When you first visited your GP with R... - Scleroderma & Ray...
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My GP asked me if I had been around sheep and said he thought I had an infection , my hands were covered in ulcers. he prescribed anti biotics and sent me on my way .
The relevant finger was diagnosed as septic and I was sent away with a prescription for magnesium sulphate. It took a second visit to the same surgery but a different GP to diagnose Raynaud's. This was in the 70s.
I went with chilblained feet and was told to keep them warm! This was in the mid 70's. He didn't even look at my hands.
I had chilblains frequently as a child....they were 'just a part of life then' looking back could this possibly have been very early stage of Raynauds do you think?
I think my GP was on the right track,but he was quite an old doctor who i very much respected having been treated by him for many years,but i do not think he knew very much about raynauds,but we are talking about 26 years ago,that is how long i have suffered from raynauds and its associated illnesses.He said i had damaged the nerves in my hand(because i only had problems in my right hand to begin with) perhaps from a sharp knock or blow,and over time the nerves would repair themselves,but in the meantime,i should wear thermal gloves to try to keep my hands warm,i tried this but to no avail,so i saw a different doctor at the practice,and he decided to refer me to a general surgeon,but it was to be some time before i was referred to a rheumatologist.Now i suffer from a range of illnesses including CREST syndrome,and i have now developed pulmonary hypertension,but i do not believe a proper diagnosis in the early days would have made any difference to how i am now.
My former GP told me approximately 25 years ago that it was Raynauds that I had but it wasn't until he retired and the new GP that took over approximately 12 years ago and was offering free health checks and I had a blood test that it showed up that I had CREST. He immediately referred me to a rheumatologist who unfortunately was not very clued up on the symptoms of CREST and insisted that it was osteoarthritis that I had and if I lost some weight (I weighed 9st 2lbs) that I would not suffer so much pain in my knees. I asked to be referred to a different consultant and now have a very kind one who knows alot about the condition.
I got reffered to a peadatrician, and told the only way to relieve my raynauds was to wear gloves, follow a special diet and possibly stop playing piano. None of those has worked :/
I was encouraged to play the piano to help with blood flow!
I was referred to Vascular Consultant as GP was concerned at how cold my feet were.When I saw doctor from Vascular,she was very dimissive that I "just" had Raynauds even though I had aching joint and felt unwell.At least she ordered ANA blood test though that showed I had Scleroderma.After these results I was then referred to Rheumatology
My symptoms appeared in a matter of days, and I was admitted to hospital. I spent a month on the rheumatology ward during the height of summer. After two weeks of investigations (and lots of silly questions), the Drs suggested Scleroderma. That was 6 years ago.
I was lucky, in a way, to have had a GP whose wife also had Scleroderma (at the time of my diagnosis). He explained the condition and gave me plenty of time to talk about my symptoms. He also made some good suggestions on how to look after myself, which I still follow to this day!
I knew I had Raynauds when I went to get diagnosed and the doctor confirmed it - it was only when the medication disagreed with me and my symptoms worsened that I suspected I had secondary raynauds. The doctors were not overly keen on doing a blood test at first but I was insistent and the care I have received from that time to date from both my GP and consultant at the hospital has been really good. I have CREST.
i didn't go to my GP with symptoms of Raynauds,, it was discovered by the rhummy when i went with other problems to do with Scleroderma, he diagnosed both together
I think that I had Raynaud's all my life. Cold hands inconvenient when I was a nurse and my patients complained. It was very much later that I was diagnosed with Crest when I saw a rheumatologist who also gave me Nifedipine which made a big difference to my Raynaud's and stopped me being incontinent of urine, a shame I had carried with me for years. I am 82.
My Raynaud's was discovered when I was in hospital with pneumonia - the onset was shortly before I was taken ill. It was first mentioned to me by a medical student who was accompanying the consultant on the ward round when I mentioned my symptoms that had led to my hospitalisation. I think it had been coming on for several months, as for weeks I had had a terrible itch in my hands and they were red and raw. There was no follow up on the Raynaud's after I recovered from pneumonia. I think it was completely overlooked, but a few years later when I saw my GP about the onset of thyroid problems, I think I initiated the conversation about Raynaud's and I was given the chance to try nifedipine. I gave up after a very short time as the "cure" was more problematic than the medication. I have never been offered any tests of any kind. All the information I have had about Raynaud's has come from the R&S Association. I think my GP took the view that as I had the good fortune to have a good education, I should find out for myself and manage myself, and that's fine by me, as my Raynaud's is not that severe.
annbrien
I saw my GP with my cold and painful hands and feet when I was about 13 years old - he just said that I had Raynauds and that was it. That was 42 years ago though so I guess I was lucky that he even knew what it was!
