miss lynn yates

[raynaulds]

i found out 6 years ago that id got raynaulds very bad , now ive got three problems now two fingers all the nerves are dead,have to wear black gloves all the time not nice but iam still wprking and strugling with it, anyone else out there like me please help

[raynaulds]

please excuse my writing as ive missed some words out two fingers on my right hand have gone dead

[Struth]

Are you having treatment Lyn? I had numb fingers and some nerves had died and gangene had set in. After treatment however, the nerves slowly regrew and feeling returned. I did lose some finger tips but there was some improvement. I know the pain it involves and wore the black circulation gloves myself (still do on really cold days). This condition makes you too aware of how much we use our fingers for everything. I have infusions which stop the damage and open arteries again. All the best Lyn.

[nannysue1950 in reply to Struth]

Please, what are black circulation gloves and can they be bought or are they on prescription?

[raynaulds in reply to nannysue1950]

no you cant buy them on the nhs i wish to god they did ia only wearing one on my right which is the worst the gloes are beautiful soft my hand wont wear any orther,so iam afriad you are going to have to fought loads of money

[raynaulds in reply to nannysue1950]

no u have to buy them fron america special gloves made of silk beautiful to wear sot but expensives £34

[raynaulds in reply to Struth]

iam almost crying here reading your stories my heart goes out to you god help that i dont get gangrene ive seen pictures anough to knock you sick my two little fingers on my right hand are dead i havepain all day and night not slept for three months sleep in the car and just smoke away is ther any chance you could send a picture of your hand and finers please iam beeging i really would like to see what its done to youur life,i drive a us for a family in stockport les knows all about my condition never bothered.how old are you and do you work ,are u on dla for life as i am,ive ost all my grip one night at work,my hand just wet y thumb and second fingers cant pick up

[raynaulds in reply to Struth]

i did have that treatment infusion and might be going back on it,my blood is too high and drs putting me on 24monitor ortherwise they cant operate me

[raynaulds in reply to raynaulds]

what does 24 hour monitor mean they have never offered me anything tyhey have told me that ive got to wear this glove for life

[Struth]

Hi, they are a thin glove available from Far Infrared Health FarInfraredHealth.com. They are expensive but I find they help.

[nannysue1950 in reply to Struth]

Thanks very much - will take a look at the website

[raynaulds in reply to nannysue1950]

what are you looking for is it the gloves go onto infred red gloves and dont e shock when you see the price ps dont for god sack sew them up because the are silk and ive tried but you wont get them back on iam serious

[raynaulds in reply to raynaulds]

dead right dont sew them up ive had some sewn

[raynaulds in reply to nannysue1950]

you can get white ones or black ones good luck as u will need it very dear

[raynaulds in reply to Struth]

hi ther yes i know about and you what i cant afford anymore £ 35.00 a pair iam notmmae of money iam wearing one now i cant work without it thats owbad my two fingers are so you can imigine what its like for me ,i v got fives bears all worn out,they havent cured my hand so my nerves are in shreds

[raynaulds in reply to raynaulds]

who is this i will reply back

[raynaulds in reply to Struth]

yes to your question the are very thin but supple and feel good but i cant afford to buy any more as i not working this week and at the moment other things aren cropping upn by the way go onto he primrose site and you will find some ther and type in patra silk and you will see some more which are slightly cheaperive just ordered one pair of smal and medium as ive got a deformed knuckle as well,ive got three conditions o my hand dontn get the ojes with elastic wrist

[raynaulds in reply to raynaulds]

ive been there primrose dont bother and patr ive beeen on every site there is to find gloves to help me

[raynaulds in reply to Struth]

yes they are well they help my little finger which is useless without the glove i couldnt do anything i need help

[creditcrunchie]

Hi Lyn

I am glad you found your way to this site. I have Raynauds and limited cutaneous systemic Sclerderma. I have found the people who blog on this site to be informative helpful and kind so fire away and ask your questions as someone will try and help you find out information which may help. What sort of treatment are you receiving - do you have daily medication? Do you go for Iloprost? Do you have a rhumatologist?

