Seeking friendship with fellow Scleroderma sufferers

Hi all

I have recently become a member of the forum and this is my first post, essentially seeking friendship amongst fellow members.

I was diagnosed with general Scleroderma and Raynaud’s in 2008 at the age 44 (I am now 50) and it has since affected my heart and lungs. I am seeing the wonderful specialist team at the Royal Free, London on a regular basis and the treatment they have prescribed has actually improved my heart and lung conditions whereby I am so much better than I was 3 years ago when I was in both heart and lung failure. Having been off work for 18 months I have now been back on a part-time basis for a further 18 months.

I am so relieved to have improved and my lifestyle is far better than I would have expected but I am now left feeling lonely and isolated. I have wonderful support from my family and friends but I am not sure if they understand my day-to-day problems having seen me so ‘ill’.

I am lucky to be able to move about and exercise within the limitations of my lung fibrosis but I feel other people expect me to be able to do more. I find housework exhausting; walking in anything under 10 degrees Celsius is a challenge on the lungs; I am losing my teeth due to the Scleroderma, they would appear to be being ‘pushed out’ of the gums; I am losing control of my bowels and have had many accidents without noticing!

I feel terribly self-indulgent even putting this on paper as I am the type of person to give myself a kick up the bum when things get to me but I am increasingly feeling isolated.

Wishing you all the very best

Dee

13 Replies

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  • Hi Dee

    Firstly, congratulations on all the progress you've made - that's an amazing story so far youre inspirational :)

    I hope you'll find some friendship and connection on here :) I think that's what we are all here for.

    It is really hard with chronic illness because people initially understand but naturally assume you should get better but that's not what chronic means sadly. It's natural for them to think that and it's not conscious I don't think but the person suffering doesn't want to whine or repeatedly remind people because they want to get on with life too and not be identified by their disease, but you'd hope you'd only have to tell someone once. I think it's a sadness and frustration a lot of people can associate with. I'm not sure what the answer is

    Greetings from Bristol :) Bear x

  • Hi Bear, thank you for your response and for your kind words. You have hit the nail on the head, you are right, I don't want to be identified by my disease and I think I am guilty of thinking people are judging me for what I don't do rather than what I can - It's all in my head of course!!! I hope all is well for you Dee x

  • Hi Dee

    I hope this message finds you on a good day. I am 45 and have systems scleroderma involving my lungs, liver and gastro system in its entirety. I have also had accidents! I haven't even told my husband although he knows when i need to go i need to go. Following my liver 'joining in' the general party i too have left work. I was exhausted and fighting a losing battle to be as fit and healthy as I could be...this is what i am now concentrating on. I have 3 children all girls who keep me motivated and a loving husband, thankfully.

    I cannot walk in the cold either. The air burns my lungs and my hands and feet are like blocks of ice. I was taking fluoxetine for anxiety and for Raynauds which really controlled the circulation, however, i have come off it on the instructions of my hepatologist at the Royal Free in an effort to lose weight around my middle and therefore my liver (i have been on steroids for 11 years) and I feel a lot more energised. I go to the Royal Free for liver, gastro and scleroderma clinic and i go to the Royal Brompton for my lungs. Both teams are fantastic and have kept me alive so far!!!

    There is tha annual conference in July for the scleroderma society in the atrium at The Royal Free and it is a great way to meet people and share their experiences. It is free to members and there is lunch provided. There is also a question and answer session which believe will be hosted by Prof Chris Denton this year. The society's newsletter is also full of interesting information and contact groups in local areas which you may find useful.

    I hope to attend the conference this year, perhaps we could meet.

    Best wishes H

  • Hi H

    Thank you also for your reply and yes it is a good day thank you :)

    Do you have oesophageal reflux too? I was having problems regurgitating (or being sick as I prefer to call it) several times a day and night but have now got it under control with Domperidone and by doubling up my dose of Omeprazole to 40mg twice a day. It’s fun at bedtime, I feel like the Princess & the pea when I lean down from my wedge and three pillows to kiss my husband goodnight! Laugh you may, bit it works.

    How does your liver damage affect you? It’s such a shame you have had to leave work but I am sure the family keep you busy enough.

    I can relate to the hands and feet being like blocks of ice and although I have found silver gloves and hand warmers a great help (hot water bottles when in the house) I have yet to find anything to help my feet. Have you found a solution yet? I still take Fluoxetine for Raynauds and as yet my liver seems ok so hopefully will remain on it for a while longer.

    I carry a lot of excess weight but can’t blame the steroids! I am finding it more difficult the less mobile I am. I have today picked up an application form for a local Gym with a view to trying exercise with someone qualified in the room. Walking is the alternative once it gets warmer in the summer (assuming we are going to have one).

    I am aware of the conference in July and am seriously considering attending this year. It is always a bit of a quandary because the cost of travel is so high. I fly over to Gatwick from Guernsey, then take a train to London Victoria followed by a taxi to the Royal Free. Hubby is trying to convince me. I must admit since reading your email, I am very excited and will look into the costs tonight and look out the booking form :). If I come over, I would love to meet up. I am sure there will be others on this site who will be attending too.

