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My girlfriend has scleroderma

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#1 martin82



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Posted 28 February 2008 - 02:55 PM

Hello everybody! I found this page today and I must say it is wonderful to finally have found a community where I can share my thoughts and problems with other people!

My girlfriend and I have been together for about 2 years. She got diagnosed with scleroderma about 1 year ago. She now has systemic diffuse scleroderma. It has affected her skin, mostly on torso and chest and her whole body is itching and she has alot of pain mostly in shoulders, legs, stommach and hips. It has also affected her lungs and she has problems eating. The doctor says she has a good prognosis because she is young (26) and got diagnosed quite early. She takes a bunch of medecines each day. steroids, E-vitamins, blood line widening medecine, allergy medecines, antiacid and an immunosupressant.

She feels bad alot. The pain seems to be the worst. She sleeps alot only to wake up in pain. Sometimes she throws up. Raynods is a big problem since we live in Sweden. The immunosupressant also makes her feel bad sometimes.

It all is very difficult for us now. Somedays she feels well only to wake up the next day and feel really really bad. And I don't know what to do. I try to help her as good as I can. The powerless feeling of not being able to help the woman I love is very hard.

Any suggestions? What do your partner do to make you feel better/happy?

sorry for the bad english.

Thank you!

#2 peanut


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Posted 28 February 2008 - 03:15 PM

How nice of you to inquire!
She has a good boy friend!
Itching is awful... Oatmeal based lotions help. If I shower every day my skin itches a ton so perhaps showering every 2-3 days might let her natural body oils moisturize her skin.
Can her doctors give her something for the pain and nausea? I know I take meds for nausea that definitely help. Too much throwing up is bad cause it can damage her esophagus and she might not be getting the nutrition she needs.

I think feeling powerless is the worst part. When I'm poorly I ask my husband to sit by me and hold my hand. Just having him near brings me comfort. Sometimes its the little things that help the most.

And flowers. Bring her pretty flowers.

Take care, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Susannah


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Posted 28 February 2008 - 08:52 PM

Hello Martin
Yes, it is indeed a lovely thing for you to feel so much for your girlfriend to seek help for her, and of course yourself. As a couple, we are very much in this together, we both feel everything that the other feels. My husband has been in your position too, and one thing I found for me to be important, is, for you to encourage her to talk about what she is going through and how she feels, but espcially for you to listen and do not feel you have to have all the answers. And seek the answers together. I quite often find my husband looking for information on the internet or reading the letters in this forum, so what you are doing here is wonderful. He is always there for me at doctors appointments and my regular hospital stays, he comes with me when I have to go by plane to another city for treatment, rubs the creams on my body at night (every night no matter how tired he feels), washes and brushes my hair, blow dries it and sometimes puts it into a ponytail (now that one is funny, I quite often have to take it out and get my daughter to do it hehe, at least he has a go! But to be fair, he is getting better the more he does it), and he does what he can as far as housework goes to ease my burden. All this doesn't mean he is perfect and he certainly has his days and wants or needs to get out himself away from it all, thats normal and you musnt feel bad for feeling that way, it goes with the territory. I invite you to get on this forum as often as you want, we are here to listen to you as well, it is a priviledge.
Peanut has given some great advice here, and I definately agree with the NOT so regular showers. I havnt tried oatmeal based creams , I didn't know this one, so will go look for some tomorrow, thx peanut.
Hope I havnt bored you with too much info and I hope you both find some relief soon.
Susannah x

#4 LisaBulman


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Posted 29 February 2008 - 02:36 AM

Welcome to the forums! It is so great that you have decided to join and seek help for your girlfriend. Being in your position is not easy. My husband has been in it for 15 years. He usually takes the brunt of my frustration but he is very helpful. We have two girls so when I am not well, he will take care of them and their activities as well as the house work. He is very understanding (most of the time) and lets me rest when I need to. The best thing you can do is exactly what you are doing. Get involved and be educated about this disease. Learn about her meds, what they are for and the possible side effects. If she will let you, you should go to her appointments with her so you can listen to the dr and ask questions.

You mentioned she will feel well then the next day feel really bad. This is tough to get a grip on because when I feel well I try to push my self to get everything done and do as much as I can, but I usually pay for it the next and feel exhausted. You might find this interesting :The Spoon Theory

We are all here to help and support! Please keep posting.

Lisa Bulman
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(Retired) ISN Sclero Forums Assistant Manager
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International Scleroderma Network (ISN)

#5 epasen


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Posted 29 February 2008 - 04:32 AM

Martin, it's great that you found us in here :) I live in Finland, and even that I'm almost 8 years younger than your gf, I've also been in a relationship with my boyfriend for two years now. I think the best way he can help me, is just to listen, to hold and try to understand when I'm not able to do something, when I feel tired or what ever. Since I live in northern Europe too, I really know how big problem Raynaud's can be.

I don't have any internal involvement for the time being, but I there are peridos when I'm in pain 247 for one or two weeks. During those times, what I would wish from my bf, would probably be just helping with daily things and mostly just being there.

