Systemic scleroderma and parenting young children

[Kylima]

Hi everyone. I haven't received my diagnosis yet but I'm sure I will when I see a rheumatologist in 2 weeks. I'm quite convinced I have systemic scleroderma though I don't have any skin thickening yet. I've been struggling since my daughter was born 7 months ago, primarily with aching joints, especially my hips, raynauds and sensitivity to the cold, fatigue, tingling all over my body, strange skin burning on my back, face and hands /wrists and the past week my hands are swelling and getting hot and tight at night which is disturbing my sleep. I am terrified. I was wondering if anyone could tell me what to expect in regards to my ability to parent my children poverty the next few years. I am absolutely terrified at the thought that I might not be here to see them grow up, but I'm hoping that won't be the case. I'm worried however that my ability to maintain the house, cook and clean will be impacted. Will I still be able to dress them and Bath them and take them on outings and play with them and provide all the care they need? I have a 3 year old and a 6 month old, who so desperately need their mum around for a long time yet.

Thank you.

[fairy56]

Hello Kylima, so sorry that you are experiencing such discomfort and worry. I am a great believer that until you know for certain any diagnosis, as difficult as it is, try not to worry and speculate. ( we can all let our thoughts run away down a worrying road) If the diagnosis is what you are expecting then you will be offered as much support as you may need, and please don"t be afraid to ask for it. I was diagnosed 6yrs ago, and although I don"t have young children to look after all day and everyday, I am a hands on nana ( I"m 62). As you will see from my previous posts I am having a wonderful time during these school holidays. It is all about resting when you can. This is a wonderful forum, to gain support and there is always the SRUK helpline. One last point, if you are diagnosed with Scleroderma, it really isn"t the worst thing. Please take care, thinking of you, xxxx

[Kylima in reply to fairy56]

Thank you so much for your reply. I did read it when you replied but my anxiety was just running away with me so I decided to do as you suggested and try not dwell on it until I knew for sure. I see the rheumatologist today and he things is fibromyalgia. I feel hesitant due to the positive ana and the similar symptoms but going to try accept his diagnosis for now and hopefully that is so that it is. I'm so glad you're enjoying being a nana to your grandies, I know my 2 get so much joy from their grandparents.

[Janedoe42]

Hi Kylima I was recently diagnosed with Scleroderma I have pain in my joints and thick skin on my upper arm which looks like a burn and bruising. I get pain in my joints elbows and knees and burning in my arms as well as aching. I have 4 children by youngest being 3yrs old and yes it is a struggle as I tire very quickly. Holding her hand is sometimes painful so v.difficult but I'm learning to cope I will be seeing a rheumatologist at the end of the month and hopefully a specialist soon so I know which form I have. But staying positive is key and trying not to let it get on top of you. It's only new to me and finding little groups to join and talk about it. Good luck.

[Kylima in reply to Janedoe42]

Thank you so much for your reply. Sorry its taken me so long to reply but my anxiety got too much. The dr today gave me a diagnosis of fibromyalgia and I'm hoping that is all that it is. You sound so positive and strong and I really admire you parenting 4 children with this disease. Sending you strength and positive thoughts.

[SarahHW]

Hi Kylima, sorry to her you are suffering and I can understand your worries. Early diagnosis is a very good thing if you do have scleroderma. I first noticed the symptoms of scleroderma after the birth of my son (he is now 11) when I was aged 31. Unfortunately I was miss diagnosed for 2 years with psoriatic arthritis and did deteriorate until eventually I was correctly diagnosed with systemic sclerosis and referred to a specialist. I have been on immunosuppressant medication since 2009. To be honest I did struggle initially when my son was a baby and young toddler changing nappies, dressing him, getting on the floor to play and sometimes holding him etc. but I learnt to adapt the way I did and still do things. My son understands that I am not well and can’t do all the things we would want to do but he knows no different. I ache and get tired but it’s important to rest when you can. Every person with scleroderma is individual and it affects everyone differently. Good luck with your appointment and try not to worry. Xx

[Kylima in reply to SarahHW]

Thank you so much for your reply. I received a fibromyalgia diagnosis today, but you give me how that even if it's an incorrect diagnosis that your son is now 11 and you are doing OK.

[Ncoff]

Hi I started to feel unwell soon after my daughter was born almost 4 years ago, it is a daily struggle but you go adjust. For me the tiredness and painful joints is the worst it’s so frustrating when she wants to play and I’m so exhausted. Luckily she has a good routine and understands mommy is tired. Hope you find something that works for you

[Kylima]

Thank you for your reply. I received a diagnosis of fibromyalgia today, so I'm hoping they are correct. I hope things ease for you.