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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Hello Janet You've raised symptoms similar to a lot of us, the brain fog has been in many a post. I don't know if it's the sclero or the stress of living with a serious illness but my mind does not operate as effeciently as it once did, oh yes it operated efficiently once whatever anyone says! As far as personality changes...hmmm...might that be because I have a terrible disease that's altered my life, I am always in pain, always tired and always itch?!, having said that meds can effect behaviour as well. It helps others around you to acknowledge the behavioural changes and accept that although you have no control over it you are aware of it impact and realise it doesn't give you licence to do whatever. I recently started a new med and to say I was agitated is an understatement so I told my husband what was going on which he appreciated and could then work with me. I too am having headache/migraine issues after them being practically non existent for a 7 years respite period. Vascular headaches are a group of headache in which blood vessels dilate causing pain, this includes migraines, cluster headaches, and toxic headaches. As you can see I have been reading up on it! I don't know if sclero plays a part, there was some study in Russia where a lot of sclero people also had migraine but they could not determine migraine as a sclero symptom on one small study. I hope you get some answers, my rheumatologist said to see a neurologist but I can't be bothered and when I saw one some 20 years ago he said keep taking paonkillers and try yoga. I laughed in his face and walked out. Take care. Amanda P.S. Tearing up even with dry eyes...love it!
  2. Amanda Thorpe

    New Member Tawanda

    Hello Tawanda So glad you've found us, they recon we're rare critters but there's lots of us in them there hills! When diagnosed in 2007 all I wanted to do was see in the flesh someone else with sclero, just to know there was another human being living with what I was. It seems that we are an exclusive bunch but we're out there you just gotta find us...and you have. Now to the rheumatologist, please go back and tell him he knows nothing about sclero despite it being a rheumatic disease and him being a rheumatologist, he needs to back to medical school via charm shool and he should just deal with it! Alternatively refer him to this site. My sister was once told by a doctor that sclero was untreatable and she enlightened him with the facts, incurable but eminently treatable. As already suggested get a sclero expert on board as you can be treated just not cured. Also post often as you'll pick up lots of useful info, support and encouragement. Take care. Amanda
  3. Amanda Thorpe

    Ankle and Feet Skin Tight, Dry, and Cracked

    Hello Honey I too have immobile ankles and feet with the skin being so tight and unbelievably painful around the ankle! I use prescription creams and so forth, but nothing is going to make it like normal skin. I found it hard enough losing full mobility as someone who enjoyed exercising, for someone like yourself it must be doubly difficult. Please let us know how you get on at your next rheumatolgy visit and take care. Amanda
  4. Amanda Thorpe


    Hello Cher I have been on atarax for over a year and not had this side effect. I will see if I can find a list of side effects with one of my packs as it my be different from yours UK/US and let you know. Atarax can interact unfavourably with other drugs even ibuprofen and paracetamol, could it be a medication clash? I've just read a page on a medical site where people posted reviews of their experience with atarax but no one mentioned sweating. Some did however have really way out reactions to it, I was amazed! I guess therefore any reaction is possible? Having said that could it be coinsidence that these sweats started when you took atarax? It's natural to tie one thing in with another because we want to solve problems but it may not be the case. I hope you get to the bottom of it. Amanda
  5. Amanda Thorpe

    Lupus or Scleroderma, I am confused!

    Hello TOB Welcome and sorry you're in the difficult stage of not having a firm diagnosis. With scleroderma it's best diagnosed using a combo of info as bloodwork alone can't. I have diffuse SSc with a negative ANA and no idea about the SCL 70, I never asked and don't even know what it is! I do think that with no skin involvement it's even harder for you and the medical profession to nail it down. Jeannie's suggestion of a list is a great one and remember that you know best what's going on in your body. Challange what doctors tell you if it doesn't seem right and ask why not if they dismiss the sclero diagnosis. As you say you want neither sclero or lupus but which ever one you have, or overlap, you want to be diagnosed correctly so you can be treated correctly. Oh yes I forgot to say, get a lung function and echo done asap if you have not already. A dry cough and shortness of breath can indicate heart/lung involvement (although not necessarily!) so it's best to get it checked to be on the safe side. I'll be having both tests done shortly so get yours done and we can compare notes! Keep us posted and take care. Amanda
  6. Amanda Thorpe

    1st Raynaud's attack?

