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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. For those with motility/bowel issues

    Andyko ...oh no not Normacol...yuck!!! I used this many pre sclero years ago and just the though of it makes me feel ill. Those awful nasty tasting little pellets trying to swallow them...gag...gag...gag...but it did work. Summer, sorry you're having this issue and I have nothing to offer other than can you get a different GI doctor as they are actually supposed to help! They may not have the expertise for sclero matters and I don't think you should just be left to get on with it. Take care. Amanda
  2. Swollen fingers and burning in legs

    Ann Forgot to mention... 75mg aspirin daily helps thin the blood and helps with EM, but check with your doctor first, as not everyone should be taking aspirin. A way to cool an area down is to put lotion on it and then put a fan on the area...ahhhhhhh. I have found that the up side of EM is that unlike most sclero's I am not always cold in fact I prefer winter to summer so living in the UK works well for me! Take care. Amanda
  3. Swollen fingers and burning in legs

    Hello Ann My guess and it's only a guess is erythromelalgia also known as erythermalgia. It's a rare disorder in which blood vessels, usually in the lower extremities, are episodically blocked and inflamed. There is severe burning pain and skin redness associated with this blood vessel blockage. The attacks are periodic and are commonly triggered by heat, alcohol consumption, or exertion. It can occur either as a primary or secondary disorder to an autoimmune disease. It can cause swelling as a symptom as well. You can get both EM and raynauds and some treatments for raynauds help EM, I have both and although the raynauds is more frequent the EM is more severe. Obviously speak to your doctor to get a firm diagnosis meantime elevating the effected area is supposed to help but avoid cooling it with cold treatments I.e. getting quick relief from submerging your hands in cold water as this can eventually make the EM worse and presumably if you have raynauds you'll end up with an attack of it! I hope this helps and there are EM sites it you google it. Take care. Amanda
  4. Bowel Issues

    Hello Jensue, I am so sorry you are having this issue, I have to admit that when first diagnosed I began investigating all possible symptoms and leakage was one that I dreaded. Thankfully I don't have this problem but as we all know with sclero you never know what you're gonna get...someone once said that about a box of chocolates. I did have contact with a sclero sufferer who had this problem and was having an experimental procedure involving electrodes being inserted which she would control with the press of a button and the electrodes would stimulate the muscle to do what it's supposed to do and close. Unfortunately she has not replied to recent emails so I can't find anymore out for you. :( When I was younger I heard about irritable bowel syndrome and thought how awful, embarrassing etc. having to talk about your bowels?! Well time passed and I was diagnosed with it (although now I think it was early sclero bowel involvement) and talked about it no end, don't get me wrong I didn't stand around at parties talking about it. :) I had no choice but to talk about it as it affected my work, where I went , etc., and I realised there was no shame in it. In fact the more I talked about it the more people realised how problematic it could be. I really appreciate you sharing this with us, as Janey said it's a quality of life issue and I hope others, there will no doubt be many, can give you real practical advice. Thanks again. Amanda
  5. Hello All Yes it's me again I am being greedy with 2 posts at once. :) I have been taking amitriptyline for about a week 10mg morning and evening for pain. Apart from a few days of being mega irritated I don't think I have had any side effects although my erythromyalgia (EM) is worse at present but I don't know if that's coincidental. I discovered in some old posts (searching for a friend re: Raynaud's) that some people found them intolerable. My questions are 1) How long before you got the full effect? 2) What side effects and did they go? 3) Did it improve your mood? Thank you in advance and anything else you want to share about your amitriptyline experience is greatly received. Take care. Amanda
  6. Ankle and Feet Skin Tight, Dry, and Cracked

    Honey Thanks for the update. I hope the CT goes well, of course now I have a story to tell about mine that did NOT and eventually they did it with my lying on my front so I could not see the THING instead seeing the room and most importantly for a claustrophobic...the door! I tried to climb off the table whilst the machine was moving me closer and closer to the THING. The original film only showed half my liver which I still say is better than none.Recently when I had my echo my liver suddenly popped into view and I explained to the tech that it was revenge for being excluded from the CT, my husband then tried to explain why the word Chardonnay was written next to it! Amanda
  7. How to handle difficult family members?

