Hi - I'm new , a bit muddled and confused, but definitely not neurotic!!

[niky257]

Hi. I'm new, so would like to say hello to everyone. I'm 40 (actually, nearly 41!) and I have been diagnosed with Raynauds - I had numerous blood tests prior to a diagnosis (by a previous doctor) but I don't know if I have ever been tested for Primary/Secondary Raynuads. I have symptoms that I don't know if i should put down to Raynauds or not - currently, my left foot and leg feel numb, and yesterday both feet felt numb - anyway, I'm scared to go back to my GP - being a 40 year old woman with 'vague' symptoms, my GP keeps trying to put me in the neurotic/depressed bracket - I feel so NOT depressed! I'm a (reasonably) rational person who can be made to feel so inadequate by a Doctor. I've even thought about seeing a Private GP (I can't really afford it!) to avoid going back to my own GP! I just want to know that my Raynuads is Primary so that I can attribute other symptoms elsewhere! I guess it is, else the GP would have made further investigation? Anyway, my reason for this post was to say hello, and thank you for this wonderful group that I have found. It wasn't meant to be a whinge - but I do feel a bit better for it! Best wishes all. niky

[zenabb]

You shouldn't care about your GP's feelings particularly if he is ignorant about systemic sclerosis (Raynaud and Scleroderma). Get some leaflets from the Raynaud and Sceloderma Association on line. Tell them it is to take to your GP. And full of self confidence go and see your GP with them, politely. Do this as soon as you can. It is your life.

[Hidden]

It took my GP 23 months sending me to various departments and waiting lists. After an 11 month wait to see a Rheumatologist. I asked my GP - do you know what Raynaud's is? YES. So I pointed out the fact he'd never examined me in all this time to actually identify Raynaud's! Keep persisting.

raynauds.org.uk/ this is the direct link to the Raynaud's site. Very useful good luck.

[living-the-dream-ssc-ray]

Hiya welcome to the wonderful supportive community here ! I am soon to be 40 and have lived with the scleroderma raynauds diagnosis for 16 years ! Great advice from zenabb and noone ! as well as keep yourself warm x

[niky257]

Thanks so much for your replies - I will persist; after my little 'rant' earlier, I feel much better about everything! The Raynaud's site is great, thank you, and I have gained much from reading the information on there...and yes, my greatest past time is keeping warm x thanks again everyone, great to be here.

[graygirl1]

Hello and welcome to the "family" nicky257. This is such a difficult illness with so many aspects to it that at times I too used to think my doctor was getting fed up with me. I was going backwards and forwards to see him since 1992 with all sorts of problems. I always had cold hands and feet but just put it down to one of those things. I had a long history of skin irritation and skin rash but thought I just happen to have sensitive skin. I always felt tired but put it down to the fact that my work was the cause. I suffered for as long as I can remember with insomnia but put it down to my body clock being all over the place because I did shift work. I used to tell everyone that "Tired" was my middle name. I just never felt rested. In 2004 I had to give up work due to severe and chronic back pain. Shortly afterwards my old GP retired and a young locum came to the surgery to fill in.

I went to the surgery one day as the back pain was not responding to any of the analgesia prescribed and my life was becoming more and more difficult. I met the new doc who said he had been reading my files whilst waiting for me and noticed I had a lot of complaints which went back years. We had a long chat and he ordered a blood test. Just the kindness of the young doc made me feel better that day. at last something was being done.The result of the blood test was sent back to the new doc as a matter of urgency within two days. I was called to the surgery as a matter of urgency where I was told my thyroxine level was so low I was in danger of going into a hypothyroid colapse. The doc said he could not imagine how I managed to function as this had been going on for years.The other syptoms then fell into place and treatment commenced immediately. I was then referred to the Rhematologist who cared for me until my condition became stable last year (2012) The Raynaud's was also a symptom of the Autoimmune Syndrome.

I am telling you a little about me just to say, you are not being at all neurotic. You are not imagining things. It is the nature of the illness but alas not many GPs seem to recognise it so people like us suffer for many years before we are diagnosed and treated. This condition resemble many different things and unless investigated, can be hard get a difinite diagnosis.

Don't be put off by your doc's attitude. Its your body and you know something is not right. Ask your doc to please send you for a blood test and refer you to a Rheumatologist at your local hospital.

In the meantime, keep yourself nice and warm. Eat and drink nice warm and nourishing things, rest and try not to stress too much. Stressing makes things worse. You will be fine soon. Good luck!

graygirl1

[living-the-dream-ssc-ray in reply to graygirl1]

wow graygirl1 what a blessing that young locum Dr turned up to your practice ! He obviously knew the symptoms ! Can I ask where your surgery is ?