    Hello Red Or should I say hello Red, white and blue? :D Although I have raynauds it's not as bad as most peoples, I don't get the full span of colour changes and I also get cramp. A sclero nurse explained that raynauds can cause cramp in the hands and feet and as soon as I started warming them up in response to the cramp it went! You should get it checked out, although it may be a common part of sclero, there are treatments so the severity of it should be determined and managed. Oh yes, your nose can also be effected and mine has been in the past. When it's got cold I get an unpleasant sensation whilst it warms up. Hope this helps and take care. Amanda
  7. Amanda Thorpe

    Weight questions

    Hello Libby Welcome and glad you've posted. Weight gain or loss seems to be tied up with sclero and I am not sure if it's meds or the disease. Yes I know some meds are notorious for weight gain e.g. prednisilone and for some of us we have a radical lifestyle changes and become less active. My weight has gone up and down since I became ill and it has not all been tied up with medication. Before sclero bit I was a UK size 14, I then went down to size 8 at my most inactive and unwell. I am now a size 12 and seemed to go from a 10 to a 12 overnight! What I find weird is that I am more active now than when I was an 8 so the weight gain can't be because I am doing less and I am not on appetite increasing meds so not eating more. Also the weight is sitting in different places from what it did before so much so that my shape has changed from that of pear to apple! Mind you I can't complain because when you're apple shaped the blubbery bits are easier to hide! :D I have now reconciled myself to the fact that my weight may well yo yo so much that I'll be the one going ho! ho! in December. Seriously your point about the body retaining the weight to keep warm is an interesting one, the body could also be holding onto weight in response to the trauma of sclero. It having been suddenly reduced to a smaller size than it liked may be determined to not let this happen again by fighting to hold those fat reserves. It's like it has a mind of its own and I do wonder if a bit of horizon adjusting is required in relation to what size we can realistically achieve post sclero. Remember whether we're too skinny or too big we are amazing and unique because every day we do battle with sclero and win, win, win!! Take care. Amanda
  8. Amanda Thorpe


    Hello Anderson Welcome! Cellcept seems to be extremely effective and works well for those who tolerate it. I was on it for over a year and apart from some nausea, it gave me motion sickness, thought no other effects. However I have been off it now for about 4 weeks trying to determine if it is the culprit causing me endless headaches. If the cellcept gives you little or no effects persevere with it, I do believe it helped stabalise me and caused skin softening. Make sure the dosage is built up slowly and you have a blood test every 4/6 weeks to check in particular your liver function. Take care. Amanda
  9. Amanda Thorpe

    Another newcomer

    Hello Lynne Welcome to the forum this is a great place to get and give support and information. The doctor that gave you the photocopy, NHS finest no doubt. I have sent you a private message regarding your request to meet others in London, I am a member of the Scleroderma Society UK so hope I can help you out with this. Take care. Amanda
  10. Amanda Thorpe

    Very Frustrated, Could Use Some Direction

    Hello Stef I am so glad the appointment went well and although you may not yet have a definite diagnosis it's not because no one is interested or could not care less, it's because they're being thorough and professional which is how they should all be always! I hope that you now feel confident you're going to get somewhere, the right people are working for you and with you so that whatever outcome you get will be the right one. As I've said before we Sclerodermians are a very select group of people so should you become on of us be honoured! Take care. Amanda
  11. Amanda Thorpe

    Pregnancy question

    Razz I'm on the plane now! I know, what about velcro...let's stick the babies to us so there are no worries. I'd suggest super glue but it's a bit harsh for babies skin, not our of course we could easily have a few layers ripped off and never even miss it. Take care. Amanda
  12. Amanda Thorpe

    Pregnancy question

    Razz Remember babies bounce if dropped , my nephew was dropped (not by me!) and rolled off the bed a few times as a bouncing baby boy! Now he's a hilariously funny, hansome young man. In all seriousness I too have curled fingers and I also have no movement in my wrists. This means I can't properly hold babies so I miss out and will miss out when friends have babies. Some dear friends are about to have their first baby but I won't be able to hold him :angry: because although my family's bouncy I don't think everyone's is! Congratulations by the way, I never had a relationship with the one grandmother I had, your daughter and baby are going to be very blessed. Amanda
  13. Amanda Thorpe


    Hello Clem Although I don't have Sjogren's I did read up on a website for Sjogrens sometime ago on the forewarned is forearmed basis. A lot of the patients' stories mentioned actual eye pain, some described stabbing pain as an early symptom. There's a link on this site to it under patients' stories. As with sclero they often presented in different ways and not just with dry eyes. Hope this helps. Amanda P.S. My sister has follicular lupus and has in the past and is now suffering with very dry eyes.
  14. Amanda Thorpe


    Hello Snowbird I was given 2 tests to confirm the Raynaud's diagnosis and its severity. One was a nailfold capillary test where the look at the capillaries in the fingers under a microscope and the distortion of theses indicates disease and severity. I also had a thermal imaging test which involved having my hand in cold water for a number of minutes then it was viewed using a machine to see how quickly it warmed up and where. In conclusion I have Raynaud's but it's not as severe as it could be :) . My hands do not go red/white/blue and never have. Actually I think my feet are worse because they have shown a bluish tint before. From memory 95% of people with sclero have Raynaud's. Hope this helps. Amanda
  15. Amanda Thorpe

    Today's rheumatologist appointment

    Hello Erin You sclerodermian you! You are officially a member of the club, we don't admit any old riff raff you know. So the number has now gone up from 3000,000 to 3000,001, you are officially a statistic. This doctor you mention, is there a sign above the door that goes something along the lines of "give up hope all ye who enter here...?" You went into the office one thing and came out another, at least you didn't get turned into a frog. :) Take care. Amanda
  16. Amanda Thorpe

    Why not Ibuprofen?

