Living with Scleroderma and it's "friends"!

I have had scleroderma over 20 years, Raynaud's even longer, and since 2010 my health has declined with lots of other conditions diagnosed resulting in an emergency ileostomy procedure. Life can be up and down and it would sometimes be helpful to chat to like minded people! Prior to 2010 I had a fulfilling career but now it takes effort to get up out of bed. I get fed up of explaining to people what my conditions are, whilst at the same time get sick of hearing my own voice repeating the same words!

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  • Hi kimmo you're not alone, in fact I only discovered this place about a week ago but already fit right in.

    I hear you when I say it takes huge efforts to just get it of bed some days. It's an awful feeling and to others not in the know we can look like lazy gits. Truth is far from it though, and to just do what others take for granted takes a massive amount of energy both physically and mentally.

    How are your pain levels I wonder? I ask as I've got Raynauds and Scleroderma (SSc) and I'm wrestling with my pain levels and the meds needed to combat them. I'm slowly becoming of the mind though that more opiates are the lesser of two evils as without them/reduced amounts my little bit of tolerable life is diminishing.

    Anyway, welcome to the forums!

    Charlie.

  • Hi Charlie, nice to hear from you especially as you are empathic! Without writing too much, regarding the pain side of things it has been difficult over the years. I must have tried everything the consultant suggested in the early days but nothing worked, bearing in mind they knew very little about the condition back then. I stayed off meds for years putting up with my condition until 2010. Whilst in hospital I was given a complete MOT and new medication prescribed by the rheumatology consultant. To suppress my immune system I take 1440mg daily of mycophenolate sodium together with 50mg of losartan potassium to protect my kidneys. I take meds for sjogrens also plus lots of other things. My pain meds are prescribed by my GP who happens to be a palliative care doctor. I take 1 OxyContin 10mg prolonged release tablet every 12 hours and if I have further discomfort I have OxyNorm liquid which acts quite quickly. I feel extremely lucky to have my GP as he has experience of scleroderma and I can order more liquid, over and above my four 250ml monthly bottles should I require it. I am now on 3 monthly blood tests also. I am unable to manage without my pain meds although I do try to withstand some level of discomfort as opposed to being comatose! The only downside is I can no longer tolerate alcohol and have had to forego certain foods due to my ileostomy. Not sure if any of this helps but let me know how things progress.

    Regards,

    Kim.

  • Sorry for the awful time lapse before replying! Long story but health issues, needless to say, have played a significant part. I feel much better now and am in agreement with you, the less opiates the better! My mind is in enough turmoil without adding more to it. I have recently found out I have to have to go into hospital for the removal of two impacted, abscesses teeth so have to admit I have reached for them more than I have wanted to. I am classed as an 'emergency' 10 weeks and not even seen consultant! Anyway, enough of the rant. Hope you are well. Take care. Kim

  • Hello Kimmo and welcome. I was diagnosed with scleroderma and pulmonary hypertension just before Christmas and my life has been completely turned upside down. I know what you mean about trying to explain to people about my conditions as no one has ever heard of them before let alone what they mean to me and my daily life. I pretty much stopped working and went from being a professional working mum to a disabled stay home mum who is different to all the others overnight. It would be really great to chat with someone else who understands. I am fighting back against these illnesses as best I can and certainly have a lot of living to do despite my physical limitations. X

  • Thank you for the warm welcome! I have had to think long and hard to remember my diagnosis as my memory is awful now. I had three small children then, one a new baby, and just didn't have time to allow this condition to interfere with my life. I was a single parent and wanted to know why at that stage in my life it had happened. I was told it was most likely due to the shock of getting divorced and should be grateful it wasn't cancer or a heart attack! I understand you when you say your life changed overnight as mine did too in 2010. I had an emergency MRI scan but the scleroderma was masking my internal organs and when they operated my colon and large intestine were necrotised, hence the ileostomy. I recovered over a period of time but have not been the same person. I look in the mirror some days and wonder who is staring back at me. I have never had PH but I can't look at them as 'illnesses', I prefer to say conditions and in that way I seem to be able to cope better! Keep up the fight but don't ever make yourself feel bad if you have to let down family and friends. I felt guilty initially as I didn't look that unwell but eventually people came to understand. Good luck for your future endeavours and it's been nice to chat. Keep in touch.

