Scleroderma Sufferer.

[Roselda]

I am 66 years old and have had scleroderma for 2 years but only been diagnosed for 6 months. I live alone and also am looking after not only myself but also my elderly parents who are in their 90's. I only get to see my rheumy every 4 months who gives me medication to take but does not have time to answer my questions. I am currently taking methotrexate and sulfasalazine. My doctor hasn't heard of scleroderma so cannot help me and says I must speak to the consultant. I am scared, in pain and so very tired and depressed. I haven't had a decent nights sleep in 2 years as I am suffering from insomnia. Has anyone any advice - I would be so very grateful.

[MEW53]

I can sympathise with you as I was diagnosed with Scleroderma 3 years ago, I’m lucky that my GP knows about the disease.

It may be worth calling your rheumatologist’s secretary who may be able to help and try and get you an earlier appt, explaining your worries and family situation.

When first diagnosed my rheumatologist gave me some telephone numbers of some specialist nurses at the hospital that I could call if I was worried and I did call them a few times, they were very helpful.

I too suffer with insomnia, but it varies, in the beginning I couldn’t sleep much at nigh but seemed to sleep more in the day.

It may be worth having a look online if you are able to do it and look up Arthritis Research who have some very helpful booklets available :

athritisresearchuk.org

Tel: [phone]

There is also a Scleroderma helpline where you can talk to people who man the service that have the disease, I’ll look into it.

Sounds like you have a lot on your plate and need some time to think about yourself, looking after elderly parents is not easy and can be very tiring.

I’ve been there too, my sister has Multiple Sclerosis and needs help so I try and help her but I’m not able to do much, just a weekly visit to check on her. Is there anyone else that can help sometimes with your parents?

Keep smiling😀

[Roselda in reply to MEW53]

Dear Mew53,

Thank you for your reply. I have tried asking my rheumy for someone I can call in his department and all I get told is 'call my secretary.' When I do she's never there. I have called 111 one week end when I was in so much pain and they did'nt want to know. I will phone the number you gave me (thank you) and see what they advise. I have had to push and push to get tests done prior to my condition they all took almost a year before diagnosis and I am exhausted with having to sort things out for myself because hospital staff have either forgotten my referral or the doctor hasn't marked it urgent. I am determined to carry on the best I can and not give up but some days are harder than others. I am the only one in the family who can look after my parents and I'm looking forward to Christmas - it is just the three of us. This is an awfully debilitating condition which takes too long to diagnose and get treatment in time.

I wish you the best and I hope you have a wonderful Christmas. Roselda

[Wengc in reply to Roselda]

Hello Roselda,

View used the SRUK helpline in the past, their number is 0800 3112756 -they were very helpful. There is a lot of information about the disease on the website as well. I know how frustrating and exhausting it is dealing with doctors especially as you have carer responsibilities but it is important to try and get some rest and to pace yourself. Does your local authority have any sort of support where someone could come in and take care of your parents to give you an hour or two off a week? ? It's hard having to fight for all of this but my experience has been that it is up to us to do it. You'll find lots of support and info on this site as well - it helps to know you aren't alone.

Best wishes, Wendy

[Wengc in reply to Wengc]

Sorry...predictive text, that should read I've used......

[Roselda in reply to Wengc]

Hello Wendy, thanks for your reply. I have called sruk and they are very kind and supportive but understandably they cannot help on medical advise. My rheumy has a professional membership with sruk so I believe that he is well informed on scleroderma. I can get help with my parents but it all depends on money - no money, no help. Even thelocal authority are financially stretched - or so they say. Today, so far, is a good day - I intend to make the most of it. Thank you for taking the time to respond. I wish you well. Roselda

[AnnieMc]

Hi there, I am also 66 yrs old and live alone, it must be very difficult for you to look after your parents, when i'm sure sometimes you feel as if you can't even look after yourself. I have had scleroderma for 12 yrs and learnt to live with it, taking each day as it comes, I must admit the last couple of years have not been that great. This disease affects everyone differently and to varying degrees. Your rheumatologist doesn't sound that good if he/she won't answer your questions, maybe you could ask to be referred to one of the hospitals, like the Royal Free who have specialist Scleroderma consultants. I don't take either of the medications you are on, but if you are feeling the way you do, maybe they need changing to cope with your symptoms. Wishing you well and hope you get some answers.

[Roselda]

Hello AnnieMc,

Thank you for your reply. I have asked my rheumy for a referral to the Royal Free hospital and he tells that the RFh is only when the condition gets really serious so he won't be referring me - yet. I understand that we are all different in our symptoms - I have tight skin on my lower thighs down to my toes and cannot properly bend my ankles and knees, also my lower arms to my fingers. (fortunately i do not have reynauds) and bowel problems. We don't need this condition at or age do we.

Keep smiling and take care. Roselda.

[AnnieMc in reply to Roselda]

Hello again, just want to say I think you have enough going on, without your Rheumatologist refusing to refer you until you get worse, that's just ludicrous . I think he should make the referral anyway as it could take months to get an appointment, but you really should be in the 'system'. I was referred to Royal Free from the onset, and their expertise is invaluable. I agree no one deserves this, and I've actually forgotten the last time I felt anywhere near well. Take care of you.

