Dreamer

Systemic Sclerosis

20 posts in this topic

Hi everyone,

 

After scouring the internet in my country trying to find somebody to talk to about my illness I have came up against a brick wall. Very few people know about Systemic Sclerosis, all I get back is leaflets, when all I want to do is find people to talk to.

 

My husband died 2 years ago and a month after he died I was diagnosed with Systemic Sclerosis. Because of my lifelong history with arthritis I think it was hard for the doctors to diagnose. I have had 6 hip operations, 2 knee operations, and carpal hand surgery in both hands 5 years ago. It is a bit of a mystery illness, you don't seem to know exactly to what extent you have it. I recently changed doctors and the district nurses don't know anything about the illness and my G.P. knows very little about it.

 

My symptoms so far are very swollen hands, I have great difficulty turning a door knob, my skin on my hands keeps splitting and bleeding, one hand is bigger than the other, in July I had to go into hospital for an infusion as I had the equivalent to frostbite. They were going to remove my finger if the treatment didn't work. Thankfully it did, they put me on a drip for 5 hours a day for 5 days to open up my veins and it worked. They also send me for scans to check my internal organs, I have some of the dreaded red marks on my face, neck and hands. I have to wear gloves at all times even in bed, to keep heat in my hands, otherwise they are like dead fingers and go black. I get flare up of pain in the bones of my feet, some days I am fine and other days I can hardly put my feet on the ground. Nobody seems to tell me to what extent I have this illness.

 

The only way I get through it is forgetting about it and getting on with life as normal as I can. Sometimes that is hard to do, I don't want to worry my children and my grandchildren. I just focus on there are so many people worse than me. I am lucky enough to have seen my children grow up.

 

It would be nice to talk to someone that has this illness and we could share our experiences.

 

Thanks for listening.

 

Evelyn.

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Hello, Evelyn. Let me welcome you to the ISN Sclero Forums. I hope you will find us a friendly and helpful group. You will certainly find a ton of information about all aspects of the disease. I am also from the UK (Scotland) and we have several other British members scattered around. Have you seen the scleroderma specialists at the Royal Free Hospital in London? I see that you are already getting iloprost (I assume) infusions for assistance with your Raynaud's. Keeping it under control is one of the most important things, especially at this time of year. We have a live chat on two days. You can find the information in this link. Wednesday at 7pm in the UK is when many of the British members tend to show up together. I look forward to seeing you there if you can make it.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hello Evelyn,

 

I am sorry to hear from you. It is a terrible disease to have. I like the positive attitude of yours. I have a daughter who is 11 years old who has systemic scleroderma. I suffer more than her. It is basically a fault at immune system. Each ones symptoms are different from one another. Treatment has many protocols. I think best would be to see a rheumatologist who is able to guide you. Have a stress free life.

 

Best of luck.

 

M/O ASHU

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Hi Evelyn,

 

Welcome to the Forum. It's a wonderful place, lots of new friends who are incredibly supporting and understanding.

 

I'm sorry for all the troubles you've had and especially for the loss of your husband.

 

I noticed your mention of the pain in your feet. I had that very badly for a while. It turned out I was marginally 'adrenally insufficient' and when my levels returned to normal, the feet mostly stopped aching. It was horrible at it's worst. When I put weight on them, I wasn't sure if I'd be able to walk or not. So, just a thought to ask your doctor about. There's a test they can do called an ACTH challenge that will help them to know if that's what is going.

 

Best wishes and warm hugs,


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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Evelyn ~ WELCOME aboard! You will surely find many willing to talk and talk and talk. That's what we do here, share our good times and our bad times. There is lots of information that I'm sure will overwhelm you if you try to move too fast. Take your time, we are here for you!

Much love,

Nina (DE)

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Hi Evelyn,

 

Welcome and sorry you are dealing with so much. You really need a specialist and a few were mentioned here. I hope you can go see one. This disease requires alot of knowledge and still sometimes they just don't know what to do. It sounds as though you have been through alot of stress with your husband's illness and that worsens symptoms always. I hope the stress levels can come down. For myself, I would learn to do one thing a day that was not stress related even if it were deep breathing a few minutes. One of my favorite times is a cup of hot tea in the afternoon just watching the birds outside. I have a feeder. Good luck with finding the right help. Sometimes you have to search for good care and specialist but it is SO WORTH IT.

 

Susie54

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Hello Evelyn

 

Welcome to the forum and sorry that you have had to contend with grief and illness simotaneously.

