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Posts posted by dimarzio

  1. Thanks Jo, it's the inactivity that's driving me insane.  I've been out walking for 2 hours today, but it's been a nice day.  Problem is that when I get home I seem to stiffen up again very quickly.  Walking loosens everything up, but the stiffness then sets back in.  It's as if I need to keep on the move every hour of the day.


    If I sit and watch TV, I have to constantly keep changing posture and position otherwise my joints and ligaments seem to seize so quickly.


    I dare not chance swimming with my Raynaud's being so severe.

  2. Jo, I'm 57 and diagnosed at 57 too. Could you explain why you take steroids, how they help and the side effects. I know people with this disease take steroids but unsure of the pros and cons or at what point they are prescribed.


    I've been getting a twang in my right wrist and keep needing to stretch it. If I don't, it tightens up and I get an effect like an electric shock through my hand. I immediately thought it was the onset of Carpel Tunnel, but the Rheumatologist said it wasn't (not sure how he could be so sure though).


    Other than walking the dogs' how much and what kind of exercise do you get - Any tips? All I'm managing at the moment is a bit of walking, but the pain and the cold are taking any real enjoyment out of it. I'm finding it quite uncomfortable to sit and keep needing to move from seat to seat and keep changing positions so I don't get too stiff.


    I'm getting very bored due to my limited activity, but am trying to do as much as I can.


    I've had a quick look at the Patient and Caregiver Stories and will read a bit more later.


    I'm concerned that my hips might be necrosis too, but it could be ligaments/tendons or something else - they've really got quite bad in the last 3 months. Are you able to sleep on your side or is that to painful? Do you have any of the esopheagul and stomach symptoms?

  3. Isn't it hard when you have a disease that nobody understands. If you have cancer or heart trouble people know you are in distress and understand, but with limited scleroderma (LSSc) nobody has ever heard of it and you feel quite alone as nobody understands how or why you are suffering.


    When I visit my general practitioner or have had to go to an emergency department, it's quite clear that the doctors have no idea of what it is and just chastise me for reading sites like this one.  It's as if they are too embarrassed to admit that they have no idea of this disease at all.


    The only person who has any idea is the Rheumatologist and he's just made an appointment for me in 7 months time (a lot might happen in 7 months).  He has however ordered esophageal tests, lung function testing and a heart ultrasound (not sure what a heart ultrasound is likely to show).


    My friends and family switch off as soon as I try to explain it and the doctors simply want to ignore it and put it down to lack of exercise (as I've said before, I do a fair amount of walking, so long as the weather is fine - min 30 minutes but sometimes 60 or 90.  At 57 it's hard to do much more strenuous).

  4. Am I correct in understanding that Systemic Sclerosis affects 1 in 10,000 people and that 6 out of 7 sufferers are female?


    If that is the case, the chances of a male getting it are 70,000 to 1 - that's incredibly long odds isn't it?


    Does anyone know of any other statistics or probability info?


    Is there any data on the probability of the limited form becoming diffuse?


    I have esopheagul, stomach and bowel involvement as well as a lot of aches and pains plus some odd skin patches developing on my shoulders, though to be honest, apart from my skin feeling thick and odd, it's not causing any dis-comfort at the moment. - does all of this indicate limited or diffuse?


    I've read some stuff that says nobody knows what causes this disease (other than the immune system not turning off), some suggest an inherited pre-disposition (though I've never come across anyone with the disease until now), I've read some stuff suggesting links with vinyl chloride and heavy metals, and some suggesting lifestyle, though these seem fairly tenuous.  Are there any other studies suggesting possible causes?

  5. Interesting article Jo.  Of course none of us really know how long we've had this disease. I have had hip and back pain for many years and put it down to normal aging. I've had cold hands for 5 years but just put it down to getting older.  None of these had a huge effect on my life, but we don't really know until it gets bad and we have the appropriate tests and examinations.


    I really don't know whether I've had it mildly for 5 years or 18 months.  All I do know is that my life was normal until Jan 2015 when I was struck down with chronic insomnia and a constant feeling of faintness.  I was also getting cold feet but everyone put it down to anxiety (though I knew something worse was going on with my body).  The Raynauds and small patches of thick skin did not arrive until July/Aug 2015 when follow up blood tests for Raynauds identified Systemic Sclerosis as the cause.


    It would be interesting to hear other peoples views on how long they may have had the disease prior to diagnosis, though there don't seem to be many people commenting on this board - I wonder if I would get more comments posting on the main board.


