support

[jt20]

i have seldelma and find it hard to cope with as am only 34 and am like an old woman and so stiff all the time and theres no support here where am from just need people to chat with that understand, that on the same page

[Bean82]

Hey jt20! I'm 34 (soooo close to 35!) and was diagnosed last year, so I think we must share some of the same aches, pains and frustrations.

Do you get good support from your doctors? I find it can be hard to explain to friends and family because so much of what I feel and go through is invisible to them.

I'd recommend having a look at the SRUK page and joining to get the newsletters, if you can. Keep talking on this page and remember two things (1) there are loads of us out here to talk to (2) embrace your inner granny! I've taken up knitting cause it helps my hands and have the most amazing pair of slippers to help cope with the Raynauds in my feet...very grandma-y but no attacks!!

Good luck and keep talking 😄

[Hidden in reply to Bean82]

I love Embrace your inner granny! She would like vests, hats, gloves and an electric blanket, and maybe a shawl...

[Bean82 in reply to Hidden]

Yep - I've been a mental age of 80 most of my life, so imagine my joy at having an excuse to sit under a blanket with a hot water bottle enjoying a Miss Marple on the TV 😏

[florr in reply to Hidden]

Electric blankets gave me wicked arthritus..

[foxglove in reply to Bean82]

Would you kindly tell me what the amazing slippers are? Thanks

[Bean82 in reply to foxglove]

Of course! They are men's slippers (always much better quality I find) and they are made by Totes. Good sole and tweed top. Plus they were in the sale 😄 The Brantano in our town has a massive closing down sale and I picked up slippers and some Hot Hands socks, gloves and hats at a massive bargain. Don't know if it's closing down nationally but recommend a look if you have a store close to you.

[jt20 in reply to Bean82]

hi bean 82 its great to hear from you there no aorund here that has my condicion am from the scotish borders small towns but its great to hrea from some one my age i have seleroderam bad in my hands and in my jaw and in my left foot but and just still working but i think i will have i give up soon as some days i cant move with the stiffness in my jonts how do you find your day to day tast bean 82 also did you lose lots of wegith with it as i did ?

[Bean82 in reply to jt20]

Hey. So my hands are pretty bad and certainly the bit that is affected the most. Luckily my boss is ace and I can adapt things at work...it doesn't sound like you have this luxury? I find work a god send in that it gives me something to focus on. That and a 10 month old puppy; I think the walking is great for mental health, which is reallly important to consider as part of this too.

Hand massages, hotwater, cradling cups of coffee are also good. A good rub of hand cream before bed and in the morning is also part of the routine - it's something I notice in my hand flexibility if I miss it.

No loss of weight - isn't it strange how this affects everyone differently?

Do you find some days worse than others? Any tips you've found in that work?

[jt20 in reply to Bean82]

hi bean 82 iv found not much thing help but warm thing do with the hands like you say but i do get day better than others but find it hard to ectcped the condicion as i was so fit before it got hold of me and like you people dont understand this

[bertreeed]

Hi, I don't know what seldelma is but we are here to offer advice, so you do have support here. I feel terrible also, and I go to the doctors and they have no answers. So, I am taking matters in my own hands. I am trying PEMF to see if that will help. I am thinking about getting it from a chiropractor, but I'm not sure. This therapy is suppose to be helpful, from what I been reading. I will be posting my results from time to time because I want the people on here to know about my progress. If there's anything you want to ask, please do so.

[nanagill]

Hi jt20 You're never alone once you've found this forum. It's like my own little world where people understand. We are all different here and yet the same. Try and stay positive and enjoy the things in life you can. Best wishes and keep smiling

[jt20]

hi nanagill how are you thanks for your reply wherer iam ther no support in the scotsis boaders but i do try but find hard as i work and i think there now trying to get rid of me coz of my sick time but i dont blaim them its been a hard road.. how do you find your condicion?

[nanagill]

I'm in Tyne and Wear. Never met anyone else with Scleroderma yet, that's why I love this forum. I was 'fit as a lop' till I was 50 (apart from asthma) then it went a bit pear shaped Was Diagnosed over 6yrs ago and at the time was not made aware of how serious it can be. Only found out through my own research. I count myself pretty lucky as I'm able to do most things that are required of me by my family. I just do them slower and try not to do too much in one day or I usually pay for it. School holidays just now so been looking after my 7yr old grandson. Been in the woods today pushing him on the tree swing and my shoulders and arms are paying the price already but it was great fun at the time

[jt20 in reply to nanagill]

yes i find that as well but am just 35 i just wish there was more i could do about as am so still sometimes and i losed lods of weigth with it i was 11,30 stone now am 9 and 5,11 so it dosent help and self steam isent all that great now but you have to keeping were about are you in tyne and wear?

[nanagill in reply to jt20]

I live on the edge of a village about 9 miles from Newcastle. You're so right about the self esteem. I must admit that having the countryside right outside my door is a godsend for me when things get me down. It's free therapy and the beauty is, if I'm feeling a bit poorly I don't need to walk far.

[mc_clean_david]

I'm 33 and was diagnosed last year - I do alot of cycling and am finding it hard now, as some days I'm flying other days my legs just won't work - stiff and heavy and cold. I got the Iloprost drip in November and it lasted me 6 weeks. Was up with my Rheumy 2 weeks ago as I was on Adalat 20 from Christmas and was getting a lot of cramps while cycling, so now I'm on Slozem which seems to be working better but still I get good days and bad days with no pattern. Very frustrating and depressing but I refuse to stop cycling!!

[florr]

I was on a midnight shift in my 30s and got fibromenalgy..after i left that employment i went away..but if i dont get enough sleep it can slowly come back....

[MilkMaid]

Hi, I was only diagnosed recently with Scleroderma and too have found it difficult to adjust, there isn't much support out there but luckily my local MS group have let me join them for physio once a week which really helps. Keeping as active as you can and lots of moisturising cream helps but it is difficult somedays not to be depressed. Take each day as it comes and try and stay positive.