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Happy Holidays and a Happy New year to all.


I wrote to you back in May and your help was very useful.


My husband is now progressively worse with diffuse scleroderma. He has had pneumonia six times this year, and is in and out of hospital continually. I have had to leave our business to provide round the clock care (most days) and move into a ground floor flat for mobility purposes. He now suffers severe dizziness, blackouts, debilitating headaches (which last for days at a time) and his mobility is very limited. He struggles to even wash up as leaning over the sink causes him great pain. The refluxing is worse often leaving him choking and after a bout of that he often says he feels like he was drowning. He swells from his toes up past his hips and cannot walk and the pain is horrendous.


Does anyone else suffer this? Steve also has lots of isolated red blotches over his arms and hands. He gets extremely hot, which makes his breathing and symptoms mentioned above escalate rapidly. His use of oxygen is daily and pretty much all day. I was told by the specialists he would be able to be 'maintained' yet I am looking at a man who is struggling to move off a sofa. I am at my wits end on what to do and how to make him more comfortable and terrified of what even the next few months hold.


Any suggestions would be greatly appreciated.



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So sorry your hubby is having such difficulty. Sometimes it's like that. I only wish him the best, and just try to breathe through it, and I've noticed the more I sit, the stiffer I get. So even with the pain, I try to move some. I know it's hard.


I can't even imagine what being a spouse of someone with this disease is like; I know it takes a lot of love and patience, and I am very lucky to have a wonderful man in my life who is a huge help to me. It's hard to see someone you love in so much pain.


Just give him gentle hugs, and remember you are not alone! We are here for you! I hope things look up this next year for you both! :emoticon-hug:



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Hi Danielle


I'm so sorry to read that your husband is feeling much worse.


You did tell us last May that your husband was on very strong pain killers and medication and I do wonder if that could be causing some of the problems that he's experiencing, as Scleroderma doesn't usually cause as much pain as you describe. Having said that, everyone seems to suffer with this bizarre disease differently and although I've had joint pains and shortage of breath, I've thankfully never had such acute pain and mobility problems as your poor husband.


Please bear in mind that I have no medical training, but as he seems to have deteriorated a lot since we last heard from you I would suggest that you contact The Royal Free Hospital as a matter of urgency and hopefully they should be able to advise you in more detail than I'm able to. I'm a patient there myself, so I know they have a phone number to contact a specialist nurse if you don't have an appointment in the near future and are feeling worried.


Do please post frequently and keep us informed of how your husband is feeling.

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Danielle


I am sorry to hear that things are still so difficult or your husband. I agree with Jo that you should put in a call to the specialist nurses at the Royal Free.


We tend to assume that scleroderma is the cause of everything but it may not be so it's better to get it checked out rather than to assume and try to manage yourself.


Please keep us informed and keep posting.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Danielle, I'm so sorry the situation has gotten so bad for your husband and you. I'd agree with the others about contacting his specialists as a matter of urgency. I would also recommend seeing if you could arrange for a regular visit by a nurse, both to assess his condition and to work out a good care plan to make him more comfortable.


Please take care of yourself too. I know that is easy to say, but giving such round the clock car is emotionally draining and physically hard. When you love someone, it is hard not to 'give your everything', leaving yourself with no reserves.


I'm sending warm hugs and wishes to you both,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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You have all my sympathy for your and your husband's difficulties. I can't say that I have much of anything to offer.


I have heard that reflux can cause pneumonia. But I feel very hesitant to offer any advice as you are probably doing anything that I know to mention.


This would certainly seem to be a time to get those doctors involved.

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Hi Danielle,


I'm truly sorry to hear that your hubby is having such a difficult time. Which means you're having a difficult time. Am I to assume you are keeping the sclero specialist up to date with how he's feeling? Are they not offering any help? I'm really sorry, my heart goes out to you, and here is a big hug! :emoticon-hug:

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Danielle,


I'm very sorry that your husband is so terribly sick. It must take incredible strength for both of you to face each day. I'm hoping you continue to let his medical team know how he is doing and focus their efforts on things that can be done to make your husband more comfortable. For example, perhaps more aggressive control of his heartburn, making sure that you are doing everything (raising the head of the bed, small meals, eliminating troublesome foods, staying upright after meals, not bending over) in addition to a rigid medication schedule. Make sure that his reflux meds are being taken as prescribed, whether it is on an empty stomach or with food, etc. and not along with any other meds (as the reflux meds can prevent absorption of other medications if taken within a few hours).


Since there is so much going on, try to focus on improving just one little thing at a time. Try introducing as much peacefulness into his day as possible, to help the healing process along, such as beautiful music instead of grating TV for a spell; an extra five minutes for a gentle backrub with his morning bath; invite a friend over to have tea with him for awhile and to give you some respite. Read a book to him that you both enjoy. Every soothing thing we do helps encourage the healing process, and he certainly has a lot of healing to do right now, to kick the pneumonia bugs for good!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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