Knew diagnosis

[Cwalton83]

Hi this is my first time on any forum, ive recently been diagnosed with, systemic sclerosis- probable or connective tissue disease overlap, i also suffer from Raynauds where i lost my right little finger because of it and to top it all off i suffer from severe bowel dysfunction because of this i keep losing so much weight even tho i eat loads!! All of that is a mouthful i no, and its so hard adjusting to life where im poorly all the time, some days i feel great and woth to kids i try and do so much with them on these days but then the next day i can litterly not get out of bed!! But i am so thankful that after 6 yrs of being so poorly in and out of hospital i finaly hav a diagnosis, im currently on treatment ive had 1 lot and ive seemed to responded well to, part of the treatment is chemo its not as strong as what they may use with cancer patients but it still is scary the word chemo is so scary to me 😥 i thought omg am i going to lose my hair luckly you dont but because of the steriods my hair has become thinner and every time i brush it bifs fall out, but im thankful that someone finaly believes me and i have a amazing family support, i will get my life back i hope but ive got to stay positive, sorry i no this is a long story just so nice to get it pff my chest, good luck everyone stay positive 🤞😊

[Mylreaclairelee]

Hang in there, there is such a thing with scleroderma as flares and remission. So hard when every day is different though. Glad to hear you have support. Xx

[Joanne_Evans030365]

Hi there. Chemo is not so bad. I had 8 bouts of it. It kinda helped me for about 3 months but everybody is different. What other tablets are you on?and what other symptoms are you plagued with. Take each day as it comes. If your too poorly 1 day don't worry, the next day is waiting for you. Keep your chin up x

[zenabb]

With people like us things happen in a cyclical way, sometimes good then better. Good wishes to you.

[Cwalton83 in reply to zenabb]

Thank u xx

[Maharlika]

Don’t be sorry, we’re here for each other. Whereabouts are you in the UK? I’m on immunosuppressant for 7 months. Although my hair is getting thinner but the meds are helping me. As I said, the community is here to give each other support, tea and sympathy if need be xx

[Cwalton83 in reply to Maharlika]

Hi yes I live in Ik where are u from? I’m sat waiting for treatment now takes 4-6 hrs so long day ahead, hope your feeling ok? Xx

[Maharlika in reply to Cwalton83]

Sorry couldn’t reply a lot sooner, we we’re not online for nearly 2 weeeks. how are you today? How did you get on with your treatment? I’m in East sussex x

[zenabb]

Remain positive. symptoms are cyclical - come and go.