    Jo, how old were you when you started getting symptoms?  How long was it before you were diagnosed and how long have you lived with it since diagnosis?  I would be interested in how it affects your life and how you overcome the many obstacles it presents - if you have the time to reply.

  6. The trouble is that I've had to quit alcohol and caffeine and I've also had to quit most of the foods I like due to chewing and digestive problems, so I don't have many pleasures left.


    Smoking is the only guilty pleasure I have.  I'm hoping that the more I cut down, the easier it will make it to finally quit - certainly easier in the warmer weather when I can keep more occupied.


    As I said earlier, I have failed before with nicotine patches but did succeed for 12 months with gum - I can't use gum now though because of esopheagul problems.


    I did quit cold turkey last May, but at that point the systemic sclerosis was fairly mild - since then it has really attacked with a vengeance.


    Since there is a 1 in 10,000 chance of getting this disease and 6 out of 7 are female, that means a man has a 1 in 70,000 chance if my maths is right. To me that's very high odds against contracting this naturally.

  7. Yesterday was a fine day and I could go outdoors. Managed to restrict to 4 yesterday, but today it's wet and windy and I'm stuck indoors getting bored so I'm struggling today. Worst still the next few days are forecast to be dire, so I'm stuck indoors again and will no doubt reach for the packet again.


    It's so much easier to cut down when the weather is fine and I can get out and do things. Miserable days and I can't do much - my eyes can only cope with a few minutes on the computer and I can't concentrate on the TV or radio.


    I have to see the endocrinologist next week because my pituitary hormones are too high, then have to have tubes stuck down my esopeagus at the end of the month.

  8. Thanks for the links Jo - you look too young to be thinking about pensions (unless you are using an old photo).


    Did you know that there are a few companies that will give you an enhanced pension if you have certain illnesses, so don't just take what your pension provider offers you.


    Nicotine is a terrible addiction to quit, especially for someone who has smoked for 35 years - I'm finding it hard because of the boredom - I'm just getting bored because the faintness and Raynaud's seem to be stopping me doing very much.  I've quit several times over the years - managed 12 months once, but it is so much easier when you have an active healthy life - keeping busy helps take your mind off of it.


    That said, I've only had 3 today, so hopefully I can taper it down - can't manage cold turkey at the moment.  Trouble is that it only takes a little bit of stress to make me reach for the packet - one of the most stressful things is that I keep lurching from being very hot to very cold and can't keep an even temperature - I think it may be my immune system causing the wild temperature swings.


    Been a mild sunny day today and even managed to wash the car for the first time in 5 months - hands got really cold though even with rubber gloves - it felt like a major success though.

  9. I think my rheumatologist said that nifedipine was OK for Raynauds's but I'm sure he said not for secondary Raynaud's., He gave me Losartan, but it made me vomit.


    I've now been on Ramipri for about a week and it seems to be helping a bit, but it's too early to be sure as the weather has been a bit milder and it might be the latter that is helping - we shall see when it gets colder again.


    Interestingly I asked my general practitioner about nifedipine and she described it as "a horrible drug" and said that she thought that it's side effects would be worse than it's benefits - but that was 2 weeks before they diagnosed lSSc.  I think when she said this, she thought that it was primary and it was not so bad as it is now.

  10. I have a question about tight hands and curling fingers - Is it always caused by tight skin or can it be caused by tightening/calcification of the ligaments or tendons?


    If the latter, I heard that there is an operation to help with this from somebody I was talking to, but no help if its due to skin tightening though.


    When my Raynaud's gets really bad, I find that my fingers and my toes curl, but this passes when the attack subsides (usually in bed at night - I wake up in the morning feeling a bit better, but then as soon as I get out of bed and stand up, I can immediately feel the sensation of blood running out of my feet and legs - hands OK though at this point).

  11. I need to give up because it's making the Raynaud's much worse and I think is also contributing to my feeling faint.  The problem is that systemic sclerosis is stressing me so much it's making giving up so hard.


    I've cut down from 20 per day to 15 per day to 10 per day and am now down to 7 or 8.  I gave up for 3 months in the summer (when I was less stressed) and my general practitioner and Psychiatrist both told me that stopping smoking was adding to my stress and the cause of my insomnia, so I started again.  That was a month or so before systemic sclerosis was diagnosed (what a load of bad advice from my general practitioner and Psychiatrist).  Of course they didn't say to start again but that's what they seemed to be inferring (my insomnia remained by the way - so they were wrong, though I'm sure their intent was good).


