Hi i'm Pete 55 years old and have been diagnosed with CREST and RAYNAUDS It's all new to me . Don't know what to expect . Doctors tell me . To check the internet So here I Go all advice welcome .
With time I'm sure I will be able to help others with these problems
Thanks Pete
Hi Pete.
I’m the same ! I was diagnosed about a year ago with crest (limited systemic sclerosis) and some overlap conditions. I’ve had raynauds all my life. The internet and this site are brilliant although everyone is so different. I’m seen locally in Essex and 6 monthly at the Royal Free London. Are you in the Uk. What are you main problems at the moment ?
Sam
Thanks Sam .
I was diagnosed around march time . I was told I had Crest with overlapping conditions .Lupus and so on I've had Raynaud's for about 2 years but I thought it was just cold hands and my shoes seemed damp . I thought the feeling weak was just being unfit . I suppose my main problem is when I ask anybody about it . Nobody seems to have the answers . The ache's don't seem bad enough to complain about . Other problems some sort of lung thing
People just seem to think its a moan . Because it cant be seen . I tend to spend
time looking for answers . I don't want to take pills that cause problems . To prevent others .
This probably all sounds stupid. But I'm not sure what to expect
Thanks Pete
Pete
You really need to push to be under a specialist centre and probably a local rheumatologist too. They will need to do yearly checks. I hate taking the tablets but the aching and skin changes are progressing rapidly so I’m on methotrexate weekly I haven’t managed to tolerate anything for raynauds (have tried a few). On a new pill for my cough with they think could be caused by reflux when I lay down. I have some lung nodules with they say are calcium Can’t say it’s helped much. I also find the hardest part is that nobody has heard of it The specialist centres really are the best place for information. I feel like you what should I expect and what will happen next. The truth is because it’s rare and different in everyone nobody know. I am so much like you in I thought I was just so unfit and couldn’t figure out why I felt so rubbish and tired all the time People without this couldn’t imagine how much it changes a person. Very frustrating! Keep pushing your GP to refer you to a rheumatologist.
Good luck
Sam
Hello Pete. I am 57 and go to the Royal Free specialist unit as well as a rheumatologist at Norwich Hospital. I have a supportive GP because I asked the practice which of their doctors had most experience with auto-immune conditions and made sure I was registered to him and explained everything. I am on Sildenafil, which keeps the Raynaud's at bay, with Methotrexate to dampen down the auto-immune response, plus Prednisolone steroid to help keep my muscles together. So when you say "I don't want to take pills that cause problems " I'd say that I took that line until 2015 when things worsened. The drugs have now brought me back from the brink of collapse for which i am V grateful. It seems everybody has a different galaxy of symptoms. You have to work out your own way forward, but not necessarily expect the doctors to get everything right all the time. Keep in touch with the group - they are a good lot. Best wishes.
Tim
I have had Raynauds since my teens, 50 years, and was diagnosed with Crest 30 yeas ago and until the last few years have managed live a normal life. I am quite shocked that you were just told to look on the internet. I suspect the Doctor you saw knows very little about it. Each patient is very different, so don't assume you will develop every symptom. You need to be seen at a specialist centre, don't know where you live, but there are centres at the Royal Free in London, Leeds, Newcastle, Glasgow, I am seen by Prof Herrick in Salford who is brilliant. Best of luck.
Thanks Duttie
I'm looking and learning . I don't have any experience with this every step is new
I try to think of myself as a realist but my wife says I'm a pessimist , I honestly don't no , but I tend to worry when I cant find answers . Aches and pains in a lot of places . Silly things like eating , other problems some thing to do with lungs
I was told I was just at the point of denial . Not sure what of ?
, I will ask if can see somebody who deals these conditions .