My doctor diagnosed Raynauds straight away (apparently there'd been a documentary on the tv just before this time and lots of people were being diagnosed). He didn't really give me much information about the condition though and sent me away with some angina-like pills, which I didn't want to take at the age of 20 (14 yrs ago). 2/3 years later I was referred to a Rheumatologist and diagnosed with Scleroderma. I was then told about the RSA....
I saw my GP with two big moles of both of my feet, and my mom asked him about my feet as most of the time they were purple and red and the GP just said oh you have raynauds keep them warm and come back if you have futher problems and thats all he said. Most of the things iv found out about it is from what iv research on RSA.
The first time I saw a GP she dismissed me by telling me that everyone gets cold feet in winter! It was actually September, and I had been wearing fur boots all summer just to try to keep my feet warm. My hands weren't affected at that time. Six months later, I could bear it no longer and saw a different GP. He looked gobsmacked when he saw how white and cold my lower legs and feet were. Initially he gave my amlodipine, but they didn't suit me, so then I was given Nifedepine, which helps most of the time. I can only take 15 mgs a day though, otherwise I get horrible muscle pains. I just do my best to keep my feet warm. My nose is affected also, but my hands are not so bad. I also have osteo-arthritis and Sjogren's Syndrome, but no scleroderma.
I was diagnosed with raynauds about four years ago, when i was walking down a corridor with my science tutor, the corridor was cold my hands looked dead. Went to see the doctor who was my gp at the time, looked and felt my hands and said i've got raynauds and whether i've heard of it or not - i replied no. - sent me for a blood test which confirmed i had raynauds. i only found out more about raynauds by reading books in the libarary and by a lucky accident the RSA website. i get raynauds in my hands and my feet. been on nifidepene for over a year now. was on my some ointment before the tube split.
my gp, was fabulous about it. She spent time properly looking at my hands, printed of information for me so i could have a good understanding of the illness. She then gave me prescriptions for some creams to help calm the state of my hand downs and it all help, as it all looked like i had very bad burns. I can't thank my gp enough for her help.
I had a rash all over my body, two black and painful looking toes. I was given every ointment available but I finally called in a day when the GP decided I had scabies and was going to treat it. I asked for a referral to a dermatologist who said he couldn't tell me what the rash was but I had sclerosis and I needed to go to a Rheumatologist,
My GP suspected it might be Raynaud's but sent me to a Vascular department to be tested for any blockage first. I went to a Vascular lab and they did the cold submersion testing on me. I have such a clear and violent Raynaud's reaction that the tech even gasped at it. At the point it was no longer a vascular issue so I was sent to the Rheumatologist who treats me now.
I was diagnosed with Raynaud's back in 2000. I felt "unwell", but my symptoms were not very clear. My mother began with Sjogren's, which developed into Lupus, so we were aware that autoimmune was in our family. My GP did not take me very seriously when I requested an ANA test. Once I had the test, with the marker for scleroderma, I was sent to a Rhumetologist. I had not yet had full blown scleroderma. I credit the diligence from my Rhumetologist, and Cardiologist for my fairly good current health. I become breathless easily, but still can do most anything I want to, only more slowly. My GP has since learned to trust when I'm not feeling well (which in not often), and errs on the side of caution. Prednisone is an awesome drug when I get a flare (which, again, is not often - maybe once a year). I am on Tracleer and Revatio for heart and Raynaud's. It is a good combination for me.
when I first saw a doctor my feet where cold and purple and loosing skin .My GP told me that i had raynauds and ran out of the room and came back in with 5 nurses then every time i went to the drs. he was more interested in my feet more than anything so i changed doctors and now the doctor i see even thou he doesnt know much about it he is learning with me and he is great at doing new researches to try and figure this out
When my Raynaud's symptoms first started, I was having extreme burning and tingling in my face, chest, arms, and legs. My GP was baffled at what might be causing the symptoms. Soon, I added other symptoms, and my SED rate and CRP were very high. After two years of being passed back and forth between my GP and specialists, and suffering tremendously all the while, I found a rheumatologist who knew immediately that the burning and tingling was symptomatic of Raynaud's and also eventually diagnosed me with Rheumatoid Arthritis and Sjogrens as well.
