Hi everyone,
My name is Cathie. I was diagnosed with crest 5 weeks ago. The results of tests are still ongoing. I am a single mother and full of anxiety for the future of my children.
I am not yet on any medications, however the burning and itching sensation in both my feet are really preoccupying as is the tightness in my hands..
Any advice would be extremely welcome...
Thank you x
Hi Cathy
I too was diagnosed 7 weeks ago, so understand your anxiety. I have been taking comfort from this site as there is lots of solid good advice. It is such a rare condition that doctors have either little or no experience, so it is important to find a good Reumy who has an interest and knowledge of this incredibly rare disease. The real experts in my opinion are the wonderful warm people on this site. In times of dispair I find myself logging on and it calms and enlightens me. I am coming to terms with this and I am educating myself so that it equips and prepares me for the future. I dont want to be a passenger on the sclero bus, i want to be the damn driver! One great piece of advise on this site is not to trawl the internet, it will only serve to alarm you....so resist if you can. Everyones journey is different. Look after yourself, eat well, rest well and listen to you body. I am in a much better place having found this site, i have found answers that the medical profession just don,t know the answer to.
Keep reading here. God bless all you lovely wonderful generous people on this site, and thankyou all for sharing your incredible stories.
Thanks Claire,
Its a lot to take in , I'm not confident with my' Reumy ' she's very unempathetic, so I may look at a referral to a different one.
As i've discovered on here everyone has different symptoms and i'm trying to find a coping mechanism with each one .... I am not on any medications as yet as tests are still ongoing.. How far down the treatment road are you if I may ask ?.
Cathie x
Hi Cathy....so nice to be acquainted. I have just had lung function and echocardiogram which is standard for baseline measurements and cruitial for monitoring. These I beleive are done annually. My symptoms are the same as yours minus the feet. I also have very mild reflux for which i have been treated with Omaprazole very successfully.
I believe we are in the very early stages of the disease, which is a good thing, to be picked up early. I see my Rhemy next month for my 2nd appointment so not sure if they start any form of treatment, or adopt a wait and see policy. No doubt someone on this site can answer that with more authority than me!
Where abouts are you Cathy?. Im in sunny Devon. So far feeling confident with my GP and Rheumy
So nice to have someone to talk to who is at the same point as me. My GP is wonderful and has told me with good care there is no reason not to live a fairly normal life for many years to come. He tells me one of his patients was diagnosed 17 years ago and has only just stopped doing half marathons!
Claire x
Hi Claire,
I live in Hertfordshire,
I have had x rays and a scan which show Fibrosis on both lungs (I'm not a smoker) and calcification on my kidneys , I have no clue what that actually means... The toes on both my feet are numb which was why I went to the doctor 8 months ago and was told it was a trapped nerve.... I have trouble with my oesophagus and also also digestive problems... I have a barium swallow and CT scan and lung test coming up and dread more bad news !...
I've got to get back to work next week the bills don't pay themselves! but lack any enthusiasm for it... I love Devon one of best friends lives in Chudleigh, lovely part of the world lucky you... How old are you Claire ? don't feel you have to answer if you'de rather not ..
Cathie x
Hello Cathie - and Claire too
I went through just the same thing as you Cathie about 3 years ago. I'd been going to my GP for several years with various symptoms but he never looked at the big picture. I feel like he thought me a hypochondriac. I eventually was referred to the hospital and like you I had every test going which took around a year. CT scan, barium swallow, lung, heart, kidney checks etc. I also had your symptoms re the sore feet, tight skin etc and was finally diagnosed with CREST syndrome, or as some doctors say, systemic sclerosis, as well as Raynaud's and sjogren's (dry eyes and mouth). I also have the oesophagus thing. I was eventually given appropriate drugs and I'm learning to live with it. The rheumatologist told me we can't cure it but we can manage it. So I've accepted that. It all sounds scary, mysterious, and no one knows what you are talking about it. BUT we can carry on... (I'm 77 now). You will learn more about it over time. I think we have to accept the 'bad' days and enjoy the 'good' days. My GP admitted that he knew nothing about this disease. I wanted to say, well get and read up on it, but I didn't dare. I hope you will feel less apprehensive as you learn more about it and slowly come to accept this "thing" we are all stuck with. I find eating smaller meals helps. My rheumatologist told me to never eat after 7 pm to help with reflux. I also have a special reflux pillow which you can find on the Internet - it's a giant wedge that you put under your proper pillow so that you never lie flat. It takes a bit of getting used to but I find it helps my stomach as I always feel full - the oesophagus thing prevents digestion working properly.
With my sore feet - they're fine all day because I wear knee high compression hose but the minute I take them off my feet are screaming and I feel like my skin is too tight and about to split. Of course it never does but the skin on my feet keeps me awake and by morning it looks very red. It's as if the elastic type knee highs hold my skin together and my GP prescribes these which is a bit of help.
I think if we all keep chatting here we'll find ways of coping.
It's good to meet you both Claire and Cathie - I'm not going to say "don't worry" because we all do - I hope that by confronting "IT" head on we can all cope with it. Very best wishes to everyone here who is stuck with the stupid disease.
Betty x
Thankyou Betty....what kind comforting words.
We 'newbies' are learning so much from your wisdom. When I am awake at 2 in the morning and my mind is in turmoil I find myself reading all these posts. So many positive stories, and I am in awe of how brave and courageous people are.....and this gives me strength.
Thankyou for the advice on the pillow.....as i am having increasing problems with reflux and this sounds like the perfect solution.
Claire x
Small world....I moved here 10 years ago from Watford, and i live 5 miles from Chudleigh.