    Regards,

    Kim x

  • You've certainly had a lot to cope with and good on you for getting on with your life. My family certainly give me a very good reason to carry on and fight each day. All the best to you to and will keep in touch. x

  • I'm also in the same boat it does get you down but I'm trying to find other people in the westmidlands area to meat and have coffee with but not to mention the illnesses but no one wants to chin up

  • Thanks for your reply! Like you it would be nice to find someone local so hope your search brings you some luck. Failing that, there are always the people on this forum who are willing to chat and you could always have your coffee to hand! Let me know how things go for you.

    Regards,

    Kim

  • Repeat, repeat, repeat. The more people know about our condition the better for everyone. The more research goes on the better.

  • Succinct and to the point! As far as I was aware in about 2008 there was a big study being undertaken at Leeds with students taking their PhD to include scleroderma. I haven't heard anything recently though but you are correct about the research. Sometimes it is interesting to research the american sites but a lot of them mention stem cell transplants. I know this will not take place in my lifetime but in years to come who knows what will happen!

    Regards,

    Kim

  • Just to say that good research is going on along with treatment at the Steffens Scleroderma Center in Albany, NY. I don't have scleroderma but I do have Degos disease, an extremely rare disease which has some overlap with scleroderma. I also used to have Raynaud's, but not since I've been taking Trental (pentoxifylline). And being tired is one of my bugbears - trying not to feel guilty is hard!

  • Hi. I have to admit I have never heard of your condition. The overlap, however, I do understand as lots of my other conditions do the same thing and it can be frustrating. Raynaud's I have had since I was a teenager and have been told it can be a precursor to scleroderma. How true that is I'm not sure! I will mention pentoxifylline when I next see my consultant so thanks for that! Tiredness and fatigue, I agree, are awful and people just can't seem to comprehend why you cancel things at the last minute. I used to feel terribly guilty but not anymore. I think with age comes a different set of rules! Just be like me, pace yourself and know there will be some days worse than others. Take care. Kim

  • I too have deteriorated recently after 15 years coping quite well with systemic scleroderma, lung fibrosis and reynaulds. I know how you feel. Trying to explain how this condition affects my everyday life when no one around me has experienced it. When you haven't got the energy to get out of bed and taking a shower is like running a marathon, is hard to explain to the fit and healthy. I have lots of support from family and friends and they try to understand but it's so hard. I would just love to have my normal life back. I'm trying so hard to do all the things they want me to but I can't. Just have to keep going. X Keep smiling!

  • Like you I have those and a few little extra ailments but because you look normal on the outside(except deformed hands failing eye sight) people can't understand why you don't do more as my father said to me you don't look ill what can you say to that so smile and have what you want when you want it life is to short.

  • I can empathise with you too, especially the shower part! I never use the word 'normal' anymore as I have forgotten what it is. You talk about your condition as do I. The word illness depresses me even more. At least this way I can convince myself that there will be good and bad days and I just have to cope day by day. Planning has gone completely and i'm more a spur of the moment person now. You are correct to say we just have to keep going as regardless of any help we experience, this really is a condition that makes for a lonely place if we allow it. Keep smiling yourself. Regards, Kim.

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  • Hi Kimmo, you have come up as living very near to me and would be great to chat. I am new to all this and only been diagnosed a few month ago. I have diffuse scleroderma.

  • Hello Maryjcl. Thank you for contacting me. I have viewed your profile but it doesn't give much away as to where you reside! I am more than willing to chat and help in any way that I can regarding this condition, so please feel free to contact me at any time! Regards, Kim.

