How old were you when you first exper... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How old were you when you first experienced Raynaud's symptoms?

199 Voters

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36 Replies
BevMyers profile image
BevMyers

Under 24?? That's incredible!! Just goes to prove we really need to target more of the RSA's marketing communications at the under 25's...

Steph profile image
Steph

I am very surprised that most were under 24 doctors told me it was rare to get it young, that it was usually older people who got it. I was 6

AshtonRains profile image
AshtonRains

I got diagnosed with Raynaud's at 15/16, and only just recently at the age of 20 have been diagnosed with Scleroderma.

LucieB profile image
LucieB

When we are young we probably think it is 'normal', i.e. the way it is, and not necessarily a condition. I know I did. It's only in my 20s that I wondered why I was getting these symptoms and someone mentioned Raynaud's and the RSA.

I have recently developed raynaud's. I'm 51 years old, and consider myself to be very phyisically active. I can't sleep, or stop worrying about the autoimmune issue that has yet to be diagnosed. My reumatologist is somewhat stumped. I have been reading about scleroderma and lean toward this, as far as my bloodwork goes. What should I do? *Thank you for any comments.

I was diagnosed with Raynaud's and Scleroderma at the age of 24. I didn't have a clue what Raynaud's was back then.

AdamS profile image
AdamS

I was about 15, the doctors did not explain what I could do to treat it. I always wanted to join the army, then Raynaud's ruined that for me.

LynnD profile image
LynnD

I was 51 when they told me i had Raynaud's and also Lupus. But i am so sorry to hear how young you all are to suffer.

I was 41 when I first started having Raynauds attacks. I was diagnosed the following year with Raynauds and Scleroderma

dordle profile image
dordle

I always suffered from cold 'dead' fingers as a child, especially outside playing, even with gloves on. I had a patch on my back in my early twenties, which no-one seemed bothered about. Four years ago, aged 54, I was diagnosed with Raynaud's & Scleroderma and told my patch was morphea, and that it was unusual to go on to develop scleroderma (limited).

wiscojoe profile image
wiscojoe

I had symptoms in my 20's that gradually got worse as years passed. Like others I had never heard of raynauds until a few years ago, I'm now 41. My symptoms have grown in severity alot since age 30. I grew up in northern Wisconsin where the winters are brutal and I was forced to give up hunting and ice fishing altogether as well as any other outside activity. I remember as a kid seeing my dad's hands doing the same thing and I'm sure there is a hereditary connection. I am hoping to move south in the near future in order to be able to spend more time outdoors. For me any temp below 60 degrees is trouble.

Cath5 profile image
Cath5

I've had Raynauds since I was born (well as far back as I can remember). Of course, I didnt know what it was and nor did family or doctors have any idea. Just had the reputation of "cold hands - warm heart". Always had bad circulation and numbness and funny coloured hands.

Pipsmum profile image
Pipsmum

I was around 50. My son was 16.

Sienna profile image
Sienna

I noticed that my hands were very sensitive to the cold and they turned almost purple when I was 26. I was diagnosed with raynauds and scleroderma at the age of 27. I can rememmber as a child I would always be the first one to go inside during the winter because I was so cold but I never showed any of the symptoms..white or blue fingers or any pain

Stacey13 profile image
Stacey13

I was 4 years old when it was spotted!! My parents noticed that my little fingers on both hands would go that bright white when there was a change in temperature. They went to the doctors and it was spotted immediately. I'm now 24. Lived with this for years although initially it was "just keep gloves on" - I'll say though, the fingers were about my only symptom for years. Around 18 or so it suddenly got a lot worse and I carry gloves everywhere I go and can't even pick up milk in the supermarket and hold it for long before I have an attack!

Lisa_Lovatt profile image
Lisa_Lovatt

I was diagnosed with Raynaud's when i was about 18 i get the pain mostly in my legs now and im the only 1 in my family that has it and aall my family members and some of my friends always ask me what it is so i always have to explain it to them.