Its a real rollercoaster of a ride. The main thing I have learned here is that treatment for each symptom can be very effective. I too have a kidney problem whereby i only have 50 percent function. No symptoms just picked up on all the blood works i have had done. I dont need treatment at the moment for that so they just keep an eye on it. I do hope other members join this discussion as they can give you excellent advice and give you comfort and valuable information. No one likes these tests but are necessary. I think fear makes the wolf bigger than he is.
Claire x
Ps I am 58years young 😁
It is a small world, I live in St Albans and am 57 years young !! lol ...
Once all test are complete and I know what im dealing with it will easier to move forward...
If you ever fancy a chat i'd be happy to ...on way to doctors in a bit...Have a god day and thanx for your advise it helped...
Have lovely day in Sunny Devon.
Cathie x
Hi Cathie......hope all went well with the doctor. Yes would love to chat x have a good day x
Get yourself big pot of Aqueous cream and gently rub it in as much as you can. I find that it stops the itching and softens the skin. At night you can smother your feet in it and then put socks on to avoid making a mess of the sheets. Good for your hands too and nice to use. It is also quite cheap. You may be able to get in on prescription as I do.
I have had CREST for about 15 years. It's not the end of the world, you just have to learn how to manage it!
Hi Winifred, reading posts I found this reply where you say hat you've had Crest for 15 years and it's not the end of the world. I was recently diagnosed and I'm terrified. I can't think about anything else. At night I can't sleep, because of the fear. Can you tell how you manage your disease? I don't watt to ne intrusive, it's just that I'm looking for some reassurance here with people on the forum since I don't have friends or family nearby. Thanks!
You are worrying more than you need to. Firstly if you have CREST then everything is a much slower process. Are you under a good rheumatologist? Your doctor can refer you to one. My medication includes drugs to relax my blood vessels and another to help with reflux. I have pulmonary hypertension due to the blood vessels between my heart and lungs becoming less flexible. So......... how do I manage all this. I relax. Stress just makes it worse. I slow down. I can still do most things but at a slower rate. I avoid using energy for things I can avoid. I don't keep going up and down stairs, I plan what I need in what place. I use the bus a lot because I can often get closer to where I want to go on the bus and I get off at a stop where I walk down hill rather than up hill. I keep myself warm - hot water bottle in the winter to boost heating, drawing curtains across windows early, wearing a thin woollen scarf indoors. When I go out I make sure my hand are warm before I venture outside, wear a thin pair of woollen gloves or silver gloves under my outer gloves. I use loads of aqueous cream on my hands and legs (and anywhere else where the skin is dry). Basically, I carry on with life and don't think too much about it. Hope this is of some help!
Hello Winifred. It's so generous of you to take the time to write such a throughly reply. I can't thank you enough. Yes, my gp referred me to a rheumatologist,that is going to see me in two weeks. I find inspiration in people like you that are able to carry on with life without thinking too much. It's the right attitude to take. Unfortunately for me, I haven't been able to handle my emotions, and after almost a month since diagnosis, I'm still in panic mode. Tonight, I'm going to read your message over and over again to see if it helps me to relax a bit to be able to sleep again. Thanks again Winifred.
Thank you , i'm gonna try that... x
Hi there Catkar first things first no matter how hard this all is the thing that I have found out is that stressing is the worst ... ur on the best site here and on ur crap days come on here and just talk about how ur feeling and what’s happening to u I rember when I was diagnosed I thgt I’d be dead in 5 yrs I went into panic mode I had a 4 yr old and 6 yr old boys and I cudn get off the floor with pains and flares my whole world fell apart. It’s like a death sentence when u hear ur sick so we all know how u feel. I’m 50 and was told at 44 I had MCTD with Scleroderma crest Raynauds lupus flares nightmare !!but as everyone says on here u find ur self adapting to it allbut the best thing to do is not to panic or make urself worse. My advice is one day at a time and just do what u can each day and the nxt day will take care of itself . Slowly educate urself and rember everyones different no two people get the same. Im a non smoker always ate well and looks after myself but I think stress triggered mine illness so now I don’t stress iv learned to accept and let the crap around me all go over my head Yoga wud be a grey thing if I had the time but please try not to worry come on here and get askn question about ur body an everyone here will try put u at ease. U will find ways of changing ur habits concerning food and sleep to help reflux I sleep with bed raised I never eat after 7 I drink gaviscon last thing at nite to help stop acid coming up from gut into my esophagus Apple cider vinegar Helps digestion GERD if uv Raynauds keeping urself at same temperature is the way forward Thers so much advice here just ask but don’t feel alone and try not to be scared it’s all ok it’s just a matter of changing ur ways of doing stuff hope this makes u feel bit better. Uv lovely hair try keep smiling ur gona be ok 🙂
Hi Cathie. Thx 4 sharing. Just reading all the responses you got has helped me.i see thry share alot and I needed to know these things. I was planning my funeral and will at 1st. But to see others experiences and solutions helps me tremendously😍
Hi Mecca,
I know what you mean about planning your funeral... My mind automatically went to worse case scenario.... I am still undergoing tests, But my liver is damaged a normal reading of Gamma gt should be in the region of 48 and mine is 503 ! not sure what that exactly means but have appointment to see my Rheumy on the 3/4/18 so will ask questions, but the Gastro consultant has put me on liver meds for 3 months and I need to be tested again... I am taking a more proactive role in my crest now rather than reactive .... finding out as much info as I can ... I wish everyone well and positive thoughts to all.
Much love Cathie x
Already I am learning more from people on here who are actually living with these diseases. Most of my doctors, I have about 8, don't know anything about it. SCARY
Look into medical marijuana oils and salves. Helps with itching, inflammation and pain. Also get on a pure food diet. 🌻🐓
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