  • Hi Kim, thanks for getting back to me really appreciate it. Kim I haven't put anything on my profile as yet but have diffuse scleroderma and only been diagnosed at beginning of this year although I suspect I have been living with it for a few years!! I live in Keighley Kim, are you near?

  • About 15 mins from you. I've had scleroderma over 20 years but mine only became diffused in 2008 and then my problems began. I just take each day as it comes now but have found this condition to be extremely debilitating since 2010!

  • I know exactly what you mean Kim I was used to running around at 100 mile an hour and now lucky if I can survive a walk ha, I thank god for a good sense of humour!! Kim don't want to put any pressure on you but would love to meet for a coffee and a chat but absolutely no problem if you are not up for that, talking to family and friends is difficult when they really don't understand, ha don't really understand it fully myself.

  • It's taken a long time for my family and friends to come to terms with my condition, especially my children. Now they appear to be coping. My partner has been my rock throughout but we have had our tough times. At the moment my parents are on a six week visit from abroad. Also, as I'm sure you can appreciate we can make arrangements then not always be able to keep them! I'm not ruling out meeting up though, please don't get me wrong!

  • Kim don't worry I know exactly what you mean, if any time in the future you think we could meet then just let me know. How exciting for your parents to be here, enjoy every minute with them and hope to chat some more on here.

  • Hello again. Bad night and not long awake! As you have only recently received your diagnosis, who is your consultant and what meds have you been prescribed? Are you still able to work? I no longer can and miss the independence as I was self employed. Off to Drs now. Take care. Kim.

  • Hi Kim, will I'm not working either, don't think I could manage a job at the moment.I am seeing dr. Del galdo at chapel Allerton hospital and am on omeprazole and mycophenolate at moment,I have agreed to do the clinical trials so will be going on them soon. Speak soon Mary

  • I was initially under Leeds but after my emergency op at BRI, and my subsequent recovery at St. Lukes, I opted to remain with the latter. I am on all sorts of meds includingmycophenolate which has been responsible for raising my cholesterol so now I have to take statins! Some days I feel rebellious and if I wake up late don't take my morning meds! I have just posted something back to Leeds regarding some clinical trial they are conducting re connective tissue disease so that's coincidental we both involved in something similar. Bye for now, Kim.

  • Kim if you don't mind me asking what was your emergency op for.

  • I had no warning but collapsed at home and was rushed to BRI. My partner recognised septicaemia and 9 hrs after admission I was taken into theatre. Scleroderma had masked all the scans but my bowel had necrotised and I lost my colon and large intestine.Hence the ileostomy! My partner was told 3 times I wouldn't make it but i was blessed. This is when all my problems began! Don't want you to panic though. I've not heard of anyone else this has happened to!

  • Aw Kim that must have been an absolute nightmare for you and your family and thank god it ended well. Kim I'm not panicke but need to ask if this was linked to the scleroderma. I too have been blessed health wise as this is the first thing I have suffered.If I don't hear from you again tonight then I hope you have a better night, so far I'm sleeping ok. Mary

  • Unfortunately yes. Once diffused it can attack internal organs. I've had my annual heart, lung and kidney checks this year and they are satisfactory. My teeth affected by Sjogrens so losing some, yuk as always had good teeth! Waiting to go into Airedale to have two impacted, not even loose, teeth removed. Dentist found osteoporosis so vitD for six weeks then bloods. If ok then bone density scan to confirm. Statins first time tonight, fingers crossed no side effects! Never have a full night sleep because of the ileostomy bag/insomnia. The irony is in my head, apart from the fatigue, I don't feel that unhealthy!! Over the years I think I have developed a certain mindset where I have convinced myself that this condition won't beat me. Since 2010 this has become a little harder. I have a feeling this may be a long night. Hope yours is better!