    I've given up several times over the years trying cold turkey and nicotine replacements.  Unfortunately the nicotine gum is no good now because of my esophagus problems, but I just can't seem to quit.  It was hard enough without the stress of this disease, but even harder with it.


    I also have the feeling that giving up might just be prolonging the agony - is 5 years of this horrible debilitating disease better than 2?


    Are there any other smokers with this disease or those who have managed to quit?


    Rheumatologist says I have "late-onset" systemic sclerosis - is the prognosis any different for that type?

  12. My rheumatologist has booked me an appointment for some weird test where I go to the hospital one day and they put a tube in my esophagus then I have to go back the next day for them to remove it.


    I gather that this is something to do with measuring reflux, but I've never come across this before.


    Does anyone know what this is about? Has anyone had a test like this? How am I going to feel spending 24 hours back home with this tube stuck inside me? I can't believe they are going to do something like this as an outpatient.

  13. Thanks for replying - I get the same from hand wipes as I do from water, so that isn't helping me I'm afraid.


    We are talking about the same wipes are we? Wet wipes or those things you use to wipe babies bottoms with.

  14. Two quick questions:


    1.  It doesn't matter whether I use cold, warm or hot water, any contact between my hands and water (even a couple of raindrops) sets off my Raynaud's.  Whilst I avoid water as much as possible, I know that every time I need the toilet it will be a difficult issues.  Does anyone else suffer Raynaud's this bad or have a coping strategy?


    2.  Just started taking Ramipril.  Has anyone else found it of help?  How long did it take to have any effect?



  15. Shelley - Yes, I do wonder whether something else, like fibromyalgia is at play.  I thought Systemic Sclerosis caused calcification of the connective tissues and the pain I have does have the feel of my ligaments and tendons hardening (joints, neck and lower back).  I've also lost so much weight that there is a significant amount of muscle loss as well.


    Jo- Thanks, I have read the pages you linked to before and I've tried just about everything I can to help sleep.  I've tried all the sleep hygiene techniques, over the counter stuff, herbal stuff and several anti-depressants and sleeping pills on prescription.  This whole episode actually began with two weeks insomnia in January 2014 due to the fact that I was worried that my arms and legs were so cold.  Whilst inactivity was not an issue then as I was a regular walker, it certainly is now due to the severe Raynauds, faintness and winter weather.


    I do not eat or drink within 2 hours of going to bed, but I do go to bed feeling that the tablets I take just before bed time are making me feel very bloated and have an unpleasant feeling in my stomach.


    I worry that this illness is developing much more rapidly than I would have expected.  The Rheumatologist did specify that I had late onset Systemic Sclerosis and I wonder whether this type is inclined to progress more rapidly than the early onset version.


    Whilst I may have misunderstood him, I got the impression that he was saying that Systemic Sclerosis, CREST and Scleroderma were all different things, whereas I got the impression that they were one and the same.

  16. Shelley's comment about several inlaws having Scleroderma is interesting. With a statistical chance of 1 in 10,000 that is even more puzzling.


    Since in laws are not blood related, it can't be a genetic issue, so I'm wondering whether there is an environmental issue here. Did these in laws live in the same area, work in the same industries, etc.?


    The other possible environmental issue could be air pollution - do they all live in an area where perhaps certain industries could be polluting the air, water sources, etc.?


    This is quite baffling.

  17. Yes - Hip pain.  I've had it on and off for about 20 years.  I gave up cycling in 2000 because of it, though I wish I had made more effort to keep it up.  As an alternative, I increased the amount of walking I did as I was told it was better for my hips.  However, they've got really bad in the last few months, particularly at night - the hip pain often wakes me up and is not helpful when I'm not getting enough sleep anyway.


    I used to be able to just turn over and the pain would go, but not any more.  I lay on my right hip and that aches, so I turn over and end up with both hips aching, but I can't seem to get comfortable at all laid on my back.


    I was wondering whether anyone on the forum might have been given drugs to help with their sleep which were effective and that they would like to share. 

  18. I do agree with you Jo, but they've tried umpteen different anti depressants and now have me on an anti psychotic.  I can't sleep even with that - the only thing that gets me to sleep is the Mogadon.  I can't take SSRI's because my sodium levels drop and most of the anti depressants also make me very dry and congested.


