I was 27. (47 now) And the very tips of a finger or 2 would get white in freezer section of grocery store. Without touching anything. A year later in the tub, with NO pain, the bottom of my feet looked like purple ink. I was diagnosed with RP and sent without any discussion. Wondering HOW OLD were all of you that first day/week you knew something was off?
20 yrs later- constant hand pain More foot pain etc etc
Have NOT developed ulcers yet
I was 24yrs now 51....has gotten a lot worse as I have aged
Was on Nifedipin for yrs but stopped working ....
Tried Beta blockers but made it worse so live with it amongst other conditions
When you were 24 what were your symptoms? When did you start meds? When you say they stopped working, what do you mean?
Do you smoke or did you?
Hope you don’t mind my questions!
Don’t have to answer if you don’t want to.
Hi again....hands feet started going numb blue & skin cracking. ..
Nifedipin stopped about 4yrs later they had stop working ....
Long story short since then I have been diagnosed with
Carpel tunnel syndrome - operation to relieve median nerve didn't work
Sub Arachnoid cyst
M. E
Urge /stress incontinence
Depression/anxiety
Fibromyalgia
Cervical discs plus stenois
Osteoarthritis plus Osteoporosis
Left hip / hip replacement once neck has been stabilised
A multitude of issues ....the Raynards is a glitch compared to the others I carry round every day 😉
Got to have a sense of humour or aquire one 😊
I was around 48, am 67 now and its definitely got worse. Never offered any treatment, just advised to keep hands and feet warm. Not sure whether it's secondary or primary as never had it investigated. Have fibro and underactive thyroid.
I can't remember not having Raynauds (I'm 54). I recall being about 7 years old with frozen feet waiting for the school bus, even jumping up or running on the spot would not help. Not sure if it was Raynauds but certainly a circulation issue. First time I noticed colour changes in hands was early teens. I had to give up playing the piano as the room it was in was so cold in winter I could not practice properly and also I used to ride horses a lot which was a nightmare in winter with cold feet (numb until you dismount and then OOOOOWWWW) and hands too cold even with gloves on in winter.
Hi you don't have to touch anything it's just a reaction to something the body thinks/feels.
I was similar age to you when mine started.
I was pregnant with my daughter 27 years now 60. She has developed it at 25.
I was about 40 when I started with Raynauds....no medication,, and mostly an inconvenience rather than anything else.When I was about 60 my hands got very swollen and stiff, and about a year later I was diagnosed with limited systemic sclerosis and secondary Raynaud's.
Like Cowhide I cannot remember a time without white cold hands or feet. It was just a normal part of my childhood.
I was 50 and was quickly diagnosed with limited cutaneous scleroderma. The RP got really bad very fast. All my fingernails dropped off in sequence as each finger started to react to the cold. I'm much better now, on Tadanafil and Amlodipine daily. I still get lots of bad RP, but not the awful pain when the blood returns. I often have purple dusky fingers all the time but they recover overnight. I hope everyone gets help from sympathetic health care medics.
I'm a 62 yo male from Italy.While driving to work in Nov. 2011 at age 54,I noticed that the upper portions of my fingers were very pale.When I got home later in the day I went to type the words "pale finger tips" on Google and suddenly understood where the problem lay.Fortunately, like many males, my condition as compared to that of most females is rather mild, but nonetheless I also must come to terms with the disease and have a medical check up once a year.Only had digital ulcers the first two years.I try and avoid the cold as much as possible.If the temp. dips below 5° or 6 ° C I stay indoors.External signs are puffy fingers and knees.Every now and then my right knee tends to buckle when I walk.I take 30 mg of adalat daily.As said I've got limited scleroderma in a benign form and I can say that thank God I can lead an ordinary life-style.All the best to you and the followers of this forum.
Very interesting and I appreciate your feedback. I hope you continue to manage your symptoms
Do you mind if I ask if you smoke?
Absolutely not and apart from that no coffee and no meat.Once again keep well and stay tuned to the forum.
I was a teenager when I first started noticing the cold, about 13. Not knowing what it was, only diagnosed as an adult, very late on. I just put up with cold, numb, hands and feet. My feet used to be worse, I cried with the pain, my toes would go numb and I couldn't walk properly. I learned to by bigger sized boots and layering of socks but can't be too restrictive or Iose the feeling.
As iv'e got older my hands have got worse, summer or winter. I get chilblains regularly and infections around my fingernails. Any exposure to a slight change in temperate will cause an attack. I have taken Nifedipin on occasions but I don't like the side effects, so only take them when I can't cope anymore. My doctors have never been any help, saying there are no alternatives.
Miserable, but have learned to live with it, over 30yrs, now i'm 47.
Hi there, for me it started around my mid 30s (now in late 30s) with only a fingertip or two getting white... I didn’t even pay much attention initially until it hit me hard with blue fingers and even an ulcer... was shortly after diagnosed with mild limited systemic sclerosis. I used nifedipine in the 1st year only as didn’t see a big difference with or without it. Now I try to take supplements (ginkgo etc) during the cold months and try to keep my core temperature up. Never been a smoker ... how har your RP progressed over the years? I wish I could do something to keep things under control for the long term...
This is interesting because it seems like your symptoms came on later in life to so rapidly get an ulcer. But then you were diagnosed with SS.
I’m sorry for your suffering.
For me the progression is underlying deep deep aching pain in hands especially. And recently fingers turning blue with one not correcting until 20 hrs later.
They will not refer me to a Rhuematologist at this point. Because they dont know nor understand these diseases apparently.
I was a child when I first experience raynauds. I’m now 53. My 3 children are the same and they’ve all experienced raynauds from a young age. Fortunately it’s not progressed to anything else, but mine has definitely got worse as I’ve got older.
From a very early age of infant school, I’ve always felt the cold in feet and hands. Feet mainly. I remember standing in the playground too cold to move and a teacher telling me to run around and get warm. But I couldn’t, I was too cold. So I’d be about 6 years old. Later when I was about 14 years, I got small spots on my chin area, sort of white head. I still have the marks to this day and I seem to collect other tiny raised spots on face. Not visible to others, they come to nothing but don’t go away. I am now 69 yrs. my feet still suffer with the cold. Up to a few years ago, I used to get cramp in my feet.(well, still do but only occasionally) I usually wear up to the knee cotton or bamboo socks in winter and ankle cotton socks in summer. I wear bed socks most of the year. My right hand small and next finger go white 3/4 of the way down or more if hands get too cold ( this has been going on for at least 20 years) and left hand has recently started to do same occasionally.
My hand nails are always in poor condition, flaking, splitting, ridges both ways. Nothing seems to help. Also have had joint pain from about 9 years. But may not be connected.
i was 36-,now 61,hands suddenly turned shades of purple and white when out one day ,numbness fingertips-cant hold /touch anything.affects me all year round,
Same here. I cant touch hot or cold items. And now summer doesn’t make a difference. This year has seen forward progress in the disease
I was 62 when first diagnosed with RP, always cold when I was younger. I have very dry skin and flaky nails. Had lichen planus in my 40s when most of my nails fell off and had an awful skin rash. Nothing further lately but joint pains and cramps in hands and feet, I'm 65 now and can live with what I have now, just hope things don't get any worse!
What kind of specialist is best to find out if you have Raynauds?
Get them checked!! Little black spots on fingers or toes
Chronic pain with scleroderma?
i am living with scleroderma
