Help - I'm Newly diagnosed June 2016

Here is a whole new world I knew nothing about until the last few days . After a lot of pain, a lot of unknowing thinking I am a hypochondriac , little help from my GP - it took two trips to A & E for someone to finally listen to me . I got Pneumonia last September, got very sick with it and eventually got a bit better but then had another attack on my breathing this April . So i went to A & E and was told i had a collapsed lung . Not knowing why all sorts of test were taken, bloods CT's X rays. After a few weeks they confirmed it wasn't lung cancer which I was grateful to hear and relieved. My other symptoms which started in winter this year was the Raynaud's. I also have had problems with my digestion last year and had my gall bladder removed as it was diseased and causing me problems. I had a Barium swallow x ray done and an endoscopy done recently which showed I had GERD and bad acid re flux. Food just gets stuck . So last Thursday I was told by a rhuematoligist at the hospital that I have Limited Scleroderma and CREST . Since this time I have been researching the disease as before I knew nothing . So far I am feeling very scared to read everyone's stories. I don't know what the future holds, Am i recovering from the Pneumonia or is this a symptom of Sclerodernma. ? I have so many symptoms of what everyone is talking about . HELP where do I go from here ?

29 Replies

  • Hang on in there. You are not alone despite how you feel. Scleroderma is a horrid isolating condition, and I find most doctors are useless as they really dont understand the day to day challenges. I have managed to work out a pain relief system that works for me and allows me to continue some form coping, no thanks to Drs. Just getting a good night's sleep is/ the main challenge. You need to work out what works for you - which foods are worse/better, does is help to not eat after a particular time and so on. you also need to regulate what you do so that if you need to rest - you can - don't feel guilty - listen to your body. Good luck we are with you every step of the way.

  • Thank you I will take on board what you say and try the food thing too . I don't find it easy sitting around but am learning I need to slow down and often to don't have a choice and have to .

  • You've already had most things, the difference is that now you are going to have the treatment you need instead of a lot of guesses. Best wishes.

  • Yes you are right - at least I can face my battle now . Thanks

  • You are probably over the pneumonia by now...but have you been advised to get the jag for this? I had it recommended by my rheumatologist and went to my doc to have it. I had pneumonia twice this year before the jag so am hoping that this will prevent another attack for a while. My lungs are damaged through the Scleroderma so sympathies. Good luck going forward and try not to stress too much ..just take each day as it comes.

  • Hi thanks for replying. I have had the pneumonia jab this year . I had an attack in April but as I wasn't infected as such , this wasn't pneumonia but the pain was the same . Even now it hurts to breath three moths later. Although manageable . I still get out of breath. I am not store if my lungs are damaged from the pneumonia or from scleroderma . What symptoms do you get with your breathing? I would be really interested to know . Thanks .

  • Scleroderma takes a lot of getting used to. Destressing is a good policy, as Galama says.

    What I eat and drink, and in what quantities and when, makes a big difference to my symptoms. No more tea or coffee. Nothing acidic to eat at the end of a meal. Reduced wheat and sugar. It's an ongoing process of experimentation to see what works for me.

    You can take strength and inspiration from your fellow citizens on this discussion group. They are a great bunch.

  • Thank you - I will take on board your advice ..

  • Great advice from all below as normal. if I could just add, try if you can to do a bit of research to find the best place and consultant to look after you. I did it and feel blessed that I found St Helens and Aintree Hospitals to care for me.

  • Thanks for replying, I have only met the rheumatologist two weeks ago and going back again this week . He seems nice enough. I will ask him more questions I think. I have private health , although NHS With my path at the moment. Not sure if I should use my private health insurance to go further with it , will ask him I think on Thursday....

  • That sounds exactly like myself!! I am still working, i explain to people what my condition involves and they dont seem to take it on board. Its like " i look ok", so i must feel "ok". Invisible illness. I have difficulty with acid reflux, i am going for a barium meal next week. Awaiting results of a second chest xray where they found a nodule in one of my lungs and a lot of scar tissue. There are days when i dont feel too bad and then there are others when i cant even get out of bed. I live in Northern Ireland so there are no rheumatologists here that specialise in this condition, not that im aware! Amlodopine has helped with the raynauds, gp perscribed me steroids.and lanzoprazole. I dont eat after 6pm, and i dont have any fizzy drinks or alcohol, that helps with the reflux at nite. So glad i found this site, feels like a person is not alone anymore. You take care.