    Part of the problem is limited activity, I think - with all the symptoms I've mentioned, I'm no longer very active. Up until the Raynauds came, I used to walk for at least 1 hour per day and often much more, but the Raynaud's and faintness along with the bad weather have made that uncomfortable on the best of days and impossible on days like today.


    Like everyone else, I just have to try to make the best of it, I suppose.

  19. They gave me a low dose of Losartan for the Raynaud's but I vomited it up 20 or 30 minutes after taking it.  Rheumatologist says he will prescribe something else but did not say what - I'm still waiting for the prescription.


    Interestingly a friend of mine has recently suffered from kidney failure, which hospital put down to Losartan (which he was taking for high blood pressure). He stopped taking it and has been OK since.


    I am finding that simply standing from a sitting position, I get a feeling like the blood is running from my legs and my legs and feet go cold immediately (but this feeling only lasts a short while). Going from a warm room to a slightly cooler room even sets off the Raynaud's.


    The problem with the multitude of symptoms is that my general practitioner and A&E simply want to put it all down to anxiety or lack of sleep (I guess it's easier for them to do that than to actually help me - or maybe they truly believe that's what it is).


    Whilst the cold is almost unbearable (legs, hands and face freeze), it seems that the wind and rain seem to have just as bad an effect.


    I wish I too could lie down and have a nap but when I do, I just seem to get restless.


    Symptoms list (though some of these seem to come and go)


    Lost 3 stone in weight over 12 months


    Feeling faint

    Lots of headaches that over the counter drugs won't get rid of

    Discomfort swallowing and sometimes reflux

    Bloating after even small meals and drinks

    Need laxatives to make bowels work despite eating lots of fibre

    Keep feeling like I need to go to the toilet

    Very cold especially hands and legs

    Aching hips

    Aching shoulders

    Aching Neck

    Aching lower back

    Aching eyes - eyes feel tight

    Aching jaw

    Tight mouth and sensitive teeth

    Cramps in legs and generally aching legs and feet.

    Itchy sensitive skin (though nothing visible)

    Difficulty concentrating and following conversations

    Difficulty reading and watching TV as it seems like my mind is consuming words but not comprehending meaning


    Strangely, I don't have much thick skin, other than my left foot - but Rheumatologist says this is just hard skin and everyone gets it, but I've never had hard skin on my feet like this before and it feels to me thick rather than just hard.


    One big problem is that I look fine and people can't understand why I can't do things.  I can even hold short conversations, though after a while I seem to stop taking information in.


    The problem is knowing how much is due to the disease, how much due to insomnia and how much due to anxiety.  I've been taking Mogadon (nitrazepan) every night to sleep for about 4 months now - tried leaving it off and halving the dose and I end up with just an hour or two sleep and aching even more the next day.


    Have managed about 30 minutes of walking every day for the last week, but it's so uncomfortable - weather has now turned wet and windy, so I'm stuck indoors again for a few days.

  20. Hi, I'm new to this forum.  I first became ill in January 2015 with chronic insomnia and faintness. Doctors put this down to anxiety.  By August 2015  Raynauds got really bad (I had it earlier in the year but it worsened dramatically).


    At that point a blood ANA test confirmed Limited Systemic Sclerosis which was then confirmed by my Rheumatologist following a barium meal swallow test showing esophegul dysmotility.


    Looking back, I had been getting cold hands in the winter for about 5 years and simply put it down to getting older or walking in colder places than I previously did.


    My hands and feet (often my arms and legs too) seem to always be cold and everything I touch (including water) feel freezing.  This and the faintness seem to have stopped my life in its tracks.  It's even hard to go outdoors now it is winter because the cold and the wind seem to get right through by shoes, trousers and gloves even though these are all thermal lined.


    My bowels now seem to be affected as I'm needing to use a laxative every day and everything I eat and drink makes me bloated.


    I tried rubber gloves to wash the car, do washing up etc. but the cold water seems to even penetrate these.  There seems to be so little I can now do and the whole thing seems to have progressed very quickly - I was pretty much my normal self until Jan 2015 and now feel almost useless.


    Is it normal for a disease like this to affect someone so rapidly - less than a year to go from a normal individual to being such a useless wreck - I thought these things tended to develop more slowly?


    The constant faintness is particularly worrying - does anyone have anything to say about this or anything that might help?


    Thanks for reading - I will post updates as they happen.

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