Take care - keep positive as so many many people who use this site are.

[raynaulds in reply to creditcrunchie]

what is the point ive had to put up with condition for 13 years cant go out people stare at me theyy think ivegot disease my little finger is covered or i couldnt do anything i cant shop cant wash cut pull nothing

[raynaulds]

no iam not on any medicines as i cant swollow without choking so i take beechams powders not supposed to but my bloodpressure is way too high othey cant operate til it goes down and it wont until things ease up at mums anyway i informedthe drs thsmorning and told him wher i think i got ithe had a shock cause i never told him where i was working at hte time so ive got rauynaulds for life but my two wnd fingers are dead and they are goin to try and cut the nerves,i wish i coul meet you but i an drive

[raynaulds]

to all the sufferers of raynaulds downdysome please get help ive been like this for 9 months the raynauls i ca cope with in cold weather not the nerves the hurt day in day out,iam in agony now

[queen]

Hi Lynn have you tried illoprost infusion

[raynaulds in reply to queen]

no what i have had was special liquid kept in freezer and pumped into my blood system dont know the name but if it was to high my hand would go re

[raynaulds in reply to queen]

yes i have for four years it did work but then another condition oovertook my caalpol tunnel in both hands wrists and elbow i might aas well die

[jjsa55 in reply to raynaulds]

why are you saying you might as well die, have you had any operations to help with the pain, what pain killers do you take.

[foxglove]

Hi lynn ,

The raynauds and scleroderma assosiation sell "silver" gloves at around £8 a pair I find these very helpful.

Cheers

[raynaulds in reply to foxglove]

i ve had every glove known and the silver ones but my hands are too bad,

according to my friend its 12 years since i went in for the infusion

[raynaulds in reply to foxglove]

iam still driving but struggling to cope as when i take the glove off i moan so much with pian

[raynaulds in reply to foxglove]

ive been there as well u dont have to tell me ive done loads of research and they wont help i ve got to livelike this well i cant

[raynaulds]

i dont want to upset the members but i feel for all of them i cant cope now with ithis condition my is too bad ive got have toop

[kjane]

Hi, my name is Karen and I live in Omaha, Nebraska in America. I have had Scleroderma w/Raynaud's for 22 years now and I understand your pain and suffering right now. It can be so painful and debilitating. I have had 4 Digital Sympathectomies (micro surgery) to strip the nerve endings in the finger tips and they have been very successful. I have 2 fingers that still tend to not cooperate though. I just had a very bad ulcer on my first finger on my right hand that turned to gangrene. I have used Revatio (know as Viagra and Sildenafil) several times before with fantastic success. It is a vasodialtor so it opens the blood flow better. I have used it 3 different times now and each time it has cured the ulcer with out having to have amputation yet. I have friends in my support group who are on it continuously and have fantastic relief.

It is an expensive drug and I do not know how your medical system works, but sometime the manufacturer will help with the cost. I had a finger that was "dead" per the doctors and that was the first time I tried Revatio. Within 2 hours I had tingling in my finger and it was turning pink and warm again. I know I can't promise the same reaction for you, but it would definitely be worth a try if your MD would order it for you. I took 20mg-3 times a day and my most recent ulcer and the gangrene were gone in 30 days. Everybody reacts differently to drugs, but I had no side effects. I think you mentioned trouble swallowing (which I also have) and I crush the pills I cannot swallow and put it in applesauce. I hope this information helps a little and that your MD with work with you on it. Do you have a Rheumatologist yet? They would know about the Revatio. Please stay strong and hang in there. I understand how devastating this can be and how very, very painful. Know that there are many of us who know what you are going through and always here to help and support. Good luck and I hope you start feeling better soon.