  • Thanks for replying to me . Can you not get a referral to someone in all London? If you were diagnosed by your doctor, he/she did well as my doctor has been useless . Made me feel likes shouldn't be there and I was making it all up. I would be really interested to hear more from you and what your symptoms are and how it's affecting your life . Keep in touch 😃

  • I really cant complain about my doc or my rheumatologist, have pretty much all my symptoms under control. Inflamation in fingers n feet well improved. I have had symptoms for about 6yrs now, starting out with swollen fingers and feet, took a rash on my face which doc originally thought was lupus. Further tests revealed scleroderma, xray in feb this year showed up fibrosis and a nodule in my lungs, just had another xray repeated 2wks ago, no results as yet. Having bother with food sticking in my aesophagus to which im going 4 a barium meal test in morning. I just have to b careful not 2 eat fatty foods, drink fizzy juice or eat after 6pm. I find this helps a lot when i ly down at nite to sleep, not much reflux now. When attending a wedding earlier this year, our meal wasnt served until 7pm, i actually vohmited on our way hme and found it difficult to catch my breath. I just take each day as it comes, some better than others energy wise. Hope u get sorted out soon. By the way i live in Northern Ireland so cant imagine getting a referral to a specialist in London. Take care n touch.

  • you are in a much better situation I was 20 years ago, your ltd scleroderma and CREST are managable and you will be fine!! take my word for it.. best wishes and keep on writing here, you will have read some stories already and you know there is light at the end of the tunnel, it may take time but you will be ok, your diagnosis is not what one fears most about this disease. :-)

  • So what other things could I fear most? I want to know more. Thanks ..?

  • You would have a worse prognosis if you had a diffuse scleroderma affecting inner organs (heart, liver, kidneys, lungs) and the antibody anti-Scl 70. With CREST you will have ACA which mark a less severe variant in case of lung involvement.

    you can read about it here. So put your mind at rest. I have anti Ro, also a less aggressive one, but a friend of mine had Scl 70 plus breast cancer, she survived it all and remarried a few years ago. She had some 3-4 rough years but is doing well now at ca.60. So there are big individual variations. You need treatment to control symptoms but your diagnosis is what many SS patients would gladly swap for. xxx

  • Okay , I'm not sure about all the tests you are talking about as an still waiting for more tests to come back . Not sure why they take so long. I do have lung problems and esophegal problems which I presume is related. So what does diffuse mean ? Could what I have be diffuse? As my lungs and GERD is involved.

  • CREST or ltd scleroderma is milder and doesn't involve much skin nor inner organs, apart from lungs and heart, diffuse means hard skin allover, all organs may be fibrotic and much more severe course compared to CREST. The anti-body blood test will confirm which anti-bodies you have; probably Anti-centromere. On the whole CREST is a much milder variant.

  • Hi so sorry to hear what a tough time you are having at the moment. I was diagnosed with Pulmonary Hypertension and Systemic sclerosis (scleroderma) seven months ago and felt like I'd been hit by a train. Have had acid reflux because of the scleroderma and also have Raynauds. Things are more stable now. Hang on in there - an overload of medical appointments can be daunting and overwhelming in this "new world " but try to stay positive as things will settle down once you're on the right treatments. I'd avoid looking on the internet for information as there's a lot of stuff out there which can really freak you out and is not relevant to your individual situation. There's some fantastic people on the forum who understand and can give great advice and support. Happy to chat anytime and let us know how you get on. X

  • Oh thanks for your comments. You are right about being so much on the internet. It's all so confusing and terrifying. I would love to chat , anytime . 😃😃 being hit by a train, that's a perfect way of putting it !

  • Feel free to DM me if you fancy a chat some time x

  • I remember when I was working, I found that drinking decaffeinated drinks helped to ease the reflux but there was one young girl who thought she knew better than me and would give me caffeinated drinks, saying it was a fad. I started to take my own flask into work so as not to go through the feeling of nausea and reflux every time she made a drink. Unless people suffer or who are close to a sufferer, nobody knows what we go through every day just wondering what to eat and drink that doesn't upset our systems. Other people think we are following a "fad". I always carry decaffeinated tea bags in my handbag and if I go anywhere I can always get a hot drink. Up to now nobody has charged me for supplying my own teabag. It has also helped some new cafes to start selling decaffeinated tea.

