I am new to this site. My mum has been diagnosed with diffuse systemic sclerosis. Her symptoms started with Raynauds in December 2016, it has now progressed to very severe SS in her feet, hands, limbs, skin across her joints, torso, face and hips.
She is struggling massively coming to terms with this condition, and so are the rest of the family. She is currently in a denial phase, refusing to know her limits and getting frustrated and upset with things she can no longer do. She keeps saying it is going to go and whilst I want her to be hopeful, from what I have read this is a life long chronic condition.
Does anyone have any suggestions on how they have dealt with living with scleroderma in the long term, as she is really struggling and emotional and I am at a loss as to how to help.
Thanks E xxxx
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ERosti
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I am sorry to hear ur story this is such a horrible situation to be in. My husband also suffers for over 15yrs now we have small children and it is so difficult to deal with what is happening to him and even more scarier as to what is to come.
I'm also in the same situation I find this site really helps for advice ect. But I am going to now try couniling maybe your mum could try that too I'm not sure what else can help but I hope u and family get through this the best u can x
When I had my diagnosis I spoke to my GP and asked for CBT to manage life stresses as stress is an accelerant and they offered counselling too- I took both. I learnt some general skills in respect of stress management and I came a long way in accepting the grieving over my health and stupid as it sounds, how to take care of myself/be kinder to myself and put my health first. Sounds obvious but for most health isn't no 1. I still struggle from time to time but I'm so much happier. I'd suggest you all ask your GP
I was a mess emotionally because of my illnesses and being diagnosed as "permanently totally disabled. " What had first appeared as a severe pain in my index finger led to over 21 surgeries and invasive procedures, including a total right-side thoracic sympathectomy. A very wise therapist told me it was more than appropriate to "grieve" the loss of my life as it once was because being chronically ill caused the "death" of my life as it had been for so many years. I had to accept the loss of the ability to do the physical activities I loved, such as snow skiing, water skiing, hiking, parasailing...all outdoor hobbies I was accustomed to doing. Once I was able to do that, I was also able to get unstuck and move on with an eye towards developing other interests and to take charge of my own health care by becoming much more proactive.
I always wanted to write and had been told by so many people that I should. I took what I had a talent for and moved forward making positive changes. I had to accept the losses but needed to develop the new activities that were somehow appearing seemingly out of no where. I started to blog about the things that I knew in hopes of helping myself. Those blogs became extremely cathartic and ultimately I learned they were also helpful to others in my shoes. If you are interested in reading about my journey towards re-independence my blog address that includes surviving the diagnosis of total disability, is elliottjle.wordpress.com.
I will take a look at this blog. I'm still grieving as it is very recent for me and the changes are happening very fast and l don't yet know if it is diffuse but think it is...So l know it's impacting on my family alot,too and my outdoor life . So many on these forums were previously sporty and so it's a big loss...
Hello there, I think that you have to let your Mum just go through the process in her own time. I know when I was first diagnosed I was so determined that it was not going to affect me that I did just as much, if not more, to prove to myself I could. I was resentful about having something that was going to stop me doing what I wanted, and being the type of person I wanted to be. I pushed on regardless. Until I couldn't! I came slap bang against the hard reality and some Consultant gave me a big wake up call with a rather sobering comment on lifespan. At that point I was very miserable, very very miserable. I did the treatments, I changed my life, I tried to work with what I had. I read a lot, I talked to a counsellor, I did a few courses, I applied a few things that I tell other people to do, to myself. It is working, it is never easy but psychologically I am in a better place. But, everyone has situations in life they have to deal with that test them to the limits and shake them up and give them a different perspective on life. Whether that is a chronic health condition, or any other trauma. You can fight reality, but reality always wins. You have to work with what you have and make the best of it and accept that you are going to feel miserable at times (and that is ok, and important to let that emotion out), that this is not a great deal in life, that sometimes you are going to be very unwell, and other times you can do more.