    I find the newsletter very informative and interesting and always look forward to the next publication. Guernsey has a population of 65,000 and as far as I am aware, I am only one of two people in the island that have been diagnosed with Scleroderma! Proof that we are very ‘special’ people.

    It's great to talk, thank you again for your reply.

    Dee x

  • I'll be there :) it's just up the road from me I've already booked off work

    :) I'm nervous but excited too :)

  • I have also now booked a place, booked flights and booked accommodation at The Premier Inn :) Also feeling both nervous and excited :)

  • Hi Dee

    So glad you are coming to the conference hope to see you there . I was in Guernsey for a few days recently borrowed my neighbours time share at Grand Marche first time I have visited absolutely loved it and Herm too . Will go back again and do some more sightseeing inc Sark and Aldenay. Hope you make lots of friends to keep in touch with at the conference .

  • I'm glad you enjoyed your visit to Guernsey, the weather must have been ok :). Please don't hesitate to contact me when you visit again, I will be happy to give you any recommendations. I love both Sark and Alderney but haven't been to either for a few years, you know what they say about not seeing what is underneath your nose!

    I am looking forward to the conference.

    Dee

  • Hi Dee

    Sorry it has taken so long to reply to this...i couldn't work out how to see the rest of the message and it seemed so simple when my 12 year old showed me.

    I do have terrible oesophageal reflux and have volunteered for some research tests at The Royal Brompton and Royal Free. They are a bit invasive but if they help anyone else or even me all to the good. I was recently prescribed coedine for hip pain and after 7 days of the worst heart burn despite the bed on bricks and 3 pillows i decided at 1am to start researching the causes and cures of acid reflux and every subject related. It was a very interesting few hours despite being exhausted I just had to stay up because of the pain!!

    On one page it said review your meds so I searched does codeine cause reflux and guess what it does...the leaflet did not mention it but there it was. I knocked it on the head and things are much better thank goodness. I take lanzaprozole 30mg twice a day and Ranitadine 300mg twice a day and still watch what I eat and drink and when.

    I came off the fluoxetine because my herpetologist said it can contribute towards weight gain and since I came off it i have had much more energy and am sleeping better at night and not at all during the day...i wish i had come off it sooner although walking round today my feet have been cold sand painful.

    I don't think i can blame the steroids only for my weight gain but as it has affected my liver i am determined to lose weight . I am a member of a gym but i am not the most committed member lol. I get breathless, my hip hurts so i cannot run or do the breaststroke(frog legs are not good for it). My Dr said swim the crawl, i told him i couldn't as i can't do that stroke or I drown...so i am a bit limited. Still I have now lost 9lbs with slimming world and I know this will help my mobility and ability to exercise and will also help my lung function in the long term so all to the good.

    I am sorry to say that I can no longer attend the conference in July because it is the only week my husband can get off during the school holidays so we will be on our holidays in sunny spain...sorry once again. My Grandad used to live in Guernsey so as a child i visited quite often. My favourite place was the shell church. I visited again when a friend married there (she lives there now and is an islander) that chapel seemed so much smaller!!!!

    Please take care and keep positive it really does help.

    I will contact you again soon but am away from now at my Mums for half term.

    All the best Helen

  • I think you are all truly amazing! Thank you for sharing x

  • Hi Dee I was diagnosed in 2012 and I too am going to the royal free.I fully understand how you are feeling I too have lung fibrosis ,bowel problems and have had a triple heart bypass. I have been on a clinical trial and its coming to an end , I am scared to come off it as I have been so good on it. What medication are you on at the moment?

  • Hi Dee, My name is Anne and i have had Scleroderma and Raynaurd's beginning of 2011. at the moment my Scleroderma is stable but the Raynauard's is not so good . Fortunately i have had very good care from my consultant and i attend the London Free Hospital and they are just wonderful very helpful and friendly. I am now retired which has made a big improvement to my life although i still like to keep busy but when i am tired i just take myself to bed and rest . When i hear of other people suffering much more than i do i think how very lucky i am. Please excuse my grammar and spelling but if i let my self worry over it i wouldn't be emailing you, and they say stress is no good for us.

    keep positive all the best Anne

  • Hi Anne, thank you very much for getting in touch. I am sorry to hear you are having a bad time with Raynaud's. How does it affect you? Do you have ulcers? What do you do to keep warm? I am very lucky that so far my Raynaud's is manageable and I think it may be down to the fact that I take a daily dose of Fluoxetine which helps to open up the blood vessels and therefore aid circulation. I understand the theory is to keep your core body temperature warmer than normal but I find that difficult because I then get claustrophobic. I do find silver gloves very useful and my biggest eureka moment was fitting a fluffy steering wheel cover! I'm not sure how to overcome the blue nose though ha ha.

    Take care

    Dee

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