  • Hi TKDUBZ.. Anyhoo......what ails me is.... Reflux, Raynauds ,lung damage...COPD, Pulmonary Fibrosis, Bronchiecstasis, and swollen finger joints with swollen hands and joint pain on most joints.

    My breathing is very bad and I have to attend lung consultants [Mr. Tang] regularly to monitor my lung capacity....had to have chemotherapy earlier this year to try to halt further damage to my lungs which, so far, seems to be okay. I have to get regular heart checks as the systemic scleroderma I have can damage organs and get blood tests taken monthly as the medication I have to take just now needs to be closely watched in case it causes any harm to my kidneys etc. But, so far, not noticed much improvement. I am very limited in mobility because of existing osteoarthritis in my knees and hip and ankles....never rains but it pours, as the saying goes! So, I spend most of my time on the couch as walking is painful and I can barely reach the kitchen without holding on to furniture as I go...but when I get there I have a wee chair to sit on or I would fall over. ...Which I have done many times before...and ended up with fractures to my vertebrae which has caused nerve damage to my feet and left leg..numbness in both feet and left a wreck to be honest!

    The Raynauds is a funny one...I am freezing in the livingroom whilst hubby is he opens the windows or the back door to 'to let fresh air through' as I slowly turn purple with cold......have had to go into hospital with potential gangrene and receive an infusion to open the blood vessels up to my fingers which had gone black and were bursting at the tip...very odd and painful. Was hooked up to the drip for three days...not good! Am okay now but have to watch that I stay warm.......are your LISTENING HUBBY!!! :)

    There are the odd other things going I am exhausted just doing a simple thing like emptying the bin or throwing a duvet..which is a down duvet so very light to lift...onto the bed, which leaves me prone on top of it once I have finished making it for about half and hour to recover from that activity.......can hardly do the weeding in the garden without sitting down after just pulling one or two weeds! So flipping frustrating to do anything with breathlessness and burning up. So, there you go, this is some of what ails me....I have systemic sclerosis which my Rheumatologist consultant says is rare so my doctor is a bit lacking in information and that is why it took a while to find out what was wrong in the first doctor said to me that he felt that I had been 'let down' by them...but doctors are only human too and can't be expected to know everything so I was okay with that and told them so. I do have lovely doctors thank goodness.

  • Blimey O' Reilly! I need to read that all again a few times just to take that in. !!

    Poor you, it seems you really have been hit by that train. ... I can't imagine what you go through everyday . I am not half as bad as you at the moment.

    Perhaps if you lock your husband outside for a while he may get the message that you get cold easily .. Or stick his hands in the freezer for half an hour and tell him that's what it feels like after 30 seconds for you ! Lol..

    Seriously though, im so sorry for your pain and what you go through day in, day out. I hope you get the help you need , physically and emotionally xxx

  • Och....I love him really, its just that he can't understand that when I say that I am cold and he says 'its not cold in here' that it doesn't matter its how I feel! It just does not seem to occur to him how Raynauds can affect you ...I don't even understand it to be honest! I can run my hands [ouchy] under the hot water tap and they are still FREEZING ...very weird!

    Anyway, thank you for sympathies and empathising as I know the path is a long one and I have been told that the lung damage is irreversible so have to learn to live with that one. But, it is hard as I used to be so active in doing things and taking the woofs out for walkies and gardening etc...I did all the diy in the home and the decorating and painting...hubby used to complain about coming home to a different living room every day as I was always moving furniture around or painting things different colours.....oh dear, happy days! My brother used to call me 'the white tornado' ...[an old ad for a cleaning product years ago] as I was always whizzing about....hey ho!

    But, just have to learn my new capabilities and take it so much slower now. Hubby is also disabled ..not as much as myself but enough for me to be the 'carer' for him, so I just have to get on with it and, as I said before, just slower. You have to look to the future and hope that once you know exactly how this horrible illness is affecting you then you can adjust to a new regime and do things differently, you will learn what you can and cannot do as you go...just don't get too down or depressed because this won't help ....a good cry or a scream into a cushion does let out some stress I find, as long as you have good friends and family to support you then you will be okay. #

    Good luck going forward and remember you are not alone in all this. Best wishes pet.