I have found that mindfulness, reiki, Qi gong, laughter, music, lots of tea and cake, afternoon naps, friends, family and work (albeit it very part time), have helped me. Learning to be kinder to myself and reducing my very high expectations has helped. I am much less self conscious about my appearance...getting older, wiser and having more humility (some times I have been more open with some people about my struggles. I have also gone to see counsellors to talk it out rather than my friends and family. Nothing is going to stop me having this, but by working with it differently, and with myself differently it is easier to deal with. If someone could give me a magic wand, or there was a new treatment out there I would still run to the front of the queue, but I have learnt a lot about myself. I have learnt I am much stronger than I thought, that some things matter much less than I thought, and that I can still keep learning new ways to do things, and to be in this life.
No one could do my journey for me...and you can't do it for your Mum. You can be there, you can listen, you can do practical things that she needs (in a quiet little way so she hardly knows she is being helped), you can leave literature around that might help...you can provide opportunities for discussion, you can go to appointments if she wants you there. But you can't be her, and you can't take it away from her. You can give her hugs and kisses and your shoulder to cry on. You can love her just the same and never make her feel that she is some invalid, or less of a person because of it. You can make sure that you include her in the same ways and ask her for advice and support so she knows she is still helpful to you and a valued member of the family.
It's going to be a rollercoaster for her and for you all...but it might have some unexpected benefits and joys along the way to accompany the pain and tears.
Wow Lucy, that totally hits the nail on the head. Fantastic advice. I too faught to begin with but have now found more peace with acceptance and self nurture. Mindfulness, CBT and talking therapy were a god send to me, more so than any drugs. Totally correct about letting this lady find her own way but for ERosti to always be open to support her mum. Well written. 😘😘
I have been grappling with the symptoms and puzzled looks since this time last year and had my diagnosis of Scleroderma end of July finally, so its all fairly new to me too.
Thankfully I have the limited type, so don't have too many issues internally, mainly hands, feet, face, back and esophagus. I found it quite harsh to be told that this will be my new situation in life, especially as I had no idea which type I had to start with (and no website will miss to tell you about the extreme variation you could die of). Although being generally a "let's cross that bridge when we come to it"-type (a lot of the time we tend to worry about stuff which isn't worth worrying about), it's still present in the back of ones mind somewhere... "What is going to happen with me and how will it affect my life quality?".
Both you and your Mum... take the days as they come and don't worry about what might (or might not) be. Stay positive and focus on the good things ("today I'm having quite a good day and I will enjoy it!)
There is always things better out there, but there are also plenty of things worse. Make peace with where you are. Denying and fighting it just makes it all the harder to bear. This doesn't mean giving up though! We still fight to make our life as best as we can, right? 😊
The biggest lesson in this kind of positive outlook on life I have received from my cousin and her family... the youngest of her 4 children was diagnosed with cancer and they rode a terrible rollercoaster for 7 years before the boy finally lost his battle. He wasn't even 10 years old! But their show of strength and optimism, their will to stay positive and enjoy every one of the good moments they had together as a family, created such a strong bond between them all and also kept so many friends in their lives (it's a hard situation to be in also for their friends, so not uncommon that people might turn away because they dont know how to deal with the situation).
Stay positive, fight on, enjoy the good days! There is various stages of getting such news... denial, anger... eventually acceptance.
Try to find out where your Mum is and support her in her journey. It is not your baggage to carry, but to let her know you are there to support her is the biggest support you can give her.
Try to find out about things that can make her life easier. Homeopathy, natural remedies (read up on turmeric, black pepper, cayenne, apple cider vinegar, etc.)
The fact that my partner sat down to research information for me that might help me was much more of a sign of love and care than that of one of my family members offering me financial support for private treatments. Investing some time and interest made me really feel loved and cared for! ❤
Good luck and lots of positive energies for your Mum and you! X
Thanks for all your helpful comments and support everyone, there is some really great advice in here ! xxx
One day at a Time, First started feeling the pain at 38, I stopped working at 46, Got the condition why in Service in United States Army. TCE contamination. I do what I can, but some days it is just a good day to Nap! But other days when I am better I make the most of it.
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I have been more open with some people about my struggles. I have also gone to see counsellors to talk it out rather than my friends and family. Nothing is going to stop me having this, but by working with it differently, and with myself differently it is easier to deal with. If someone could give me a magic wand, or there was a new treatment out there I would still run to the front of the queue, but I have learnt a lot about myself. I have learnt I am much stronger than I thought, that some things matter much less than I thought, and that I can still keep learning new ways to do things, and to be in this life.
Scleroderma and Bowel Issues.
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