For the last 6 years or so I have been invited to my local hospital in Southport to teach the new intake of recently qualified medics about the raynauds and scleroderma experience, as part of their rheumatology training. (btw - I am not telling you this to try and take claim for your clued up dr )

Once I put myself into a third person, I found the experience to be quite rewarding in raising the awareness of these not so well known diseases. I could also see some of these young adults with the world at their feet, having a wake up moment, as I was aged 24 at the time of my diagnosis - only a few years older than them.

I would cry before I got out of my car to go and give the talk, and I would cry when I got back in my car - thats the first time I have admitted that ! Though I dont do that anymore - the getting upset part !

My incentive for putting myself in this position was literally to help others in that if the trained human eye saw the markers (shiny, puffy fingers, tight skin around the fingers, small mouth, inability to make a fist, tight skin on body, etc etc.) they would recognise what was going on straight away, and the sooner the diagnosis, the less resulting damage for any new patient.

It has taken me a good few years to be as 'matter of fact' about the life changing events this diagnosis can bring ! It has certainly put me on a different path than that which I had envisaged for myself pre diagnosis ! But I know, ultimately, that all is well in my world and I feel blessed for each day x

[graygirl1 in reply to living-the-dream-ssc-ray]

Hello there. You're very brave, and what a privilage to be called upon to teach these young medics? My doctors surgery is in north west london where I live.

The real problem with diagnosing Autoimmune disorder is that the many syptoms resemble other things, you see. I started out with a bad back and painful knees and just being tired all the time but because I was working as a nurse on a very heavy unit me and my old doctor put everything down to the work. My skin sensitvity and skin flares and lesions were put down to my having siblings with asthsma and eczema ( runs un the family) All sorts of creams were priscribed. non helpped. This went on throughought the eighties and got worse in the nineties. I had a new complaint on a weekly bases. To be fair, my old GP did refer me to a dermatologist who said my rashes and skin lesions where due to trauma and insect bites, gave me a tiny tube of numovate ointment and sent me on my way never to return. Of course I would know if I'd been bitten or suffer trauma to my legs and body but I was ignored.

My back problem got worse and so did everything else, when I eventually met the young locum on one of my many visits. By this time my old GP was exasperated as he had no idea what to do for me with the pains being uncontrolled and everything else. If the young doc hadn't come along in 2002 I think I would have driven the poor man around the bend. Good job he retired.

The illness takes years to put a name to it and it takes years for us to readjust our lives in everyway. It takes years to get to grips with management of the different symptoms, the medications, to change the way we do things and places we can go to, how to get there, what clothes to wear and do we need to carry extra clothes in case we get cold etc. We can't just do simple tasks without having to think and plot how to do them. Autoimmune Disorder of which Raynaud's is one symptom, is a life-changing event. I am learning more and more each day. The trainee docs need to know how to recognise this illness to prevent needless suffering for future patients. You're doing a great job. Keep it up. All the best.

[nettie545]

Wow living-the-dream, well done on going to help train at Southport! What a great opportunity for you! Honestly, I can't believe how little most GP's know about Raynauds etc. I took a whole write up about my symptoms to the Dr. and my son's Dr (fybromyalgia) and he really sat up and 'heard' me and got pro-active and is sending us both to a Rheumatologist, so at last, some action!

The more we speak out to each other and the GP's, the more people helped. I am going to put pamphlets in the Surgery as well. Keep warm everyone, keep positive and keep smiling.

[living-the-dream-ssc-ray in reply to nettie545]

Yay Nettie ! and the more people that know about this, the more funds available for finding that cure ! btw - are you 'cave woman' on the raynauds and scleroderma association's fb page ? x

[nettie545]

Huh! 'cave woman' what's that about?

[living-the-dream-ssc-ray]

ah not you then ?! There is a lady I have been bantering with called Annette on the raynauds and scleroderma facebook page ! obviously not you then ?! I thought you may have been the same person ! have a look at the posts on the facebook page ! Im eskimo and Annette is cave woman!

How are you doing today nettie ?

Ive been belting out the Andrew Lloyd Webber numbers this morning to get myself feeling good ! Ive been on Broadway in my kitchen haha ! - Living the dream x

[graygirl1]

Singing is great living-the-dream-ssc-ray. The sun is shining outside and the song that has come to my mind says " as long as you wake up, and see the sun, it's a good day". Another line of the same song says "as long as you're able, to put food on your table, it's a good day"

A drop of "One Love" by The Honerable Robert Nesta Marley (Bob Marley) good for all and is always on my chart. It lifts the spirit even when the body is in pain. Keep singing and have a pleasant day.