  • U have a great attitude towards ur illness, i feel exactly the same!! Even the hubby part, where he opens the windows and doors to let fresh air in and im sitting here purple!! If u didnt laugh u would cry!! Gotta keep pushing on, dealing with this illness, every day throws up something new to face. Good luck and best wishes. Oneards and upwards. 😉

  • Hi Marilynmcl,

    Just wanted to say a huge thank you for writing this post. Until I came across it I thought no one else had my symptoms or at least most of them!

    I have only been diagnosed very recently with systemic scleroderma. Like you I have very limited mobility most days and sometimes none because the pain in my feet and joints are out with my control some days. I have hardly any “Kirby ends” left in my fingers with the result I have permanent dropsy and curled hands. My hair is so thin and still falling out, every joint in my body is agony and I’m finding it more and more difficult to eat because my jaw jumps and crunches every time it moves and the pain is unbearable I don’t want to eat most of the time. I have thread like deposits left in my mouth which makes me feel disgusting when they come out. The skin on my face and neck is all patchy where I’ve lost pigment so now I use embalmers make up if I manage to go out. When I’m not purple because I’m so cold my legs look like they have Post Mortem staining and I have a huge stripe of it from the level of my diaphragm to the level of my nipples.

    I can change from being constipated to having diahorrea like a flip of a switch and my fluid output can be any colour of the rainbow 🌈 I know what I want to say but the wrong words come out, my memory is so bad I have to write everything down and I struggle to keep up with folk because it’s so hard to keep at the same pace as others speaking without getting lost and confused 🤷‍♀️

    I was always on the go but now it takes me,over,2 hours to get dressed and that’s on a good day because I haven’t fallen asleep doing it! It is so hard to explain how the dizziness, nausea, cold sweats, fatigue, pain, dementia speech, immobility, couch slob and being complete insomniac makes you feel without feeling like a moaner 24/7 but no one can see this invisible time bomb inside me and how it makes me feel. I’m trying to be brave, hide the tears, put a smiley mask on and not scream at the top of my voice how much I hate having this but I wouldn’t have the energy to scream!!! Then there is the battle with a local gp who reckons I’m on too much medication and has decided to stop my sleeping tablets and will look into getting me off everything without my consultants knowledge!!!!!!!!!!!

    On the plus side ....... my heart was ok at the recent check I had but still to go back for more tests on it, my consultant is a specialist in scleroderma and will be thrilled to hear how helpful this locum gp is being (she has also refused to hand over my prescription for the next cocktail the consultant wanted me to,start 3 weeks ago) and I’ve found CBD which allows me to have an hour or two virtually pain free every week.

    Thank you so much again for your your post and hope tomorrow is a good day for you


  • Hi Leroy, I am so glad that my post has helped you and although things may be absolutely rubbish just now with your GP ...a lot of the doctors at practices are not completely knowledgeable about our illness so a lot of them are not sure how to treat us so this is where our consultant rheumatologists are the bizz! I think, as far as I know, that your gp would have to go with your consultant's diagnosis and prescribed treatment so make sure that you let yours know what is happening at your surgery so he/she can sort this out for you. Any changes to my prescribed tablets is done by my rheumatologist, Dr. Anna...she is lovely! and is passed onto my practice doctor without any bother at all thank goodness, but, make sure that your doctor is getting this information from him/her in case the message hasn't been delivered to your doc. sometimes things get lost!

    But, any problems with your doctor that are causing you concern should be addressed to the proper party...whoever that is in your health centre...or can you attend a different doctor? We have a few doctors in our practice..all are really nice and helpful, but if I went to one who I thought was not listening or helpful I think I would just go to a different one next time but I would put in a complaint and hope it would be dealt with. The very best to you pet and hope things get sorted for you. x

  • Hi Yes it's a terrible illness like everyone above says BUT you just have to keep going no matter what it throws at you. I have limited movement in my hands, legs, muscle pains, blisters,COPD , arthritis,coeliac and spots galore and can only drive about 20 miles in an automatic. Takes me 2 hours to get dressed in the morning, etc . The list goes on BUT I am keeping going . Ok I get depressed when I can't even walk up the stairs at night ( bum crawl up lol) and when a new symptom arrives BUT I am still alive and sort of kicking and I must say it may not be all doom and gloom for you. I just don't read internet stuff until I get a new symptom and just look up that as the stuff online could frighten you.

    Good luck , hang in there and enjoy the best bits of life.

    Best wishes Lynn X

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