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Scleroderma


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#1 jaxs

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Posted 12 August 2007 - 12:52 AM

hi there. ive not posted snce last year when first was diagnosed with limited systemiic sclerosis, didn't have a clue what my doctor was talking about, a year on I'm still hopeing that my doctor has made a big mistake and he will gve me some pills say here take them tomorrow u will be ok haha if only eh......... im from the uk , im now spending my days n bed my legs are achen and my arms and body are in so much pain , I can't walk far as the pains are bad, I have a bad head ache for weeks now its effecting the back of my neck and it feels like my head is being bent over to my chest, im always feeling sick and can't swallow my food propely am on tablets for my heartburn wich are lansoprazole and works wonders I am suffering from depression badly ...at times it feels like im loseing my mind I forget even the most simlpe things ..like turnng on the kettle I dont know how too.....i often feel dizzy and very lifeless, out of breath even tho I dont do alot im tired all the time, and ive hade a dry cough for the last 2/3 years....ve just found out I have a first cousin with the same illness as myself but she is much worse off than me, on oxgyen and is very poorly, every day's the same for me altho I do have gd days a very few but I look forward to haveng them......i feel so alone with the condition as feel no one understands me at all ofen think people must think im lazy hmmmmm as theres no physical symtoms so I understand why people think that,,, well I hope u guys dont think im here to moan but I feel need to vent sometimes at times I feel angry and often think why me ....................jaxsxx thanks for your time and energy to read this <_<
live life for today and not for tomorrow

#2 WestCoast1

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Posted 12 August 2007 - 07:03 AM

jaxs,
I am glad that you posted. This is a great place to vent because we can all understand where you are coming from. It is awful that this illness isnt visable to others. On the other hand if we looked as bad as we feel, we might not be singing that same tune.

I knew a lady a long time ago who was in the later stages of a very aggressive Scleroderma and she looked great, but on the inside she felt awful. I didn't know a thing about scleroderma and remember seeing the fatigue and pain in her eyes. She tried to explain to me about scleroderma, why her skin was taught and tan and her stomach was distended....but I really never "got it". It wasn't untill she was connected to a wheel chair and breathing machine that I really understood what kind of pain she had been in all year. She was the strongest and most positive person I think that I have ever met.

I believe that we were meant to meet. Her great attitude and smile are going to be with me forever.
*WestCoast*

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#3 WestCoast1

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Posted 12 August 2007 - 07:23 AM

jaxs,
http://www.sclero.or...html#depression

This link from the ISN might be helpful.
HUGS &
*WestCoast*

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#4 lizzie

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Posted 12 August 2007 - 11:14 AM

Hi Jax, I'm sorry you'e having such a bad time at the moment. You sound like you are in a bit of a vicious cycle with the pain and the depression, you really do need some help. Have you spoken to your G.P about how you are feeling ? I don't know whether you are being prescribed anything for pain or for the depression at the moment? . if you are you certainly need a medication review to see if some othr combination of medication would work better - you shouldn't have to feel the way you do. I don't know which part of the UK you are living in , but many hospitals have a rheumatology help line - is there one at the hospital you attend?
If so perhaps you could contact them and tell them about how you feel at the moment. Have you considered talking to a clinical psychologist?- it could be helpful for you to have someone to talk with about your feelings about scleroderma and life in general- you could ask your G.P or rheumatologist if it woud be possible to be referred.

I know that when you are in pain and depressed it is very hard to find the energy to seek help- but do please try and contact someone - you do not have to feel the way you are at the moment.
thinking of you
Lizzie

#5 janey

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Posted 12 August 2007 - 11:22 AM

Jaxs Darlin',
You are not alone! I'm so glad you came back and posted. Sounds like you need to be here right now and get some (((((((((big hugs)))))))))))) from your friends. We understand what you are going through. It's hard looking healthy and feeling horrible. How do you explain it? People just don't understand. That's something that we eventually need to accept so we can move on.

What is your doctor doing to help you out? Are you getting the proper tests to make sure something else isn't going on causing some of the pain and fatigue? Please work closely with your doctor to address your issues. Don't give up and think there is nothing he can do. There is always something that can be done. Keep pushing for some help.

I'm so glad to see you posting again!!!

Big, big Hugs to you,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 Sweet

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Posted 13 August 2007 - 04:34 PM

Hi Jaxs,

It's so nice to hear from you again. Hon, I am so sorry you are having such a hard time. You have come to the right place though to vent your feelings, because we do understand how you feel. It can be very lonely when you are amongst people that just don't get it.

What are your doctors doing or saying about your current condition? Seems there must be something they can do at this point to improve your quality of life. Ring them up and see what they say.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 jefa

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Posted 13 August 2007 - 10:33 PM

Hello, Jaxs. Glad to see you posting again. I am so sorry this is all getting to you so badly. Erin gave you a good link on emotional adjustment. Please give it a look. During the first two years of my illness I resisted the suggestions by my doctors to try an antidepressant. I guess a part of me thought they were saying it was all in my mind. After breaking into tears one day in my doctor's office, I decided maybe it was time. He prescribed fluoxetine, an SSRI (selective serotonin reuptake inhibitor). It took a week or two to kick in and get used to the mild side effects (for me, anyway). The effect on my ability to cope was impressive. Are you taking some sort of anti-inflammatory for your pain? Work with your doctor on this. Are you seeing a rheumatologist? As for having no physical symptoms, it sounds like you are having quite a few. Please do get in touch with your general practitioner as soon as possible and get a thorough checkup.
Warm wishes,
Jefa

Carrie Maddoux
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