  • Good morning Kim, I hope you had a decent night. Aw Kim this will not not beat you, you have come through so much and I think are really strong minded as am I and my god we are going to have to be. Kim I also feel well in my head and to be honest if the skin tightening eased off and the swelling went down I would be fine. My stomach is so swollen and tight that I look pregnan.Kim my gums receded a few years back and I have denturesI also have the puckering round my mouth and my top lip has all but disappeared but like everything else you learn to live with it. Kim if you don't mind me asking how old you are, I will be 60 in November. Off to docs now Kim so speak soon, Mary

  • Hi Mary. Hope your visit to dr went ok. I will be 59 in July but not in my head! I no longer have the problem of bloatedness since my op but my bag, who I call Elvis, tends to blow up like a child's lifebelt. This can be a little embarrassing if we dine out! My mouth is becoming smaller and it's difficult at the dentist now. I know what you mean re top lip too. I use Clarins serum in an effort to halt the lines around my mouth but not sure it's working! I can't remember my last skin score but I find it affects my fingers mostly and the constrictures are turning my joints and making it very awkward to grip now. It's a lovely day and what I wouldn't give to go on a nice long walk. My partner had injections in her back on Friday so even a short stroll is out of the question. Time to immerse myself in yet another book. Hope your day is more productive! Kim.

  • Hi Kim, I had to have bloods done, surprise eh, and she explained one of the things that showed up in my ct scan, the muscle from my throat to my stomach isn't closing, can't remember what it's called, so don't know what that means. Aw that's a shame about your partner I hope she is ok. Kim how mobile are you, I would struggle to walk far now so thank god for my car. Haha elvis, that made me chuckle

  • Do you mean your oesophagus? Are you having problems with reflux? I've had a barium meal ages ago but struggle swallowing at times. I started out on weekly bloods after my chemo, then monthly and now three monthly or whenever needed. Can't do it at surgery so have to go to hospital which is a bind. Re walking, not far and slowly! I get out of breath easily even though lung function tests were satisfactory. I use a stick too as problems with my knees. Have physio every two weeks at St. Lukes. I would be housebound without my car but must admit my confidence has gone since my op and I won't attempt long journeys anymore because of the condition. I have an eclectic taste in music but Elvis is a favourite!

  • No it's my oesophagi I do have problems with that and am on omeprazole. This is the pipe that food and drink reach the stomach.Kim how weird I'm the same with the breathing and my lung test was ok but I have a couple of leaking heart valves and due to see the cardiologist beg May. Aw I'm same with elvis, I had a bedroo covered in his pics.

  • I wouldn't admit to that! I was more of a Wigan casino girl and soul music with Elvis in the closet! Have loads of his stuff now though and still think he is the most handsome guy I have ever seen! Not at the end though. I seem to be on much more medication than you but you seem to have other things I don't. I have learnt to just take each day as it comes now. If I need to stay in bed I do and sleep. Don't feel guilty anymore. I did for a long time as if you look ok people think you are and then come the questions. We have a neighbour who constantly asks what is wrong with me. I retired early with ill health. Still the questions come. Have you ever had that?

  • Hahahaha I will defend elvis to the death. Yeah I get asked if I have retired, like I look old enough haha. Kim I decided a long time ago not to worry about what people say or think and I'm so glad I did. Yeah we seem to have a few things same but then other stuff so different,I was told there could be 10 of us with the same condition but all have different symptoms, it really is a bizarre and complex disease!!

  • My partner been to Graceland and we always planned to return next year when I'm 60 and she's 50. Can't do the flight though, let alone the tour, but I wouldn't dream of stopping her if that's what she wants. No idea how many people at St Lukes but none at my surgery. I was told when diagnosed that there may be a link to trauma and chlorine with scleroderma. I was pregnant with my 3rd child and split from my husband. Went to Harley St and bingo, scleroderma. My son was born prem but was ok, had multiple childhood allergies and developed diabetes type 1 at 7. I also did an awful lot of competitive swimming when I was a teenager. Makes you wonder if there is a connection. I was in hospital with a dr who had scleroderma and she was convinced it was trauma for her. Have you ever heard of any theories?