    Penny Alas our family can be comprised of people who's company we would NOT normally seek out if we were not related to them, I think everyone's got one like this in the woodwork. I did have a family member, now an ex, whose reaction to any situation/crisis they could not control was rage and blame, your brother sounds similar. Ultimately this behaviour is fuelled by fear, fear that really they are as helpless and powerless as everyone else. I have to confess I have great support from family and friends but even the well meaning friends can fail to understand the complexity of the disease. One friend asked how my skin disease was and I just smiled. Apart from sclero I have a close family member who can be difficult to be around because of their behaviour (negative, complaining, childlike, etc) and I have concluded that endlessly telling them the error of their ways is a watse of time so now I limit my time with them and will avoid them altogether when I feel it necessary. We always feel so responsible for family members and we're not, you are not responsible for your brother and I do not believe that any family is better than no family. Your brother decides how much of your illness he takes on board and no one will be able to make him take more on board until he wants to. I like the idea of the DVD but an "aha!" moment from him may be unlikely and he may continue to blame you, someone has to be responsible for this terrible thing happening to you and as there's no one else to blame he blames you. JanQ is right we have to change rather than wait on the other person to do so and remember we are changing to make it better for US not them. I wonder if keeping your brother at a distance may help both of you. I am sorry you have this to deal with on top of everything else, here on this forum we are for you, interested in you, supporting your decisions whatever they may be, hoping the best for you, laughing with you and crying for you. Take care. Amanda
  8. Polymyositis/Scleroderma overlap

    Hello Ladyhawke I have sclero and know nothing about PM so won't be able to help you there. I did just want to say that not exercising right now may be the best thing you can do. When I was becoming ill with sclero and obviously didn't know it I continued to exercise. This is despite being in real pain, picture it, no mobility in the ankles yet still climbing onto the cross trainer...dumb, dumb,dumb. I figured that although only doing 20 minutes slowly, previously did 45 fast, would be helpful, what I was trying to do was have some sort of control over my body but in reality I had none. It turned out to be the worse thing I could have done because I ended up with fasciitis which is an inflammation of the fascia and can be caused by over-exercise. My body was in pain, losing mobility and stamina and yet I insisted on exercising thinking a little was better than none -- wrong -- it should have been none! I understand the want to exercise, all I can say is for me I should have listened to my body and stopped much sooner. I know I will start again some time in the future but for now it's not an option. I hope this helps. Amanda
  9. Rheumatologist Update

    Honey, "May we all be restored"... then fought each other to be head of the queue. :) It's funny looking back at symptoms etc and realising it was sclero all along, finally 1+1 makes 2! Please let us know what the cardiologist says and yes it's great to be able to share our experiences and find we're not on our own it this, many have gone before us and many will come after us...of course we're the best bunch. Take care. Amanda
  10. 30th Birthday Party

    Hello Jeannie Hooray for good times and they're even better when enjoyed with our nearest and dearest. Maybe some of the photos could find their way to the photo gallery? I remember being 30 (now I sound ancient at only 40!) and how different life is now to what it was back then. I'd never ever have guessed the U turn my life would take within the following 10 years..would I change it...NEVER!!...I wouldn't be the person I am today otherwise. I wonder if your daughter feels older, I never do. I was communicating privately with one of our forum members who is younger than me and never thought of myself as old or older until I read in a forum post how pleased she was to have found someone her own age and it wasn't me! Oh I felt sooo old, it was totally weird! Take care Amanda
  11. Amitriptyline: How was it for you?

    Hello All Jeannie I also have mega vivid dreams now! I told my husband of one I had the other day because it was totally weird..it was like being in a disaster movie but the stragest thing was that at the end of the dream, like the end of these movies, I went to look in the group of "survivours" for my hubby and there he was BUT bearing in mind it's an amytriptiline fuelled dream the "survivours" were the content of my make up case all in the bath and I picked up my favourite red lip pencil overjoyed because that was my husband ! Let me just wave bye bye as I make my way to the funny farm. Piper, I'm with you if it works for the migraines any weight gain will be worth it. Eos, sorry it didn't help and glad the weight just came off, what a bonus. Amanda
  12. So far so good!