My GP sent me to a Dermatologist who knew more than my GP. After a biopsy of the skin, the Dermatologist sent me to the Rheumatologist who told me what I already knew from personal research before and after the Dermatologist visit.
They had no idea what was wrong. They ( the 5th hospital in 10 weeks) mentioned RA-autoimmune...I went to the library and diagnosed myself with my symptoms and Scleraderma. I went to a county hospital Parkland in Dallas TX. Thet confirmed my suspisions!!! That was 14 yrs ago!!!
I was told to keep my trunk[upperbody] warm and giving nifedipine which I cant take as I have low blood pressure
Even though My PCP referred me to a RA he did sit down and talk to me about the Raynaud's. After my diganose of Scleroderma he said that he did not know much about it but because he had a patient with it he would study up on it and find out all he could. He did just that!
I had awful ulcers on the finger tips which bacame gangrenous(sp?). My then GP even arranged for me to have my right index nail removed but told me the infection was from bacteria that lived in my nose.
I lost all faith in him and didn't bother telling him when the same thing happened with my toes. I was hardly picking my nose with my feet.
Fortunately he left the ptactice and the new GP spotted it immediately, sent me for further tests which then diagnosed Systemic Sclerosis and a host of other auto immune diseases. Now I get fab treatment from the hospital and my GP who has learnt about it with me, even borrowing a book that I'd bought.
Hope everyone's wrapping up against the cold. x
I was diagnosed when I was 4years old. My mum was told at the time to just make sure I kept gloves on when it was cold, and that was that!
not much changed nowdays, i was just ignored when i told them i've got that. no advice or anything. they probably think i'm hipohondric. i've got rosacea as well but this was diagnosed by a doctor though.
On my first visit I think my GP knew what it was but didn't tell me and didn't do anything really, just told me it wasn't related to smoking as this was what I was concerned about when I went. It was only after visting a couple more times as the attacks got worse that I was prescribed nifidepine and then after about another 3 years I was refered to a rhumotologist!
i've had raynauds for 50ish yrs, i knew what it was as my father,and sister had the same, then it was just one or two fingers ,,now its hands ,feet, tingling and numbness burning etc... i have told doc 's all these symptoms at various times,, i have osteo arthritis and psoratic arthritis, have been asking to see a rheumy for yrs...the dermatologist thought i should see the rheumy but the doc didnt, said what does he know he's a skin man ??? he is a prof' though....anyway got to the rheumy after 6yrs fo asking ,and was greeted with now who told you you had raynauds ? she smirked when i said i knew i had as family members also suffer..she then said if you know what you have what are you doing here ??? dissmissed ....leaves you blank ?? I've seen another doc and being reffered to another hosp we'll see what happens ?
A colleague of mine looked at my hands and sore finger tips and told me to go to my GP and insist on having blood tests and a referral to a Rheumotologist. My GP at the time stated that the sores on my finger tips were paper cuts and the colour changes and pain in my hands were poor circulation. However, I could hear the voice of my colleague in my head shouting at me, " Insist on a referral, it's your right !! and do'nt let your GP fob you off ", 12 years later I'm happy that I listened to my colleague and I am under the care of an excellent Proffessor who is an expert in her field of rheumatology.
My GP referred me to the rheumatologist when my blood work came back with the ANA showing a 13.9. I went to the rheumotologist, pulmonary and cardiologist. The scleroderma had effected my skin and 1/8 th of my lungs. It wasn't till after we got all this under control that we discovered that I had developed pulmonary fibrosis of the lungs and Raynaud's.
I was told I had raynauds. My hands had been changing colour and getting extremely cold and painful, to the point I couldn't even use them. I was prescribed nifedipine. Horrible drug! Horrible condition. it's wrecking my life
my gp told me to stop smoking 
Definately do not smoke! Poison to your circulation..you will see a big difference if you stop..it's worth whatever it takes..for many health reasons!