  • No kim I haven't but funny you should say that cause I had a really bad fall about 16 years ago and seriouslyhurt my back and chipped my coccyx and now have arthritis of the spine and the start of osteoporosis at bottom of back, haha I'm such a catch these days.

  • A friend of mine fell outside Asda, fault was theirs, and eventually was in so much pain that she was advised only option was to have her coccyx removed. More pain than ever since op so you have my empathy. Hope you don't mind me asking but I thought when you mentioned family that you were married. Are you on your own dealing with this condition?

  • No im not on my own, I have a fantastic family, one husban one daughte and two sons, one very lucky lady.

  • It was when you said 'lucky catch'. Sorry! I have two daughters and one son. Two beautiful grandchildren, boy and girl. They all live in Lancashire though. My parents are over there at the moment so will see them all on Sunday. Can't wait. Enjoy your evening. My turn to care for my partner who is in bed with her back. Makes a nice change.

  • Aw what's she done to her back, hope it's not too serious. Kim how old are your kids?

  • My eldest is 35, then 33 in July and 27 in August. My son is the baby! He is in Italy with his fiancé searching wedding venues for next May. My partner has been diagnosed for few years with degeneration in her spine causing neurolo pain in her chest. New consultant at Yorkshire Clinic now searching for an alternative diagnosis. I don't think they know what she's got to be honest.

  • Morning Kim, aw that's a shame hope she gets sorted soon. My daughte is 35 also, my son 25 and my baby who I adopted 5 years ago will be 6 in July and he lights up my life. Hope you had a decent night, Mary

  • Hi Mary. That's wonderful to still have someone so special still at home to love and be there for you. No doubt it keeps you going. I have had to go to our local co-op today to shop for bits and am shattered now. Everyone walking around in summer clothes and me in a jumper and jacket! Don't think you suffer from raynauds? Are you on max dose mycophenolate?

  • No not got raynaudsyet but think it's on its way but I do get really cold. Kim you said you were once bloated did they say what the cause was, its driving me crazy, walking round looking 9 month pregnan!! Never had a completely flat stomach but this is taking the biscuit haha. Did you have a decent night last night and how is your partner today?

  • After I had my op they told me that if I had food intolerances before I would still have them. Hence the blown up bag. I paid for tests and biggest was wheat and dairy. I used to bloat and have size 10/12s to cope! Was never better than when I cut out these two things. Gluten too was another one. Just a thought but you may have already considered it. I had a flat stomach when not bloated. I've got one now but a nice hanging bit below where they cut through all my muscles during my op. Told me no amount of exercise will cure it. Great. Had breakfast but fell back asleep and woke at 3! My partner been in pain and asleep since 5pm so just me, tv and the cat!

  • Yeah I cut out bread, rice and potatoe a few week back but hasn't made any difference, it's just so uncomfortable.

  • Does the bloating ever cause pain/gas? Worse after eating certain foods? Only asking as when I think back I used to get bloated like I said but there were times when it happened and I hadn't eaten wrong things. Drs asked had I had any warnings re my op and I said no. They said bloating was one. Next time you see consultant just might be worth mentioning could the bloating be linked to your small bowel. Sorry for rambling if they already explored this but wish I'd known. If we meet for a coffee I will tell you the rest of the story.

  • Kim I get lots of pain and gas. Have mentioned the swelling but they didn't seem that interested so that makes you think there is nothing to worry about. Just going to bed now, hope you have a good night, Mary

  • Hi Mary. That fills you with lots of confidence, not. I found this bit of info and as the stomach is part of the GI tract and they are already investigating that area for you, wondered if it might be worth mentioning. 'Stomach symptoms in scleroderma are due to slow emptying of food into small intestine. The retention can lead to ... bloating sensation and distention'. I am aching all over today so think rain must be on the way! Had to put the heating on as cant feel my fingers!

  • Aw Kim thanks for that, I just realised I have an app on Thursday at Leeds, completely forgot about this app lol so I will speak to them about stomach.I think it's been cold today, you keep warm.