    Hello All Tonight I finally had my lung function test and echo done, 4 months late. Oh well better late than never and had I had to wait on the NHS the echo would have been in December (Dec 2008 I get an appointment for Dec 2009!) and never even got an appointment for the lung function. Thankfully I have a sort of private insurance from when I worked so was able to "go private" and get seen within days not months. :) Well for the echo the tech was lovely and I specifically asked her about PAH to which she said no obvious signs but the cardiologist will view the results for the conclusive answer. For the lung function the tech would give no hint so I now have to wait approx 10 days for the results to come to me. My oxygen saturation was 98% so I am assuming the lungs are clear also! Whilst this is all good news I just wonder why I get so out of breath? If they'd said the results show a problem I would not have been surprised in view of the breathing so now I am wondering what else it could be. It's got worse approx the last 4 months prior to that I've been getting out of breath since 2007. Maybe it's just that my body is used to doing less so when I do more it finds it harder than when I was always active? When I get the results I'll go back to my rheumatologist and see what he says but if you have any ideas bearing in mind you're not a doctor/nurse/tech blah blah. :D Take care. Amanda
  13. What is your dream vacation?

    Cher, isn't one The Quiet Man? My husband and I love that film! Christy, bring your umbrella and come stay with me! I'm not much into holidays, having lived abroad as a child all I wanted to do was come home and haven't left since. Mind you I would like to visit Israel, all the religious sites and then stay at the King David hotel, sit in the Slingshot bar and get wrecked! Anyway I'm now off to la la land to catch some z's...................zzzzzzzzzz. Amanda Can we have the clickable smile that yawns? It's sooo me.
  14. So far so good!

    Janey, the sats were while I was sitting. I did see an exercise bike and though oh no! It was a stationery test and I actually think it's quite hard. They peg your nose make you blow OUT OUT OUT into a tube until you see stars! And why talk to me when I am doing it? The dear tech must be married to a dentist. :D Lizzie, I'm gonna say it...you Northeners are supposed to be much more unfit than us Southeners...so the media would have you believe! All I can say about the appointment a year in advance is thanks a bunch Mrs T. :angry: Susie, thank you, you're very kind. I will let you know the official results when they're in. Now if they did turn out to be bad don't expect a serious post because I'll be laughin' my head off! Life is such fun!! Amanda
  15. Flare?

    Hello TJ I am sorry your husband's lost his job, that's hard anytime particularly in this climate. I'm on benefits and pension from early retirement, I went from working 5 days a week at a 20 year career to sitting on my duff 5 days a week and I'm only 40! Being housebound is hard to bear, not even being able to pop to the corner shop a minute away. The analogy of being imprisoned is a good one. How intersting that you should say about waking up and it all having been a dream. Today I was evaluating why I had not become more involved in something local to so with sclero and I realised it was because I assumed I would wake up one day and it would be gone, that I wasn't really a fully fledged sclerodermian. Well I am getting more involved now because I am a fully fledged sclerodermian and will be forever and ever! Although tomorrow you will still have sclero other things may be different and if not tomorrow the day after or the day after that. It DOES get better because even if the disease does not or our circumstances do not improve we do, the best in us comes roaring to the fore because sclerodermians are resiliant and determined even if we don't feel it. I do hope things improve for you quickly and meantime vent here so you don't have to carry it on your own. Take care. :) Amanda
  16. Feeling better these days

    Actually I feel that Shelley, as member number 1 has an obligation to be the first to demonstrate the Scleroderma Happy Dance If I had the equipment and know how to video myself and upload it I would. Please be advised that I would simply be making a complete idiot of myself and no one would find it as hilarious as me nor watch it as many times as me. I am my own fan club...see I really AM Simon Cowell! Amanda
  17. So far so good!

    Razz I went to the gym for years and it took me years to pluck up the courage to use a treadmill and when I did I loved it. Whatever you do DO NOT hit the red button, my ex brother in law once did this whilst at the gym and he did come flying off the treadmill for all to see, It's the emergency stop button. Mind you I suppose the only audience you'll have is your cat and they are very forgiving creatures. I know what you mean about the thought of exercising when you already feel exhausted, please let me know if it helps as I think it may be something I need to consider. Take care. Amanda
  18. Amitriptyline: How was it for you?

