suggest that you politely point this out - in your own words - to everyone

and stick up for yourself

If need be use the "bullying"/"discrimination" words and approach

Most schools have a policy on these topics

Find out

Make a polite complaint

Stick up for yourself

and by doing so, you will be helping others with "less obvious" disabilities

I hope part of this helps you, to help yourself, and hopefully others

[pamela2]

i've had raynauds for 50+ years,doc and rheumy dont want to know,maybe its because i told them what i have ?..My grandmother,father,2 out of 3 sisters and 2 of my sons have it,also various other relatives,so its not a case of i dont know what i'm talking about, its got a lot worse in the last few years but still nothing more done to help,i was thinking of a private visit to see smone at the royal free.....oh yes one doc said go home and keep warm mmmm not very helpful..

[overnighthearingloss]

Especially at the current time GPs are about to take control of health budgets. It will come from the GPs coffers for you to be referred to a specialist. They may be reluctant to do that especially if they have little understanding of the condition themselves.

This is not a dig at GPs but not all doctors or even hospitals have an understanding of many autoimmune conditions. If you can be referred to a specialist centre such as Royal Free you will be seen by some of the best in the field. I also have lupus and much of my care is at St Thomas but they have a link with Royal Free for certain patients conditions.

[animals6 in reply to overnighthearingloss]

okay thanks im nearly 16..that is why it concerns me..i do have one really good doctor down rhw surgey..she amazing!! however she has to fight like hell just tp get a doctor to see me down in ipswich hospital, they arent really bothed. i took a day of school to go and see them,, they sent me home wih theanswer "keep warm" :O..and as your onlt a teen girl its problem just "hormones try not to get stressed..its not hormones though im really not that kind of girl who gets hormonal nor do i strees, im really easy go with it kind of person. im difintally going back to the doctors to try nd onvince them, that i need help, they did take some blood test off me and had it sent away but everythong looked fine, so they just said it was raynauds...thanks again guys

[MikefromsouthNZ]

Hi there, I'm a horse lover too...My guys called Volace, He's 16.2 hands, a bay gelding with a white blaze and I love riding him.. It takes 3 people to get me up and onto the saddle, but he knows to be careful, as I think all horses know when someone with an illness or disability are riding them, as they seem to stay very calm...

Tell me, is your pain more from your muscles or from your hands and feet.? Why I ask is I also have a type of arthritis called Fibromyalgia that makes my muscles very painful, plus it makes me very tired. I'm not a Dr but my guess is you may have Fibromyalgia too.. It's just you say your knees and back ect, as that's where my Fibromyalgia effects me most and my neck gets extremely painful too.. But my Raynaud's is painful with fingers, hands and feet and they get really cold, and often turn different colours, like purple and sometimes blue.. So can you see the slight differences between Fibromyalgia and Raynaud's now..?

Don't give up on your love of horses as I still ride, it's just now with other disabled people.. They gave me special reins to use, kinda fat and soft to hold. So now using these reins plus a special saddle, I'm back horse riding again and I love it.. . Although it can often be painful while riding, I always wrap up well plus I wear warm gloves, as they seem to help my hands from hurting.. I also find riding helps me feel better inside, and not so mixed up in my head and bad feelings...

Please don't give-up your dreams as they keep us going on the tough days..