Thanks for your advice about it
Pete
Hi Duttie,
I am also seen by Professor Herrick :). i have raynauds with diffuse cutneous sclerderma (still cant spell it) Am taking mycophenolate - i must say its helped with the skin but hands are still tight and stiff so am gonna try hand soaks in epson salt. Am taking nifidipine for the raynauds. Any tips much appreciated.
regards,
Naila
Hello, I have limited scleroderma, so not quite the same as you. My hands used to be tight and puffy, I have had my wedding ring enlarged twice. But for some unknown reason they have gone quite thin, my wedding ring now slips off and I don't wear it for fear of loosing. I haven't taken mycophenolate. I think exercising them in warm salt water would help. I have been in the hydrotherapy pool at Steeping Hill hospital in Stockport this morning and exercising in warm water helps all my joints. I have some of those squeezy stress balls and when watching TV use them. I also lather my hands in cream at night and then put on cotton gloves. Nifedipine gave me headaches, I now take sildenafil for the Raynauds. Did you go to the Open afternoon at Salford this summer, I found it very helpful
Best wishes.
Hi Duttie
I too have limited Scleroderma (CREST) diagnosed by accident about 3 years ago and have had Raynaud's for the past 30 years or more. I have Illoprost transfusions every 5 weeks for the Raynaud’s as all other meds didn’t agree with me and I have had a few digital ulcers. Other problems are food getting stuck in my throat whilst eating due to the Scleroderma affecting the muscle, calculus lumps in my fingers and the most embarrassing is faecal incontinence also caused by the Scleroderma so now waiting on an appointment to see someone at The Royal in Liverpool to see if nerve stimulation can work on the inner sphincter muscle. I have been told that so far there has been no evidence to show that it works for people with Scleroderma... we will see 🤞🏻 I have also been referred by my GP to Prof. Herrick at Salford, who I’m due to see this month. I have really lost faith in my Rheumatologist due to my last meeting with her, where I explained on how tired I was getting and the pain I’m in, which isn’t normal for me, and her response was “everyone gets tired “ !!! The skin around my neck has started to tighten quite quickly making it hard to put my head back and becoming a little more breathless. It is really hard for people to know how much pain and anguish you are going through when they see you looking as you normally do. I have also found it hard for my husband to understand that I can’t do some of the things I use to do but he’s getting there and hopefully once we’ve seen Prof. Herrick he will have a better insight.
Yes I have the same symptoms, eating etc.. I am sure you will find Prof Herrick very thorough, be aware it might be along session and SHE often runs late. The other person you may well meet is Liz Wragg the Sclero nurse, she is a well built lady with dark hair pulled back from her face, wears navy uniform, she is a Sister. She could well bring you forms to fill in and a leaflet about Salford. She is a good person to know, if you have any queries she is BRILLIANT at sorting them. Best of luck.
Thanks
Hi Duttie,
I have an appointment to see a rheumatologist in Coventry. What do I need to do to be referred to a specialist centre? Could I be seen by both? Do I need to ask my GP? Thank you very much.
Hello, I don't think Coventry is a specialist centre, but I may be wrong. I am sure SRUK would be able to tell you the nearest. I don't see why you couldn't be seen by both. Either your GP or Coventry could refer you. I used to live in York and the hospital there referred me to the specialist centre in Leeds. When I moved to the rainy west, Leeds referred to Salford. Best of luck.
hi Pete, yes, it's a continuing learning process and sometimes things happen quicker than others, don't be too pessimistic, try to think positive. You do need to be under the care of a rheumatologist though, they have the best advice for everyday problems but also listen to your body and go with it, if you're tired, rest as much as you can and maybe try some relaxation classes, I hate taking tablets too so trying to put that off for as long as I can. It can be very frustrating to live with all these changes. Good luck, keep posting!!!
Hi Pete, You have come to the right place, in terms of finding out about your condition. I would have a browse of some of the previous posts on this site because there are quite a few from people who are newly diagnosed and have asked similar questions to yourself. Look on the SRUK site for information on scleroderma and to find out if you have a local contact in your area. Get yourself in to a specialist centre, or to see a Rheumatologist who knows what they are doing.
Whether you are a realist, pessimist or optimist I don't think it matters. All states of mind can have their advantages and disadvantages at times 
You want to be achieving a good balance between doing the things you want, but not pushing your body too hard. I think working with it rather than fighting against it is possibly a useful phrase. The medications are prescribed for good reason so if they feel you need them for disease control or symptom relief then I would take them.