I know how hard it can be for you for having to be worried about your gf. It's hard when there's nothing you can do, and it feels really frustraiting. Don't forget to talk about your worries and other problems with your gf. She still wants to hear about your life, so don't feel like you don't want to bother her with stuff that's in your head. :)

Best wishes,

#6 debonair susie

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Posted 29 February 2008 - 06:23 AM

Hi Martin,
How fortunate, for your girlfriend and you... to have each other. You did very well... in your message to us and the ladies here, have followed through with great hints for you.
As you know, when a loved one is going through pain, it's so hard because we feel so helpless... we all have been there and understand what you are feeling.

I'm only guessing... about your girlfriend's skin itching... when I was diagnosed, I also had the itching thing going on. Along with the suggestions you've been given, I was also reminded to use warm... not hot water when showering/bathing. Also, the nerve endings... just under my skin, were so sensitive, so that contributed to the itching/pain I had for quite some time... as a result, it was just something I toughed out, but I'm sure, if this plagues your girlfriend, there is something that can be done to alleviate the pain.

I can't add any more to what the ladies have already provided... that helps them during this difficult time. You sound like a very caring man and with your sensitivity, will do very well for the ladie that you love.
Please... keep us posted on how the two of you are doing, as this can't be easy for you, either... that we also understand.

Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Peggy


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Posted 29 February 2008 - 07:13 AM

I think you did the best thing you could do right here - and that is look for answers! You have to be congratulated for that. I just found out that I too have the diffuse systemic sclero and am in pain all of the time. I have had to quit my job and the daily life we once had is no more. My husband I think has been internalizing his worries and his pain of watching me in pain. I think the more the two of you can talk about how "BOTH" of you are doing the better you will be there for each other! Talk when you feel like it; and when you don't - just be there for each other. Any time you can do things for her that you may know causes her pain will always be appreciated. I wish my husband could cook because there are a lot of nights he is not eating because I'm too sick to cook so he's a cold cereal and toast kind of guy.

Visit this site often and ask anything you want. The people here are fantastic. Tell your girlfriend about this site too as she will find it very comforting.

I just printed out "the spoons" that I just found in your postings from someone else and found it perfect for me right now. So you see how your posting has helped others!!

Good luck and warm hugs.


#8 Sweet


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Posted 29 February 2008 - 10:28 AM

Martin, welcome!

...and aren't you a sweetie for caring enough that you have found us. I'm really sorry about your girlfriends scleroderma. I can only imagine what it must feel like for a loved one to have it. My husband hates to see me sick, I know how hard it is on him.

As far as what can you do for her? Be there, listen, let her know you care, don't belittle any little thing she is going through. Sometimes the littlest tasks can seem HUGE. Defend her to others, family members etc that just don't get it. Be her biggest fan!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#9 Susannah


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Posted 06 March 2008 - 08:12 PM

Hey Martin
Just been thinking about you both and wondered how you are getting on!
Hope its all good
Susannah x

#10 KarenL


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Posted 07 March 2008 - 03:34 AM

Hi Martin

What a sweetie you are to inquire about your lady. I can tell you, my husband is a lot like you in that he wants to help. It's a fine line between helping and hovering. I was always so independent, that sometimes it's hard for me to ask for help and hard to accept it. My best advice is to ask your lady what she needs help with and to back off if she seems to feel smothered. Ask her if she wants help or if she needs some space.

It really helps for my hubby to come to the doctor visits, as he takes notes and asks good questions. He also remembers things that I forget and can listen for me. Two heads are better than one.

Keep her warm! Especially when you want to be intimate. Be patient. With all of the meds and the fatigue and pain, it's hard to be in the mood for love. We discovered the wonderful world of electric blankets and it really helps. I usually start off in my "cocoon" as hubby calls it, but eventually I can stick out a leg, an arm and so on, till the heated blanket is up against my side to hug and warm me and hubby is on the other side. Turn up the heat in the bedroom before hand. No matter how warm you are she will always be cold, there's no need to say, "but it's 80 degrees in here!" It doesn't matter, if she's cold---she's cold. A hot bath, some nice scented oil rubbed on the sore shoulders, and patience go a long way toward a successful evening. Take your time!

We have a heated blanket on the couch where we watch Tv and another on our bed. I also have a scarf that heats up in the microwave, an automatic car starter was a lifesaver and a much appreciated gift. You can also shop for groceries with her and get all of the cold and frozen foods so she doesn't have to.

Those are just some of the things my amazing husband does for me. Good luck to you, you sound like a sensitive loving man. You guys will be fine!


#11 nan


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Posted 07 March 2008 - 08:50 AM

How wonderful you are to come here to get help. First of all I am so sorry that you and your girlfriend are having to go through this. Especially at such a young age. My husband is very supportive of me. He researches online. Sometimes I don't let him know how bad I feel because he is such a worrier, but he gets upset if I do that. Please take care of yourself and your precious girlfriend and keep on posting.