 

Pain is part of sclero and waxes and wanes, I still have painful feet and at times dread the thought of standing up but it is better than in the beginning.

 

I don't know if you're connected with the Royal Free but they have sclero specialists there and every time I go I resist the temptation to call out in the waiting area "Mexican wave" so I can immediately spot the other sclero sufferers, they're the ones who can't get up or whose hands waved look like a clip from a Wallace and Gromit claymation.

 

The Scleroderma Society in the UK has various groups that meet throughout the UK and I host one. Log onto their website if you're interested or pm me for more info.

 

Who ever you stay in contact with staying in contact with other sclero sufferers is invaluable.

 

Take care.

 

Amanda

 

PS How did you find the Iloprost? I hated it!


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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Hi Evelyn

 

I also wanted to say hello and welcome. Sorry to hear you are having such a dreadful time...I agree, the stress compounds things terribly....so try hard to find that time a little at at time that Susie54 mentioned...it will help you. I also hope you get in to see a specialist soon...it's important with any disease to take care of it the best you can. Keep posting and ask lots of questions...someone here can always seem to help. Take care.


Sending good wishes your way!

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Hello Love, and welcome to the Sclero Forums.

 

You've come to the right place to find people that understand what you are going through, what you're feeling, and are capable of being the best support you've ever experienced.

 

I'm sorry about the loss of your husband in addition to all the physical symptoms you have to deal with. Post often, let us know you and welcome to the family.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi to everyone,

I am overwhelmed to the response you have all given me, up until now I have felt so alone. So far I haven't met anybody that has heard of this illness until now. At last I can talk about it without making people feel sorry for me, people that understand.

In answer to the question about Iloprost, that was awful. It did the trick and saved me from losing my finger, but made me violently sick. It gives you such a terrible headache that you can't lift your head off the pillow. My specialist said that whenever I need it done again I have just to phone him and he will arrange for me to come into hospital, I don't need to go through out-patient appointments. I am so lucky to have him he is a wonderful man.

As I am new to this site please be patient, don't know if I am getting it right. Speak to you all again soon.

Thinking about you all

Evelyn.

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Hi Evelyn

Just thought I'd welcome to you, everyone is friendly and very supportive and has Jefa mentioned we have the chat room on Wednesday evening. At least you know that you are not on your own and can ask questions which someone on the site would be able to answer or point you in the right direction to finding out the information you need.

 

Take Care

Jen

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Hi Evelyn,

 

Don't worry about getting it right! There is very little 'wrong'!

 

Your doctor sounds wonderful, and believe me, that's the one thing that really makes life easier for us.

 

Now don't laugh, when I was first diagnosed and still seeing lots of medical people who had no idea whatsover about the illness, I'd hand them a little info packet I'd made up. It explained what the illness was, what the symptoms were, possible/probable complications, web resources, and a "nursing care plan for scleroderma," since even knowing to put a hot, wet towel over the site where they want to draw blood or insert an IV can help. A couple of people laughed and probably never read it, but one doctor said "this is great, I'm going to depend on you to help educate me."

 

I laughed at Amanda's Mexican Wave. I look out for people blowing me kisses these days (pursed lip 'recovery' breathing) and y'know, I blow them one right back.

 

Jeannie


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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I wanted to send out a huge WELCOME. I too have the systemic sclero. I have Raynaud's but no where as terrible as you do. I'm so sorry you have to suffer so much with that. I know there are a lot of people here who have Raynaud's really bad and have different treatment methods that have been working for them. With my systemic sclero I have the reflux involvement, skin involvement, and terrible fatigue and muscle pain. I have found that this disease is ever-present and you just have to try and stay on top of things. You sound like you have a wonderful doctor and that is huge. It has to be someone who is very familiar with this disease and stays on top of things. You have also found a wonderful forum here to go to when you need support, need answers to questions, or just need to vent. I wish you all the best.

 

Warm hugs,

 

Peggy

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I must thank you all for your replies on this subject. Give me time and I will get back to you all, new to this site and still trying to get to grips with it. Would love to talk on Wednesday, will do my best.

Love to you all

Evelyn.

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Jeannie,

 

I'm wondering what the warm towel does for taking blood and inserting an IV. I had a cat scan done today and they kept poking to get the IV in and then ended up going to another part of my arm. They said my veins were very small. Is this what you may be taking about or are you talking about the hardening of the skin? I'm rather new with scleroderma and still trying to learn what I can.


Gigi08

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