The first time i went to the doctors with my Raynaud's, i was told by the doctor... "just wear warmer socks and slippers for your cold feet", which was brushed under the carpet when i explained that socks and slippers dont help with attacks! Only after i emailed the Raynaud's Association for help, and took along their printed reply was i eventually listened too... and prescribed Nifedipine. I think Doctors should be aware more of the condition...
correct scottish blonde there is a sense of ignorance more needs to be highlighted of this condition
I was told to give up smoking
No GP has really shown any interest in the bold draining from my fingers.
I've always noticed my fingers going white and crinkled after exposure to cold water even in Summer. My mother had the same response to the cold and I've just put it down to inheriting the genes!
It's been getting steadily worse. I'm 72 and I've noticed the response now is much quicker. I've observed myself that it is change in temperature which closes down the blood supply. Even picking up a milk bottle from the 'fridge in our centrally heated house can set it off.
It seems to affect only my fingers and no other extremities. The fingers now go white almost immediately down to the first knuckle on each finger. When the blood returns there is often "pins and needles".
I've been resigned to it and never thought that anything could be done. Now I've found your association, perhaps I'll discover otherwise!
All they ever say when they see my blue toes is "oh you have Raynauds." thats it
I spent ages being bounced between my gp and local hospital (neither seemed to want me), before i finially got refered to a specalist center. It was the absolute best thing because they taught me about raynauds, because i then understood it more i had more control over it. I go to the specalist centre once a year and locally for treatment. You can tell a huge difference between the local hospital and specalist hospital! As for gps i gave up with them years ago their answer was always here have some nefidipine (which lowers my bp too much).
I already knew I had Raynauds, as an ex of mine had been diagnosed, so when I had my first episode, though confused (why did this suddenly happen ?) I knew what it was.
I went along to my GP, and asked if there was anything they could do, and why it had happened.....I got offered a perscription (which I never cashed in) with no explanation and no further comments other than they were busy, and had a number of other patients outside waiting.
Like a lot of people, I was very lucky - at a family BBQ, someone noticed that I was hanging around the BBQ trying to keep my hands a feet warm - everyone else of course was just fine ! Family friend turned out to be an ICU nurse, and asked me a couple of questions - and insisted that I go back to my GP and ask for a referral to a Rheumy, as sudden onset Raynauds at my age (late 30's) was probably a lot more significant that just having cold hands/feet.
I have since been diagnosed with Limited Systemic Sclerosis, am on a selection of medication (Nifedipine, Hydroxycholoquine and a number of pain killers) and have recently been admitted for Iloprost infusion for Raynauds peoblems in one of my fingers.
Luckily, I listened to the family friend and am being looked after by a great set of doctors at my local hospital, with Cardio, lung and blood tests regularly.
My GP said its nothing to worry about. My fingers and toes will be ok. Come back in a few weeks if you still get attacks. Thats it!!! I did go back in about a month after it just got worse and worse, and she sent me for bloodwork, which came positive for ANA. Now she says we have choices. Can do nothing, can do further tests to find out what I do have, can send me to a rhumatologist, can prescribe drugs to lessen the attacks. What should I do?
The Raynaud's problem on my finger was diagnosed in the '70s as a cut that had gone septic. A return visit to the same practice but a different GP and I received the correct diagnosis.
My GP said I had Raynaud's, that it was quite common and nothing to worry about, and advised me not to go skiing!
22 months on still waiting. Doctor sent me for an ultrasound for my feet. 8 months later saw a Vascular Surgeon, Vascular Surgeon advised GP to send me to Pain Clinic and Dermatology. So a further 8 months managed to see Pain Clinic and Dermatology. Dermatology recognised Raynaud's and called in 4 other Doctors. Put on another waiting list to see Rheumatologist which is 48 week waiting list. (Still waiting).
I was instantly diagnosed with Raynauds and given Adalat which I take every day and is brilliant. I am suffering more at the moment so will go back to the doctor's for more tests.
My doctor just expressed mild amusement as though it was a quaint phenomenon he hadn't seen before. He told me there were no potential long term problems.
He just said i had raynauds - offered no advice, Didn't put 2 and 2 together with all my other symptoms. I had to go to A & E with regards to my lungs and list everything . The hospital worked it out .
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