    My mother was told to avoid Ibuprofen because of high blood pressure, how it effects it I don't know. It is also known to cause stomach bleeds and is no friend to those with gastro issues. A less commonly known side effect can be rebound headaches something I had found having used it for years for exactly that, headaches. I could have stood up and cheered (if I could have actually stood up at the time) when the doctor told me just that whilst I was in hospital in 2007. Different things work for different people and it is difficult sometimes to balance the need for pain relief with the need to lessen side effects. Amanda
  17. Amanda Thorpe

    I'm back!

    Hello Peanut I joined when you were having your transplant so don't actually know you. I read about your progress and intersted then read your own website. You have been through a lot but have come out the other side of it, clearly you have a lot of support here. I hope you eventually recover to that pre sclero state...normal. :) Take care. Amanda
  18. Interesting, which came first the chicken or the egg? I wonder if sclero has always been lurking in the body and because of this we were more suseptible to viruses etc which hit harder and immune system compromised out comes sclero. It's just waiting for its opportunity to come out, sorta Alien like. Of course I have absolutely no idea one way or the other! I never had any particular illness pre sclero apart from IC which is an auto immune disorder then came sclero and friends. Trauma seems to play a part as well and I have certainly had that! Amanda
  19. Amanda Thorpe

    Back on the good stuff

    Hello All Last year (sounds like a long long time ago) I stopped cellcept to see if it was the cause of headaches/migraine cycle and the verdict was inconclusive so I have gone back on it to see what happens. I was off it for 4 weeks and per my rheumatologist that was long enough for it to leave my system, it would be gone after 2 weeks and I gave it another 2 to see how things settled. Well not being a patient (pun intended) person I went straight back up to the max dose (no idea if I was supposed to or not as I never asked) and can say it does cause nausea for sure. Tuesday I went out in the car with my sister to shop but instead puked into a plastic bag as she drove me back home some 10 minutes into our journey. Whilst I was mid flow she asked me if there was a receipt in the bag (returning a jacket in it) and I said no but there were green flecks in it and I didn't remember eating anything green that morning. One thing I do notice on the cellcept is that my body temperature is raised and I get tingling in my hands but off it the pain in my feet was worse. Win some lose some I guess. Take care. Amanda
  20. Amanda Thorpe


    Hello Flower Glad you've joined us! :) You've been contending with illness for a number of years so no doubt you have a wealth of experience to share with us in the future. I am sorry you have multiple ulcers, they are painful and long lasting. :angry: Chronic pain can be very wearing, sapping your energy and enthusiasm as it makes itself the focal point. Be assured that you are not alone in this, many here live with chronic pain for one reason or another so you're in good company. There's a lot of support here and sharing with others in the know provides relief in itself. I hope your doctors are more helpful in the future and you get some relief from the pain. Take care and I look forward to getting to know you better as you post more. Amanda
  21. Amanda Thorpe

    Skin Fibrosis

    Hello Denise How annoying! :angry: If you can't get more info over the phone and have to wait until February it's going to be difficult for you both. There's little worse than not knowing and only having half the info because our mind love to fill in the blanks. Beware of too much internet searching as 1) you are not yet certain what you are dealing with and 2) a lot, particularly relating to scleroderma, can be inflammatory and lots of us here have scared ourselves witless reading it. I hope you can get more info prior to Feb, if not try not to worry because it has no effect over the outcome. If it does turn out to be sclero be assured that it's not the end of the road and you will get terrific support here. Take care. Amanda
  22. Amanda Thorpe

    My esophageal story

    Hello Mando I think Jeannie made a very pertinent point, why not sclero? On what basis is the doctor dismissing this, you have a collection of symptoms consistent with sclero. You need to make him give an account for his decision, clinical reasons why it's not sclero. "It just isn't," is not an answer. I hope you get an answer soon. Amanda
  23. Amanda Thorpe

    Back on the good stuff

    Thanks Judy :) If you're laughing you can't be crying Good things for you too. :D Amanda
  24. Amanda Thorpe

    Back on the good stuff

    Hello Lizzie Sorry you have been so ill and that you have to stop taking a drug that was helping you. You are obviously one of the "one in a hundred thousand" people who get the weird and unusual side effects. My mother once took a medication that had a rare side effect of "black tongue", no idea what that was and she didn't get it so my curiosity was never satisfied, how selfish can you get! Take care. Amanda
  25. Amanda Thorpe

    Back on the good stuff

    Hello Llbipp Thanks for the encouragement. I don't know anything about your illness but am glad cellcept is a better drug for you and that you found the cause of your migraines and were able to get rid of them. Having good doctors is half the battle and it's great when a doctor helps to alliveiate side effects. Take care. Amanda