[rosella24 in reply to Roselda]

I cannot understand why you cannot be referred to the Royal Free NOW. The earlier you see the terrific team there, thee easier your symptoms will be to control and live with. That is rubbish to say the Royal Free is only for when the condition gets serious! I would push very hard to be referred ASAP!! You could always phone the Royal Free Scleroderma Helpline and chat to the very highly qualified people there. I wish you luck, just push hard for that referral. Xxx

[Roselda in reply to rosella24]

Hi Rosella24, thank you for your reply. I will certainly give the Royal Free a ring and see if they can give me some advice. I was under the impression that they needed a referral beforehand. I had already looked at their website and it said nothing about calling for advice but I will give it a go. Take care. Roselda

[nanagill]

Hi Roselda, I'm 58 years old and I was diagnosed 7 years ago. I really feel for you as I help my 85 year old dad out and also look after my grandchildren and it's not always easy. One of my GPs in the past told me what they knew about scleroderma they could fit on a postage stamp! I really think you should push for referral to the Royal Free or at least to a rheumy who is more sympathetic. Don't give up and remember there is always someone here for you to talk to. Sending (((hugs)))

[Roselda in reply to nanagill]

Thank you Nanagill for your reply. If I push to see a rheumy at Royal Free then I would no longer be in the current system. Going to London for every appointment would be too much for me. My rheumy seems to know what he is doing, my only concern is that I don't have a professional person to talk to and ask questions outside of my 4 monthly appointments. My doctor knows virtually nothing about scleroderma and I feel so isolated and alone. A & E sent me home and 111 told me to go to the doctors. I won't give up and getting angry makes me feel stronger. Take care and thank you for your advice.

[AnnieMc in reply to Roselda]

Sorry for late reply. I don't know where you live, but if you get a referral to Royal Free or other specialist centre, shouldn't automatically mean you are removed from your present rheumatologist care. I still see my rheumatologist at my local hospital, attend Royal Free, and Brompton. I agree traveling into London is daunting but would be worth it, if they can give you the support and advice you need.

[Roselda in reply to nanagill]

Thank you for your reply. It is so reassuring to have so much support from fellow sufferers of this awful condition. It appears the rarer the condition the less the nhs does about it - absolutely disgusting. Take care.

[gindy]

Hi there,

I'm Charlie, I'm 43 and have had SSc for getting on for the best part of the last decade. I was diagnosed pretty quickly as the Rheumy I first was assigned was luckily one of the top SSc specialists, who was doing several trials using lasers to see if they were a useful diagnosis tool (that trial wasn't very successful but it apparently opened up different ideas).

It's an awful disease that takes some serious lifestyle changes, so as to try to get the best life possible in your situation.

I know you're looking after elderly parents, and that is a demanding job with this illness. What's helped me is managing my life around my illness, and trying to remember to STOP before the pain is unbearable. Rest regularly and often. ALWAYS use disposable gloves when doing the washing up-to-date and I've gobs doublebase gel helps a lot with the pain from tight stretched swollen skin.

I've just started coming back to the forum after a really tough few months. I'd stopped doing what I'm telling you to do, and it's definitely translated to much more pain and the insomnia is raging too.

I've started taking a nytol tablet a couple of times a week just before bed. Then reading for an hour until my eyes start to droop. I'll then get a good 2 hours, which is better than usual. It's worth a shot maybe?

You're in our thoughts,

Charlie x

[Roselda in reply to gindy]

Thank you for your reply. As I'm taking methotrexate, sulfasalazine, folic acid plus ramipril, bisoprolol and bumetanide for my heart I can't take anything else not even pain killers as they would not mix. I have more flares and bad days but I am not as unfortunate as some as I do not have reynauds so in that respect I consider myself lucky. It's really good to be able to get in touch and with people like yourself who can understand how I'm feeling. Take care.

[MilkMaid]

Hi Roselda,

You didn't say what dose rate of Methotrexate you are on but even low doses take a while before having any effect. I was on 15mg a week and it was at least 12 weeks before things started to improve. Moisturise as often as you can and if you are able, do some simple stretch exercises to try and improve your flexability. If your lower legs are really tight and swollen using standard off the shelf compression hoisery might help, I get mine on prescription and they make a big difference - but we are all different. It might be worth giving them a go. All the best.

[Roselda in reply to MilkMaid]

Hi MilkMaid, thank you for your reply. I am on 25mg of methotrexate which I take on a Saturday, 5mg of folic acid on a Sunday and 2000mg of sulfasalazine every day. I have been on Mtx for 4 months. I moisturise every day and do stretching exercises daily. I can't wear support hose because my skin is too sensitive. I cant stand still because my legs feel as if they are going to explode. I have only been taking the sulfasalazine for 4 weeks so maybe they will alleviate the sentations when they get into my system after 3 months. Take care. Roselda

[redtree]

I also have a ganglion on the wrist of my hand most affected by raynauds. It does not hurt most of the time. I never thought it might be related to scleroderma and have not mentioned it to my doctor