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Everything posted by dimarzio

  1. 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.
  2. 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.
  3. 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.
  4. 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).
  5. 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?
  6. Thanks Jo - I think I've found the answer here, just in case anyone else has to have it done. They've just made the appointments but nobody has explained what is being done: 24 Hour Oesophageal pH Testing (NIH Derby Hospital).
  7. Thanks Jo, that sounds a better idea
  8. 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.
  9. 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.
  10. 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? Thanks
  11. dimarzio


    I've wondered about immunosuppresants, but my rheumatologist has never suggested these or even mentioned them. What happens when you get a virus or some other infection though?
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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 Insomnia 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.
  17. 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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