  • Hi Kim, how are you, hope you had a good weeken. Mary

  • Hello Mary. Not brilliant as I started on the statins and thought I had a reaction to them. Missed the party with my family and parents too. Spoke to dr on Monday and he thinks they reacted with a particular tablet I take at bedtime so advised to take with evening meal. Seems to be working so far! Was going to contact you to say will be thinking of you on your visit to the hospital and to let me know how things go. Kim

  • Morning Kim, aw that's a shame but good that it's settling now but pity you missed the party. I am making a list of questions for Thursday haha he is in for a long visit, will messageyou Thursday night. Have a good day, Mary

  • Hi Kim, went well for me today as they are really pleased with the change in my skin so looks like the meds are working althoug I have to go for an endoscopy to see what is going on with my stomach.I feel much better now as seem to be going in the right direction. How are you feeling today? Regards Mary

  • Hi Mary. Sorry not been in touch for a while. We have changed service providers and they cannot connect our broadband and internet services until 6 June! There was a fault on the line apparently when they tried initially. I'm at my daughter's for the weekend so am online. Hope you ok and all going well re your endoscopy dates. Free w/c 9 June if you want to meet for coffee. Kim

  • Aw what a nightmare for you. Got date for endoscopy it's 22nd June so not too long to wait. Been poorly again this week with that sickness but feel a lot better today. Kim that would be lovely to meet for coffee, any day apart from the Friday is good for me so let me know when and where. Enjoy your time with your daughte.Mary

  • Sorry you been unwell. I've had quite a good few days which I've marked on my calendar! Needless to say I'll pay the price when I get home on Monday. Amanda is going away with her daughter for a week on the 9th but the flight is too long for me so I decided against it. I hope I'll be able to get back online before we are connected to confirm! You any preferences/suggestions? I'm off to bed now so let me know.

  • Just remembered I think I have a physio appt on the 14th! Realised the 9th is a Friday too! So it's w/c 12th. It's late!

  • Haha or your age, only kidding!! Still any day for but can't do the 13th. I don't know where you live so can't really recommend anywhere but I'm not fussy. Mary

  • Hi I live in Bingley. There is Dick Hudsons over the tops. If Amanda and I ever come into Keighley we go to The Cake'Ole which is in a little arcade. I have had a bad night, too old now to do bed swooping! It's no joke re the age thing either! My memory is awful. I put it down to medication and side effects. If 13/14th are out for us and you said you can't do the Friday either, how about Thursday 15th?

  • Meant bed bed swooping. That's what swollen fingers do for you!

  • Damn. Bed swopping!!!

  • That's perfect for me. Cake ole sounds good if you don't mind coming to Keighley.I had a restless night too, don't think the heat helped. Out in Bradfordshopping at mo with the handsome boy and my daughterand just got caught in a downpour, no coat obviously. Yeah my memory is shockingalso, think it's the condition!! Enjoy rest of your weeken. Mary

  • Ok. Thursday 15th at cake ole then. What time best for you Mary as you have commitments. Confirm after the weekend? Hope weather improves! Sunny here.

  • Sun back out here too. Morning is best for me Kim. I'll wear a red rose so you recognise me 😂😂

  • I'll carry the newspaper then! Around 11am ok for you? Thunder here and very large drops of rain. Glad I'm indoors. Looking forward to meeting up! Kim

  • Fab, looking forward to meeting too. Yep we have the storm, hope it goes soon.

  • Hi Kim, sorry not been in touch been a busy time, hope your doing well. Looking forward to meeting up next week if your still up for it, Mary

  • Hi Mary. We only got our broadband switched over yesterday so I couldn't receive messages even if you had sent them! Up to now I am ok for the 15th at 11am. Fingers crossed we both ok on the day! Kim

  • Nice one, fingers crossed, Mary

  • Hi Mary. You still ok for tomorrow? Kim

  • Hi Kim, yes looking forward to it, see u at 11. Mary

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