Don't expect other people to understand and then you will not be disappointed...is my view on the situation. Scleroderma is a 'minority sport'...no one has heard of it unless a). they have it b). they are a Consultant Rheumatologist. There are not many people who fall into those categories. Some symptoms look more obvious than others...some people are more observant and empathetic than others. Have a strategy to manage your symptoms in different situations and then you can tell people how you need them to help you. Most people might not understand why you have your problems but if you are specific about the help you need they can follow instructions.
Any changes in your health circumstances are hard to take so be easy on yourself and make sure you are doing things that are nurturing and nourishing!
All my best
Lucy x
Hi Pete or should I say PSG83
I was diagnosed a couple of years ago and can understand your concerns. I'm Raynauds, Scleroderma (systemic sclerosis or CREST syndrome) plus Sjogrens. It took me quite a while to get the GP to believe there was actually something wrong with me when I kept turning up with various symptoms and I'm convinced he thought I was a hypochondriac. Two years down the line now, he said at my last visit "I've never seen this before it's quite rare." No wonder he thought it was me that was crackers. Anyway... it's sorted now. But I find people still think there's not much wrong with me because I look so well with the scleroderma making me look like I have a healthy tan and plenty of colour when in fact I'm feeling rubbish. I'm now getting the calcinosis too and all the other symptoms that come with the disease - hey ho!
I think you should request a referral to a rheumatologist at your local hospital as this disease doesn't go away, it progresses and at some stage you may need medication. I now take an autoimmune suppressant and I have to visit the renal unit to keep a check on my kidneys. Everyone's experience is different and various elements such as Raynaud's, calcinosis, rheumatoid arthritis, lung function, scleroderma, etc etc are at different levels for everyone so it's difficult to compare symptoms with anyone else.
I think it's important to remember that some of the stuff on the Internet spells out the worst scenario so I try not to get too alarmed. Good days, do things, have fun, see people. When weak and tired put your feet and try not to worry too much.
I've probably not told you anything you don't already know but it does help to know that people here understand and are always willing to listen.
It's my 77th birthday today and I woke up again this morning so it hasn't seen me off yet. If it's of any help I have written a lengthy piece about this disease on my blog. bettyblogs.weebly.com - the main part of the blog is just old lady's drivel but if you go to the menu and select 'More' you'll find a page entitled "Living With Systemic Sclerosis (Crest Syndrome)" which you may find helpful.
Hi Pete
Yes it's very hard at first l think. It's very much impacted on my social.life which used to be around dancing, cycling,hiking ,and now can't do any of these. The adjustment takes time,and denial.is a part of it( a big part)
I agree you must get referred to a specialist,my rheumatologist suggested this himself, he'll co work it with her,and that feels appropriate.
It's a very uncertain time,and if you're like me,you'll soon have seen about 15 specialisms you never thought you needed, for a long time there weren't any antibodies showing so that was weird.
The scleroderma antibodies still feel like a big shock,mine unfortunately may mean diffuse tho I'm holding onto the possibility it'll be limited...
Hope you'll get lots of support,
Lila
Thanks for the advice Everybody as taken time out to give me . I really appreciate it . Its great not to feel alone . Even though I would rather nobody had these problems .
I will try to keep all my progress online and be here to help others
Thanks So much . Pete x
THANK'S for all the Super reply's Giving me some great advice . Support when I was really needing it . THANKS
Pete .
Thanks Everyone
I have been seen by the rheumatologist at my local hospital . He seems to take a lot of interest in this condition . He also takes time to explain what is happening . He let me know that I have Crest overlapping Lupas . He explained to me about the scaring on my the lungs . Saying that his main concern was Vascular problem's . Down to family history . My father and my Sister both lost there legs .
He pointed out that the Meds he had prescribed where needed because this is a condition
that wont just go away . The earlier things are dealt with the better .
barium swallow .thing last week and I have seen a Gastrologist today who is arranging a endoscopy .
So to say the least , Thing's are being dealt with very FAST .
The cold weather is beginning and I'm remembering how the Raynaud's feels .
Thank's Pete
Raynaud's augmented?
Primary Raynaud's Syndrome
