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stace38

Scleroderma - looking for support.

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Hi, this is my first post.

 

Just wanted to introduce myself. My name is Stacy, I am 38 years old, married with 5 children living in the UK. Before I had my youngest child I kept myself fit, gym and running 5 days a wk and was self employed as a mobile hairdresser. Life was good and I was happy.

 

About four months after having my youngest child who is now 2yrs and 3 months I became ill. I wanted to get back into my fitness as soon as possible but found that I was struggling, just put it down to having a baby and I was getting older so my body was taking longer to recover from pregnancy and the birth. I had began running again but really found it hard and my body was taking longer to recover. It didn't stop me though, I kept pushing myself, I'm not a quitter and have always pushed myself in everything I do. I started to get bad pains in my lower back and hips which soon travelled down to my legs.

 

Eventually I went to the doctors, he referred me to a neurologist who referred me to a Rheumatologist. Lots of tests and seeing different specialists. Apparently my bloods were showing positive for scleroderma. Many many more symptoms came soon after, skin changes, hair loss, Raynauds etc. It's the pain I can't bear. I have now been referred to Professor Denton in London, hoping he can help me.

 

I feel no one understands what I am going through, that I have accepted it, and they never will, will they? I get so frustrated and angry at times that I can't do what I used to do, I can hardly walk, what I would do to be able to run again. I try to take each day as it comes but as you know it's more like taking each minute with this awful disease, we never know what may happen. I have accepted that I am never going to be who I once was, but I am learning to deal with and make the most of the new person I have become.

 

I am hoping that 2017 is going to be the year that I can be positive in everything I do, I want, or should I say  everything that I put my mind to I will be doing.

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Hi Stacey,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing such unpleasant symptoms due to scleroderma. The only good thing is that you have been referred to Professor Denton, at The Royal Free Hospital, where they are top level scleroderma experts; if anyone can help you, they should!!

 

I can sympathise with your feelings; I too was very fit and active when I was diagnosed and in fact that's what actually saved me, as I realised that the lung symptoms I was experiencing should not be happening at my level of fitness and this prompted me to go to my doctor and have my symptoms investigated and the rest, as they say, is history!

 

It's possible that your symptoms may stablise and you will be able to be somewhat active again; perhaps not to your former level, but enough to make you feel happier and more positive. Scleroderma is a difficult disease for other people to understand, particularly as it is comparatively rare and very often has few outer signs to which people can relate. I'm fortunate in that I've never really had a lot of pain from scleroderma per se; my worst pain has been from my hips which were affected by the steroids I had to take, necessitating my having them both replaced. However, I was soon back at the gym, although I shall never run again (that certainly didn't help my hip problems in the least!)

 

I've included a link to our medical pages, in which you will find a wealth of up to date information and advice and I hope that it will help you. Now that you've joined our community, I hope you'll continue posting with any queries you may have and let us know how you're faring.

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

Thank you so much for replying. It is nice to hear from someone that understands, you don't feel so alone.

 

My Rheumatologist told me Professor Denton was the best in Europe so I feel positive about that.

 

Thank you so much for the link to the medical pages, I will take a look and thank you for giving me some hope that maybe one day I will too be able to get back to the gym.

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Hi Stacy
It's really difficult for anyone unless they've got scleroderma to understand how difficult and life changing it is. I got ill in April, spent 12 weeks in hospital before being diagnosed with scleroderma. I lost 4 stone, couldn't eat, couldn't walk far, got out of breath easily, was in pain constantly, couldn't get up of a chair. My fingers curled over and I got digital ulcers on my fingers. I had to give up work as a self employed builder.

 

Sorry this isn't me feeling sorry for myself! Things can get better and will improve with treatment I'm sure. I have improved a lot with medication and am currently near the end of a six month treatment with cyclophosphamide which should stop things getting any worse.