    Thanks Jensue and Lizzie, I forgot about the dry mouth particularly at night. I wonder if I should just take 20mg at night as opposed to a split dose? Unfortunately my general practitioner made no comment on dosage as the rheumatologist recommended it so I'm making it up as I go along. Although I want it for nerve pain my main aim at present is to eliminate/radically reduce the migraine. Lizzie, how long were you on it before it effected the migraines and how long did it take to build up the dosage? I do consider myself to be a happy/laugh a lot person but even I get laid low (mood) by sclero so I wondered if a bonus side effect (must be one out there) might be improved mood. Jensue you mentioned you have more tolerance and this has always been something I could do with more of! Happy days! -- as my sister's boyfriend always says mind you he's mad as a hatter and not just because he is dating my sister and by the way her butt is bigger than mine...she doesn't read this site, pity. Amanda
  19. Lupus or Scleroderma, I am confused!

    Hello TOB Firstly sorry but I can't help with the results but that you don't have lupus is a bonus. Are you able to see your doctor with the results for an opinion rather than having to wait until April? Like you I would not want to wait that long for a decision. I don't know where you're based, my hospital in London has a sclero advise line manned by the sclero nurses so we can get ad hoc advice, I don't know if anything like this is available to you. I hope you are able to get some info/advice well before April. I know it's easy to say and harder to so but try not to worry as it won't change the outcome. Take care. Amanda
  20. Flare?

    Hello All I have periods of getting overheated and sweating...yuck! It started again yesterday and all I was doing was washing my hair! In the end I de-clothed and sat in a towel waiting for it to pass. This comes and goes and I'd like to point out it's still winter at the moment. I am 40 years old and I am not aware of anyone in the family having early menopause so I don't think it's that. Oh well probably another weird sclero thing! Amanda
  21. Feeling better these days

    Hello Smac Way to go! You know when we feel better, however briefly, we achieve more and appreciate more than "normal" people who take feeling good for granted. I hope this lasts a long time for you so much so that it's a turning point for you and you don't look back! Regarding the sclero dance, I want to be a judge: "It was hideous, I mean really, really hideous!" See I can do it. Of course I would be referring to my own sclero dance! Take care. Amanda
  22. Motilium anyone?

    Hello Summer I use motillium for nausea/vomiting and although it's good for nausea not so much for when you're actually puking. I use it in suppository form as oral anti emetics seem rather pointless! It can make me drowsey but no effects other than that. I believe it's supposed to speed up digestive transit. Hope this helps. Amanda
  23. Amitriptyline: How was it for you?

    Hello Serena Yes the tiredness is an issue. It's good in that it helps me sleep but bad in that it's even harder to get up these days that normal! I think it might be helping with the migraines though, not with frequency but severity. Had one last week and have one now and it's not as bad as usual and last week normal pain meds contained it. Mind you I am supposed to be taking it for nerve pain and I don't know if it's helping this as I am still taking other pain meds. The idea is to phase them out and the ami in. We shall see what happens! :) Take care. Amanda
  24. So far so good!

    Hello Shelley Thanks for this, I did wonder if it was because I have become so inactive. How bizarre life is! Once upon a time I'd go running with my husband for miles before going to work and foolishly thought that exercising would keep me from ending up like my dear ole Ma, retired early due to ill health! She has heart disease and has had heart attacks. I think that I'd convinced myself that the tests would show there was something sinister going on so that if there was I would be prepared, I never want to be blindsided again as I was with the sclero diagnosis. :angry: Take care. Amanda
  25. Newbie seeks answers

    Hello Lucy Welcome to the forum and glad you have joined us! You may be new but you clearly have a handle on how this works, different for everybody, unpredictable, no black/white just lots of gray. My husband has always said I am a black/white person so having a gray disease is somewhat irksome! That you are concerned is understandable, the not knowing takes awhile to factor into day to day life but it will. Yes you should carry on regardless because even if your symptoms did develop into sclero you would still have to carry on regardless e.g. live your life from day to day. Of course life after sclero is very different to what it was before but it's still life and good life at that! I am a twin and have diffuse SSc diagnosed 18 months ago, my twin has another auto immune disease. I assume from your post your aunt did not fare well and I am sorry to hear this. I think the best thing you can do is what you are already doing, being informed, keeping an eye on your health without being obsessive and seeking support. Keep posting as we look forward to getting to know you better and want to support you all we can. Take care Amanda