Looking for information and support system
I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on cyclophosphamide and just finished a course of iloprost. I'm just looking for a support network as finding it hard at the moment.
Hi Donna, there are indeed lots of us here, remotely connecting on this site, supporting each other and sharing any information we have.
Thank you for replying Lucy, I've gone to join this site a few times and was never fully sure. To be honest I've spent a couple of months in self pity. Xxx
Hi Donna don’t worry when you are part of this group you are never alone. Being diagnosed with something so rare can be a very daunting experience at first. Like you I have the same strain of disease and I was so scared for the future. But being in here with all these lovely people made me realise that there is still so much to live for. Luckily I go to The Royal Free and get to meet loads of people with the disease and just talk about our experiences.
Whatever you need to ask, whatever you need to just get off your chest, feel free to just talk anytime.
Thank you Cole, you do have a feeling of loneliness at first don't you? Everything progressed so quick I barely have any movement in my hands anymore and have digital ulcers on almost every finger. The hardest thing I'm finding is not working anymore. I'm just trying to educate myself without scaring myself if that makes sense.
That’s exactly how you feel and it’s so much to take in. One moment your perfectly fine then in a matter of months your skin is tight and sore. You can’t believe where the life you had before has gone. Your life has suddenly become filled with non stop hospital appointments and tests and treatments. Then they mention chemotherapy and your first thought is this is really serious! But let me tell you as someone who knows what your going through take each day as it comes. On good days do something you enjoy. On bad days just rest and don’t feel guilty about resting. Some days the pain will be unbearable but other days barely anything. Don’t worry about how your feeling right now you need time to come to terms with your new life. But believe me the new life is not so bad. I’ve met so many people I otherwise wouldn’t of met. I’ve learnt to appreciate the small things. But I promise it does get better🤗.
Educate yourself indeed because no one will know your body better than you. You will find in certain situations you could end up being your own advocate. Watch for changes and make notes for future appointments. Even the smallest changes could be something but never feel alone because you are not alone.
I fully agree I'm finding it so hard as all I want is my life back, I feel like I'm being punished if that makes. I've had digital ulcers for the past 3 months and at times their unbearable. It's like your body is rejecting you if that makes sense
I run an Instagram group called @memyselfsclero - if you're on there, find me and give me a follow. Im always around to message and speak too xxx
Thank you, I am on there and I am already following as I've been trying to find out as much as I can xxx
Hi Donnalw72, welcome to SRUK, we are here to support each other through the good news and the not so good news, so anytime you want to get in touch we are here. Sending you hugs and keep smiling x
Thank you for your reply I appreciate it, I got to the point of needing to know where I could get support from people that understand xx
Hi Donna! Just a hello, and welcome! If ever your feeling alone come here and tell us, it’s this site that’s kept me going during my darker days xxx
Hello and thank you, hopefully I have found something now that can keep me going also, as I find it hard at the moment. Xxx
Hi Donnalw72, sorry to hear you’re struggling. You’ll get there. I was diagnosed in 2009 and at that point my ulcers were so bad the skin on my fingers would split from top to bottom like ripe tomatoes. The pain I can only liken to having them shut in a door. Iloprost didn’t really help me and neither did tramadol for the pain other than being spaced out. The vascular side has calmed right down now (snowfire ointment, rose water & tubular finger bandages helped me). I struggled with cyclophosphamide at first but it got better each time as your body gets used to it, especially if the pulses are further apart once your condition is under control. I take 2 different anti sickness for 3 days whether I feel quesy or not. As we say in Newcastle, chin up hinny. Don’t be beaten.
I understand about the digital ulcers as Ive had them for 3 months now. I finished a course of iloprost a few wks ago but their still bad. Just started to see a wound nurse this wk. The cyclophosphamide makes me quite sick for a few days after each burst and their thinking of keeping me on it for 12 months. I just feel my life has been turned upside down.
Right now that is exactly how you will feel because it’s such a shock to the system. I did 12 months of cyclophosphamide and your system will really begin to feel it after dose 6/7. Personally for myself I was great up until cycle 6. I had a gap of 2 months before the final 6 and that caused the disease to restart. Thus the final 6 treatments of cyclo ended up failing and the disease is as active as ever. I’m now on Rituximab for all the inflammation and my skin is now not as important as the inflammation and heart disease. So I pray that this treatment works for you because anything that works is something. But take everyday slowly and every piece of good news is great.
Hi Donna and welcome to the site. It's a great place to come when no one else knows what you're harpin' on about I've found it a great help in gathering information and reassurance. I hope it works for you too. As we say here in Geordie Land "gan canny"
Hi every onehas anyone talked to someone wif this diease face to face i never have only on Internet and has anyone features changed if u saw foto of me 6 years ago and now you wud think you were looking at 2 different people xx
Hi Daisydodo, In answer to your question, I have never met or talked to anyone with Scleroderma. It's over 7 years since I was diagnosed and thankfully my features haven't changed much apart from normal ageing xx
Thank you for your reply 😊I sometimes feel like I'm over reacting as I don't want people to feel like I'm moaning. I just feel everything happened so quick.
Hi Donnalw72, do you use Facebook? There is a group called scleroderma family UK which has daily activity and hundreds of members. If you live in Scotland we have a wee group called scleroderma support Scotland as we meet up occasionally. You may find someone who lives locally who you could meet for a coffee.
Donna I’m in the US and I realize I need a US site. But if you can afford it and have a skilled and accredited accupuncturist and TCM practitioner near you perhaps you can consider that.
We can underestimate ancient Chinese Medicine. I know in the USA it’s accepted so much that even Kaiser Permanente has a center.
Who knows - you may be very happy you gave it a go.
I’m sorry your suffering so. I’d like to see a study that compares these cases and type of care from the USA and UK.
These diseases are not at all taken seriously with my medical insurance. I’m in California.
And they wait until you come back with major symptoms and then you get on drugs for the rest of your life. I have a hard time believing that is the end game for all of us.
I’m personally starting a full TCM program. I’d like to see if it is successful or not. I’m 45 yrs old and resisting a life that is only downhill. If I can.......
You will be OK! One way or another. Keep surrounding yourself with people who understand and limit your time with toxic personalities.
Hi Donna you are welcome to give me a shout on here. You will find many of us to chat to on here. We all share the same kind of conditions. You are not alone on here. X
Hi Donna it is always a struggle adjusting to the new youx We are all in denial find it hard to be taken seriously but your not alonexx I had illoprost from 201 to 2017. It used to work for me I felt like I could be me was able to carry on at work until I had two bad reactions. I was gutted but a friend took me to a well being meeting and there they tried essential oils. Everyone is different .For me the helichrysium brought life back to my purple finger. Suddenly out of blue they bought me capsules and now 6months on still taking them. They are pricey but we do anything to get our life back. I still struggle with burning hands and feet etc . It is almost substitute for illoprost. Hope this helpsxx Your not alonex Also once a month I go for gentle reflexology which is also lymphatic drainage.
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