help please!

[littlemissshy]

i have raynauds, but i have a lot of pain alongside the usual pain which accompanies the colour changes in my hands and feet. these pais include sharp pains shooting through my arms, legs, wrists and right shoulder which sometime last a few seconds or a few hours, is this normal? also when i get out of the shower my legs are bright red, speckledy and very painful, is this normal? i have had raynauds for nearly 3 years but this has all only just started... please help!

[zenabb]

It is quite possible, but if I was you I would go to see the GP. Best wishes.

[living-the-dream-ssc-ray]

ooo that sounds very painful and classic raynauds ! are you on any medication for it ? I would definitely go and see your GP as the more of the pain attacks you have, not only are they most unpleasant, but you also increase your chances of ulcers forming - which you really do not want to have, as they are so disabilitating as well as painful and take ages to heal.

I have not been able to have a shower for years, as I have diffuse scleroderma with raynauds, and a shower dehydrates my skin. I start my day with my mermaid routine - bathing in Oilatum plus in quite a warm bath as this gives me a boost to get moving for the day, as well as moisturising my skin, and eases some of the pain. I have to be very careful with the temperature change when getting out the bath, that it isnt too cold, otherwise I will have an attack straight away, so the heating is always on !

and then for the rest of the day, I am dressed like an eskimo and Ugg advert ! I have a microwaveable hand warmer which is my bbf for most of the year !

have you checked out the raynauds and scleroderma association's website on raynauds.org.uk ? there is some great information there as well as leaflets which you can take into your GP surgery.

Keep warm, prevention is better than cure, as after the ulcer stage comes the amputation stage if the vessels have become so damaged that they no longer allow a blood supply - worst case scenario ! get those tog socks and gloves on x

[Skwiglee in reply to living-the-dream-ssc-ray]

I'm walking proof, that ulcers do not necessarily lead to amputation. Aromatology 'cured' me of ulcers. You just need to be prepared to think outside the box. Also not take everything that the 'specialists' say as gospel. After all, it's not their fingers that will be lopped off!

[living-the-dream-ssc-ray in reply to Skwiglee]

Me too Skwiglee ! I have very scarred finger tips from where the ulcers have been and eventually healed so thank goodness for no amputations ! My microwaveable handwarmer and Ugg gloves are my constant accessories now as no way do I want any more ulcers ! x

[overnighthearingloss in reply to Skwiglee]

My experience with ulcers is that they can be cured. I have had a series of them since Christmas and now hopefully all traces will soon be gone.

Your poor circulation is what allows them to stay put for so long. Similarly if they get infected the poor circulation makes the bodies healing systems ineffective.

You have to do all you can to help by keeping them as clean as possible and keeping your hands as warm as possible to aid whatever circulation there is.

The intense pain you get is usually infection related. Regular finger baths to keep them clean is my method of attack. Using rubber gloves for toilet functions helps to prevent exacerbating the situation further.

It wont stop you getting more in the future though.

[littlemissshy in reply to living-the-dream-ssc-ray]

Thanks a lot, its really helpful, i might take some leaflets in to give so people become more aware. I have seen my doctor and she is getting me an appointment with the rheumatologist in the hospital, she said i might get tablets but i will take anything to take the pain away!! Haha yes i walk round with gloves glued to my hands!!

[Skwiglee]

Hiya!

Are you on blood pressure tablets? As these widen the veins to allow the blood to flow more freely. If not take a trip to your GP, or you may need the tablets changing for something more suitable. I get what I can only describe as 'paper cuts' in my hands. This is where the blood is trying to flow thru constricted vessels. So on top of the 2 BP tablets, I also take Nature's Best - ginkgo, cinnamon and ginger. These are mega strong and aid your circulation naturally. With no side effects Good luck

[littlemissshy in reply to Skwiglee]

No, im not on any 'set' meds, but i just came from the doctors and she basically said ill get a letter when i can see the rheumatologist in the hospital in abergavenny. When im in deep pain i take ibprofen or paracetomol, thanks!!

[Hidden]

Hi, I have that almost 99% of the time so totally sympathise. Not much seems to work, have had so many different types of medication from the Pain Clinic and GP and still nothing. So sorry

[littlemissshy]

Thanks guys,no im not on any medication but im actually sat outside the doctors now! Wish me luck, appointments in half hour, hopefully they will figure it out!! Thanks for the support!!

