• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
dianehd

Welcome New Member Dianehd

12 posts in this topic

I have Sclerodermia, I would like to know what other people are going through so I am not alone, it is a very depressing desease and crippling, I would like someone to HELP me PLEASE, but life goes on and at least I am still alive :VeryHappy:

 

I have had two major neck operation, C4,5,6 and 7 are fused in my neck and I have a plate in my neck, due to this I could not work my nerosurgeon boarded me, as I was getting better at home I was diagnosed with scleroderma, it was a brutal shock to me as I have always been a very active person, after my neck ops I could not be that active so I took to walking briskly to still stay fit, not with this desease I am sometimes housebound and cannot do much of anything, due to all of this I became very depressed as I could not walk and due to the pain in my body. my family are vere surportive but they to not know what I am going through. My husband hates to see me cry but there really is nothing for him to do for me. I need someone to chat who has also been through this.

Share this post


Link to post
Share on other sites

Welcome to the Forums Diane! I'm sorry you have scleroderma, but very glad you found us. Don't ever feel alone - we are all here for each other. I hope you'll post often so we can get to know you.

 

Best Wishes,


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

Share this post


Link to post
Share on other sites

Hi Diane

Just want to say that there are lots of friendly people who are willing to listen and understand! There is also lots of information which you might very useful & if you can't find what you want just ask the question and someone is sure to be able to help you.

Take Care

 

Buttons

Share this post


Link to post
Share on other sites

Hi dianehd,

 

So sorry you feel so depressed and have so much pain at the moment, I cannot imagine the pain you are feeling but can relate to the depression. I think when you are first diagnosed with scleroderma, you start to search for answers and you discover all the different problems and symptoms it can create, that in itself can be very overwhelming. I remember feeling as if I was living under a very dark cloud waiting for the next part of me to go wrong, For the first six months or so I forgot how to laugh, didn't think there was much to laugh about and completely lost sight of the person I was and I really missed that person. But I am back with a vengeance, refusing to give in to this, enjoying all the simple things in life, grateful for the fact I can still clean the windows, climb the stairs, walk to work because I know to a lot of you out there, this is a problem. I never say why me, because why not, I would rather it was me than any one of my children. I can quite honestly say with acceptance of this disease and a positive attitude the dark cloud has lifted and I feel quite at peace with my lot Finding this site and all the special caring people on it has definitely lightened the load. I sincerely hope your dark cloud lifts soon and if not it may be worth talking about how you feel emotionally with your Doctor as he may be able to prescribe something for your depression or the pain you are in, your mental well being is just as important and your physical well being.

 

Take care my thoughts and best wishes are with you.

 

Sandy B

Share this post


Link to post
Share on other sites

Dianehd,

Yes, it is a daunting diagnosis. Do you know what kind of scleroderma you have? I have diffuse, so I have organ and skin involvement. I was diagnosed almost six years ago. Don't believe everything you read on the internet. It can be very scary. This is the best place for answers to your questions. Although none of us are medical experts everyone has actually experienced the disease and can help you. Post often and let us know how things are going. You may want to see a psychiatrist for help with your depression. There is no reason to suffer with it when there are medicines that can help.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Hi Dianehd Im sorry that you have/are feeling that way,it is difficult when life hits a blow+believe me its very hard to get your head around,but,up to this feb I was alone+felt very afraid+scared what the future held,but the lovely people on this site,who suffer in varing degrees like you and me have given me so much support+never dismiss a gripe or sad day when im scared.i know that the disease won't disappear+but having the time to come to terms with it and yourself is a big step but a very positive one,i personally enjoy each day as it comes,i dont ask for to much then im not let down!! see your dr if you find youre not coping+ask for help,its not a sign of failure but a cry for help which is braver than struggling each day

my warm thoughts are with you keep posting therell always someone to answer you remember YOU ARE NOT ALONE OK :emoticons-yes:

 

Lynn

Share this post


Link to post
Share on other sites

Hi Diane

 

Welcome to this very helpful and friendly forum. :bye:

 

I'm sorry to hear you've been diagnosed with Scleroderma but would reiterate what the other posters have said. There is always someone to listen and help you with any worries that you might have and as most of us are suffering with this bizarre disease you will find that there is a wealth of support and understanding on here. :emoticon-hug:

 

I look forward to reading your posts and getting to know you better. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thank you all for your suport, It is good to know there are others out there

My hips are now going, I had a cortisone injection about two weeks ago in my right hip

and it has helped a bit, I have had two operations on my feet for the pain, my right

foot in ok but the surgical cut on my left foot just won,t heal, I went back to the doctor

yesterday and he gave me a cortisone injection in my left hip and I have to go back

next Thursday for another operation on my foot as he says the cut is so very deep now it is

affecting the muscles under my foot (with terrible pain, whrn does pain stop)

 

I would like to hear from other sufferers who have this desease to find out what their

symtons are and what they do about it like will the pain in my legs ever go(weakness of the

muscles) so that I can walk again will the nerve pain running under my skin especially in

my arms go away and what can I do for the terrible itchness I experience on my sides and arms.

 

What do they do for the crippling in their fingers, so on

 

Please reply to me, maybe someone can help :emoticon-hug:

Share this post


Link to post
Share on other sites

Hi Diane,

 

Do you see a scleroderma expert? I'm no doctor, but I would be concerned that some of your symptoms are caused by something else. You seem to have had a lot of surgeries, but you haven't mentioned what made them necessary. I think most of us would first of all recommend seeing a scleroderma expert, and secondly, making sure all your doctors are working together to get you the best diagnosis and treatment.

 

Peripheral neuropathy is being treated these days, in my experience, with medications like gabapentin (an anti-seizure medication) or duloxetine (serotonin-noreepinephrine reuptake inhibitor) or tricyclic anti-depressants or selective serotonin reuptake inhibitors, so if peripheral neuropathy is the cause of your itching, perhaps your doctor will recommend one of those medications. However, many of us find that the itching can be lessened by keeping our skin well-moisturized, using creams designed to minimize itching, etc. We've got some information about Itching on our main site, which you can get to by clicking on the link (Itching).

 

You can read more about Sclerodactyly (Hand Involvement) here. I have a series of exercises I do every day for my hands, keep them well-moisturized, try not to expose them to temperature extremes (I also have Raynaud's), and in general do my absolute utmost to keep them limber and in good condition. While I don't have skin tightening, I do have very painful joints in my hands and it would be all to easy to skip the exercises and just let them stiffen up. We have an expression "Use it or Lose it" that pretty much sums it up.

 

I'm really sorry so much is landing on you all at once. There is a 'natural history' of scleroderma that seems to show that most new symptoms will occur within the first few years and then things will slow down and gradually get better.

 

Best wishes,


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

Share this post


Link to post
Share on other sites

Yes I do see an rheumatologist. My operations on my neck has nothing to do with the

disease; I had them before I was diagnosed with the disease. I have had lots of tests and that

was what I was diagnosed with, I have this pain just under my skin in the arms and they say it

is nerve pain, I am so confused now, I don't know what to do. I will let you know what meds I am

on. Yes I am on anti-depressants, talk to you later :thank-you:

Share this post


Link to post
Share on other sites

Hello Diane

 

Welcome to the forum and to the world of scleroderma! The beginning is the most difficult time because everything is new, painful and scarey. It does get better though and that's not just a platitude, you'll be amazed with what you can overcome and still have a good life.

 

I love what Sandy B said "I never say why me, because why not" good attitude and a good attitude works wonders.

 

Take care and keep posting.


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)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0