Sign in to follow this  
Followers 0
Lynnie

Hello, I'm new.

14 posts in this topic

Hi my name is Lynn,

I am 52 an ex nurse and have limited scleroderma,was diagnosed last October. I have a good general practitioner and rheumatologist, but the nature of this disease is very lonely and I feel isolated. I would love to make friends and share a chat with other people who are like me,who understand the issues that we face,and when someone says I know how you feel they actually do!!!!. I am very upbeat and positive be it scared too alot of the time haha! My main issues are my joints! I have very stiff hands, feet and elbows and Raynauds in my hands and feet thank you x

Share this post


Link to post
Share on other sites

Hello Lynnie, and Welcome to Sclero Forums. We are glad that you joined us and we hope that we can give you the most update and knowledgeable information. If you wish to chat many of us join in the chat rooms that are run on Wednesdays at 1 o'clock and Sundays at 9 pm. Asking questions is the best way for others to join in on your conversations and postings. I hope to be in contact with you again soon. I am just getting ready to open up the chat room for the evening.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Lynne

 

Welcome to the forum! This is a safe and friendly place to be for all things scleroderma and you'll find many people here doing the being positive/feeling the fear juggling act.

 

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

Hi Lynnie,

 

Welcome to this friendly and helpful forum. :bye:

 

Lynnie, I am also a UK sufferer and have Systemic Limited Sclero as well. My joints were also very painful before I was put on Prednisolone and like you I have Raynaud's particularly during this cold weather we've been having. :( Unfortunately my lungs have also been affected. I'm sure you will make lots of new friends here; many other members have been through similar problems to ours. Like you I also have a very positive attitude; not less because nobody wants to talk to a miserable person who is always moaning about how ill they are and most of my friends have now been bored witless listening to every minute detail of my condition!! :rolleyes: ;)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi joelf thanks so much for replying it was my birthday today, and you helped to make the day along with my friends and family really nice! It's strange but I've felt alot better knowing you and alot of others who are like us are out there in cyber land! And strangely, in a nice way its comforting, I've just been put on immune supress therapy for 6 months,and, strangely my stiffness is starting to ease a bit, but its early days yet. I'm lucky in the fact I have no skin hardening or internal organ involvement as yet,but the consultant wanted to prevent that if possible and ease my joints and my sausage-like swollen fingers. I have managed to avoid any white outs(affectionately named Raynauds!!) in my hands this awful winter by wearing my battery heated gloves, not exactly designer haha but have stopped it. I would recomend you get a pair as it makes life more comfortable. I have the details to order if you want them, let me know if you do. Okay they may help. Until next time take good care ok :VeryHappy:

Share this post


Link to post
Share on other sites

Hi I would like to join in the bi weekly chat rooms but....what time are they on in the UK? I am useless at gmt conversion! Iguess if you are in the states etc us british girls are in bed please send info re times thanks, lynnie

Share this post


Link to post
Share on other sites

Hi Lynnie

 

The Wednesday Chat is open at 7pm UK time; I usually forego 'Emmerdale' for the pleasure of joining in!! ;) The Sunday chat is open at 2am UK time because of the time difference; I'd love to join that one as well but unfortunately I'm not an insomniac and can't stay awake at that time!!! ;) :lol: :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

HI Lynnie. I am new too. I just got word that I have esophageal hypomotility, so it is looking more like CREST for me, rather than UCTD. I like your idea of heated gloves. This past week I really suffered, but decided to go ahead and wear my gloves at work. Everyone commented. I got one comment - Oh Cat in the hat. I guess with them being red and white stripes did call attention to it,but generally they were supportive. And it did really help.

 

I really identify with being scared. I am really hoping for the CREST diagnosis rather then the more diffuse type. I do not go back to my Rheumatologist until 3/23 so will have to wait until then to know about my pulmonary exam. They have not tested my kidneys yet, but maybe the blood work did not indicate any problems.

 

Anyway, welcome to the forum. I have found everyone very supportive.

Gale

Share this post


Link to post
Share on other sites

Hi Gale,

 

I hope so too! Although any type of this disease is awful, but, I guess if we can choose limited or crest as its known is better than the aggressive form. I never realised how much you need your hands and feet until you are acutely aware you've taken them for granted all your life because they won't do what you want haha. My disease hasn't attacked my organs as yet and hope that it doesn't for years to come. What I have got is quite enough!! Though heartburn and a sluggish gut is a pain, the main key is to be aware what sets you off and avoid it, such as stress and getting upset that goes for any of it makes the condition a whole lot worse. Hard when you wake and think what's the body going to torment me with today!! Please keep in touch how you go on and I'll be hoping things go okay for you and the rest of us!

 

Take care,

 

Lynn x

Share this post


Link to post
Share on other sites

Hi Lynn

My guess is that most of us do a body scan in the morning, thinking "How is everything today?" At least, I am hoping that is normal :unsure: . I usually start with my hands - stretching them, trying to get them moving as much as I can. I have had a couple of bouts of Iritis (inflammed iris), so my attention goes there next, "How's the eye today?" Anyway, I usually end up with my feet. I had alot of pain in my feet when things first started, but the Plaquenil seems to be helping with the aches.

 

I agree with you, when you have pain when ever you move it is hard not to focus on it and stress about it.

 

I have started to have trouble opening bottles and jars, so went on line looking for some assitive devices. There are a few that I might try out.

 

Take care, Gale

Share this post


Link to post
Share on other sites

Hi Lynnie!

 

Welcome to the Sclero Forums. So very glad you've joined us, but sorry it's due to CREST. I too have CREST and I'm also a nurse! At least we have ONE good thing in common. Sorry about your joint pain, I can certainly relate to that. I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Pam thanks for the welcome and you too. I'm still in the dark ages I guess my consultant wrote on my disability application limited too ha ha although either way the disease is awfully the same and I get so cross at IT but am chirpy must of the time take care talk again soon xx

Share this post


Link to post
Share on other sites

Hi Lynnie.

 

Welcome to the forum. I was diagnosed with limited scleroderma in November but the diagnosis was changed to diffuse in January.

 

I can really identify with wondering whats coming up next but have to say that as the weeks pass I am definitely feeling less frightened by everything.

 

Also I have a lovely local lady who is in her 80s and has had sclero for over 20 years and whilst her condition is not easy she lives!

 

Guess we just have to try and stay positive. :fairy:

Share this post


Link to post
Share on other sites

Hi Gale am taking the same drug to suppress my immune system as you. Afer starting them afer a week did you get any weird effects? About 6 days into the treatment my face got hot and tight as if I'd been in the cold and got wind chapped! I stopped the drugs for a day or so and it went away and my general practitioner suggested antihistimines, I haven't taken any. I've stated the drugs again to see if it happens again, any ideas? What was your experience with them please... take care lynn x

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