Willow1604 profile image
Willow1604

ive just been diagnosed at 21

Ivana profile image
Ivana

I was diagnosed when I was 15, but had it since I was 8-9 years old.

13StarGirl profile image
13StarGirl

Always had cold fingers and toes from when I was little (now 19) my dad has also but he always put it down to the fact that poor circulation (and heart attacks) ran in the family, finally I now have an explanation.

I was 11, it happened in my PE lesson outside. The reactions from everyone was hilarious!! :)

joethecarer profile image
joethecarer

There had been hints of "white finger " for most of Spuff's adult life if she was really stressed by cold. But not in her youth. She had played hockey and had been a high board diver. But in 1997 , when she was 57 we went swimming off the Welsh coast in cold water. As she came out she realised she had chronic white finger and felt really ill from the cold. She never swam again, although we had spent the early part of that summer swimming everyday for weeks in Greece, south of Kalamata. The water was mainly warm with only cold bands. The deep cold of WElsh water was too much for her, although it didn't affect me.

Sarahbv profile image
Sarahbv

I was 14.

Seen GP, Ultrasound, Vascular, Trauma and Orthopaedics, Pain Clinic, Dermatology and 48 week wait for Rheumatologist. I'm 48 but have had it several years no one could identify it until I saw the Dermatologist who called in four other doctors to confirm. Still waiting to see a Rheumatologist :(

I have raynauds, SLE Lupus, and scleroderma. They were noticed in that order although I am unsure what produced the first symptoms. I was in my early forties when I first noticed the raynauds and shortly afterwards the other conditions began to flare as well.

alwaysfreezing profile image
alwaysfreezing

i got reynauds at 38 or 39

winifred profile image
winifred

My first memory of Raynauds was driving to work in the winter (cold steering wheel, hands raised) when i was 21. It was about 6 months after going on the pill and I often wonder if there is a connection. I developed CREST about the age of 50.

pamela2 profile image
pamela2

i was about 7 or 8, i thought it was "good" as i was like my dad,who had raynauds as well so i''ve had it approx 59 to 60 yrs........then it was just one finger that would go into spasm.... 2 of my 3 sons have it, one sister and a niece.......

jonathand profile image
jonathand

My experience is fairly typical i think...used to suffer from white finger when i was in my teens. Then it went away, and now in my late 40's its back, but worse!

Jeanette-17 profile image
Jeanette-17

I first noticed symptoms at about 12, though never went to a doctor about it until I was in my mid twenties when I needed a letter to say I had to avoid the cold at work. I spend a lot of time explaining what Raynaud's is and more then once when my fingers have been completely dead and white people have stepped back from me like I'm contagious or something!

julie5140 profile image
julie5140

I was in my teens

trekster22 profile image
trekster22

7 but it took until age 13 to get a diagnosis because no1 took me seriously. "Raynauds is a type of fox" people used to say

darkdreamer profile image
darkdreamer

I was 8 the first time my fingers went white and numb. I remember thinking my fingers would drop off.

p-c-1940 profile image
p-c-1940

I was around 50 years old when diagnosed with Raynaud's. Hands changed color occasionally then, that is all - very patriotic, red, white and blue. Almost 25 years later, fingertips are numb. Will see a doc very soon. I am a writer and have typed all my life. Probably 100 wpm most of the time. Have written books, too. This may be bad for Raynaud's but it is what I do.

p-c-1940 profile image
p-c-1940

I was in my early 50's when diagnosed. However, I have been sensitive to cold all of my life. Maybe even born with Raynaud's. As I age, it is more noticeable.

gindy profile image
gindy

I was in my early teens when diagnosed.

Dorothee profile image
Dorothee

My first noticeable symptoms were in midsummer wearing a Summerdress. It was a lovely day

The wind was there making my hands go completely white. They sent me to blood department

In hospital. They gave me gloves with battery. Man size. From there I found charcoal you put

In your gloves.