 

I just wanted to say things can improve over time. I've put some weight back on, can walk a lot further, I'm in a lot less pain and my muscle strength has improved. Even though I'm not back to my old self or at work that's my aim one day. We all try and stay positive, but it's hard with the uncertainty of how we will be affected over time and when simple everyday tasks become impossible.

 

I'm sure you will receive the best treatment available being referred to a specialist in scleroderma.

 

Good luck and best wishes

Simon.

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Hello Stace38

 

Welcome to the forums. I was 39 when I was diagnosed after rapidly progressing symptoms. Within 6 months I went from working to sitting on my couch, just about able to wipe my own butt and I am not saying that as an expression but as a literal statement of fact. You'll be pleased to know that I now have no problem attending to my own derriere but I can no longer work or walk. Swings and roundabouts, as they say.

 

Anyways, Prof Denton is an immensely likable chap, very patient centered which is so important.

 

Scleroderma is an odd disease because it affects everyone so differently even people with the same diagnosis.

 

Keeping a positive outlook is vital as is being realistic, otherwise we inadvertently pile more frustration and disappointment onto ourselves. Once you've seen Denton you'll have a good idea where you stand.

 

I hear ya about the pain. I really do.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Simon

 

I hope that you continue to improve and you certainly seem to have a good attitude to your situation.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Stacey,

 

I'm a bit late getting to this thread, but I was diagnosed around September 2015 after being ill for 9 months and being told all my symptoms were in my imagination and being put on sleeping pills, anti depressants and even anti psychotics, all of which made the problems even worse.

 

Once I found out I had Scleroderma, I told the doctors what they could do with their pills and had a terrible time coming off them. I managed to persuade a psych to give me pregabalin, knowing that it has helped others with peripheral pain and he agreed. Things almost immediately improved and I am now able to do a lot of the things I couldn't do at all in 2015, albeit with some difficulty.

 

From my own experiences and those of others on this forum, I know the symptoms can wax and wane and that some treatments help some, but not others, but I do as much as I can and try to push myself as hard as I can whilst continuing to research this disease and the different treatment options available.

 

I think that is all you can really do, trying out what works for you and what doesn't work so well.

 

Good luck and keep posting with your experiences which we can all share.

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Hello all,

This is my first post, just joined today after feeling pretty sorry for myself; a common feature of this disease I experience!

I actually have Mixed Connective Tissue Disease (MCTD) with Scleroderma prominent. I was pretty quickly diagnosed in 2015 after ignoring breathlessness, swollen fingers and Raynaud's for a few months then the inability to walk up stairs, lift myself from a toilet seat and other horrendous experiences led me to the general practitioner's. Initially RA was suspected as my twin sister has this but my consultant confirmed MCTD.

I was prescribed 60mg of Prednisone and 6 treatments of cyclophosphamide as my myositis was really debilitating. The steroids left me stronger, but did come with side affects! However, I was now able to function, get dressed without wincing and play with my young twins, something that I had greatly missed; anything sitting down indoors was fine but I didn't have the strength to carry them, get on and off the floor etc. Sometimes the looks that would come my way as I was the only mum standing up watching jigsaws being done on the floor or not lifting up my toddler if he was crying.

Anyway, I was started on Methotrexate but not only did it wipe me out for days after my dose, but it didn't seem to work on my condition. The steroids have eventually reduced to 5mg, with a top up injection but I am now starting Myfenax (mycophenolate) and desperately hope it has a good affect as I am going backwards. The breathlessness, general shivering aches and tight swollen hands are evident but also the Scleroderma is now on my lower arms and face around my mouth.

This seems like a pretty cruel disease, I know many others are worse, but it's so hard for those without it to understand. Some days I am really wiped out, painfully cold and so worried about the future that it's depressing. But, I try and remember that my treatment so far has been first class and if I could just get the medication right then I will go back to how great I felt after the injections, preferably without the bloated face!

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Hi Ally,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with MCTD and Scleroderma and are feeling so poorly. I can understand how you're feeling, as autoimmune conditions can be very debilitating. 