[littlemissshy]

Thanks guys,no im not on any medication but im actually sat outside the doctors now! Wish me luck, appointments in half hour, hopefully they will figure it out!! Thanks for the support!!

[living-the-dream-ssc-ray]

Hi how did it go with your dr ? x

[littlemissshy]

hi, it went fine thankyou! she is referring me to the rheumatologist in neville hall, but i will get a letter when my appointment is. the rheumatologist might give me some meds, but he/she is also going to check my dr hasnt missed anything. so basically in the meantime i have to keep warm, keep a diary of when the attacks and other stuff happens and take pictures for proof....whohoo! how are you today? where do you live anyway? (might seem random but i just wondered worldwise!) thanks for asking! x

[living-the-dream-ssc-ray in reply to littlemissshy]

Ah thats good that you are getting a good support system in place !

I am in southport just up the coast from you ! I have a wonderful medical team behind me, including my local hospital, the wonderful wizard at the Royal Free (Prof Denton and co), my GP surgery, and the local pharmacy and health shop ! this gives me great confidence whilst on my yellow brick road-path return to wellness !

Have you ordered some info packs from the raynauds and scleroderma association raynauds.org.uk to take to your appointments? There are leaflets which have been specifically written for the medical community as well as leaflets for patients / non-patients. I did this a few weeks ago, on the slant that the info could help other patients, and they were received really well. As well as, the more people that join the Association - not only more people for raising awareness, but more funds for finding that so needed cure.

I have resigned myself to accepting that although the sun is out i wont be venturing out today as my knee is demanding special attention ! So I am listening to some tunes which I like and looking forward to watching The Voice later. yep thats me - Living the dream x

[graygirl1]

Hi littlemissshy. Your doctor has done the right thing and the Rheumatologist will get to the bottom of your symptoms and offer you the right treatment. In the meantime, take good care and keep as warm as possible. Make sure your bathroom is always nice and warm at bathtime but try not to soak your skin too much under the shower or in the bath. May I suggest some medicated bath oil like Oilatum instead of soap for bathing? Be sure also to use copious amounts of moisturiser especially at bed time. Any of the essential oils can be used. My favourite is olive oil for the whole body. Put on a pair of cotton socks and into a nice warm bed with a nice hot cup your favourite nightcap.

Hope you get an appointment soon. Best wishes.

Graygirl1

[littlemissshy in reply to graygirl1]

Hi graygirl1! Yes i agree, im glad she is sending me to a proffessional to make sure. A week ago, i was walking around with gloves on when i needed them, but now i use them all of the time! Luckily my feet havent played up yet- i have raynauds in my feet too-! Thanks for the advice! I will convince my mum or dad to buy me some the sweetest thing happened today, basically a student teacher whom i havent know for long has been the most supportive adult in my school, and has supported me from the start, and then today, about 5-10 mins before the end of the lesson, he stopped teaching for a few minutes, waited for the class to get slightly distracted and then mouthed across the room 'are you ok?' Obviously i replied yes-even though i was in a lot of pain, and then at the end of the lesson he asked me again-in all fairness he is great!he supports me, and he was the one who suggested that i get a doctors note. Thanks for your support! How are you? Hugs to you too,

Littlemissshy

[graygirl1]

The pleasure's all mine to know you have a great friend and your mum to support you. Thank you for taking the time to let us know how you are. People are very kind when push comes to shove but it's hard to explain about Raynaud's to anyone who's not experienced it. Now that you have found this forum you will get even more support. Thanks for enquiring after me. My hands and feet are cold but I am in good spirits and looking forward to the weekend. I have nothing special planned but I am contented just to be alive. I have a five year old Godson who's in the habit of paying me surprise visits when I least expect him so fingers crossed. He's my little ray of sunshine. I'm also hoping for some sunshine. We need some warmth now, don't we?

Enjoy the weekend, make sure to spoil yourself with a little treat of some kind. You deserve it.

This goes for all the "Raynaud's family"

[littlemissshy]

Yes, its hard for them to understand, but ill teach my friends haha yes i am in the same position, cold hands and feet, but my friend is coming to stay tomorrow, unfortunately one who doednt understand as much...aw how old?? Yes we do, just a question, what part of the world are you from? You too, soon itll be over so relax take care xx

[alwaysfreezing]

i get very sore itchy skin like small dry spots on legs always sore at night i think it comes with having the condition good luck

[littlemissshy]

Ok, at least its not anything else! Thanks good luck to you too!!