 

I've included a link to our medical page on Genetics, which I hope you'll find helpful and interesting.

 

I've never taken mycophenolate, so can't advise you from my own experience, although I was treated very successfully with cyclophosphamide in the beginning and now take prednisolone and another immune suppressant, azathioprine. I can certainly agree with you as to the side effects of prednisolone; when I first started taking it I was swinging off the chandeliers! :wink: I do hope that when you get your medication sorted out correctly you will feel a lot better.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise in order to deal with all it's little idiosyncrasies.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you Joelf for the message. It is really reasurring to know that others understand this condition. I am under great care of specialists but while the mediation is not working I am feeling lousy and sorry for myself!

I had to get my beautiful engagement and eternity rings cut off today. I had managed to remove my wedding band some time ago when I could feel it getting tight. It sounds a bit pathetic but I burst into tears looking at the clear difference in my fingers as the unbearable tightness of the rings had left a clear mark on my finger. The now swollen, puffy digits that I have get me down and I wonder if I will ever have my old fingers back? I know it could be worse and need to focus on this. Anyone else had this experience?

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Hi Ally,

 

I do know exactly how you're feeling with regard to your rings, as my fingers swelled and I had to have all my rings re-sized. At the time I didn't realise that this was due to scleroderma, but at one point my fingers were very large and puffy.

 

However, as soon as I started taking prednisolone, my fingers resumed their normal proportions and it cost me an absolute fortune to have all my rings (I have seven including a thumb ring that I wear regularly) resized again. :sad:

 

Thankfully, because I still have to take prednisolone, my fingers have remained the same size; just as well, because at that rate I can't afford to keep chopping and changing them. :wink:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

Sorry to hear your news but thankful you have found us, if you stick around you will find endless help and support here.

 

Rings, fingers :wink:  I don't remember how many times I have had to have my rings resized.   Not cheap either but I felt that I wanted to keep wearing them.   One time I nearly lost them though - just a wee warning - I had got very cold out on the water in our little boat (my husband loved his boat) and when I came in to a camping ground I just scooted into the hot showers.   Lovely hot water!! but what I didn't notice was that my fingers had shrivelled in the extreme cold and my rings flew off and landed in the drain, so close to going down into the never never.   I still get the shivers when I think of it.   Thousands of dollars literally down the drain it could have been.

 

Stick around we will be your friends and do our best to give you sensible advice and comfort.

 

Best wishes

Judyt

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Hi guys,

 

My name's Lee, I'm 38 and I have been suffering from Raynauds and Scleroderma since I was 5 years old. I also have type 1 Diabetes..

 

Just this week I have really started suffering with my swallowing; it feels like I have something constantly stuck in my throat which is making me panic a bit.

 

I'm not due to see my consultant at the Nuffield Orthopaedic Centre until the end of September. I'm just after some advice really as to what might be happening & how it might be treated because it's becoming really uncomfortable.. 

 

Thanks Lee

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Needs to be checked out because swallowing difficulties could have a number of causes including oesophagal dismotility or narrowing of the oesophagus (which can be stretched under anesthetic to improve matters.)

 

The more sinister problems are much less common but need to be excluded.  Do you have reflux problems or blood coming from either end?

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Hello Lee,

 

I also have Scleroderma but wasn't diagnosed, and probably had symptoms, until I was in my 40's so I imagine you are pretty much an expert in the condition.

 

Obviously sorry to hear you have been suffering with it so long and now have issues swallowing. I have had problems with this for some time and actually avoid certain foods; apples, crusty bread etc., as the feeling of food being stuck also greatly panicked me. I always have to ensure that a large glass of water is available with my meals, the severness of difficulty swallowing depends for me on whether I am responding well to medication. 

 

I have recently had two courses of Rituximab are hoping to feel the benefit very shortly. Anyone else had this treatment? 

 

Ally 

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