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Amanda Thorpe

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Posts posted by Amanda Thorpe

  1. Quiltfairy, if I commented on the fact that some people we know, who are perfectly healthy, also want a disease I would have to ban myself from the forums. Forever!


    I would also have to join you among the throng of the "walking dead" if I succumbed to outcomes predicted by other website. When diagnosed with myocardial fibrosis I checked out an established site and one not so, the first outlined treatments and possible outcomes, the second outlined IT'S TERMINAL! Gimme a break.


    Cyberchondria? Is it contagious? 


    Take care.

  2. Hello Nick


    Have a look at  my previous thread about erythromelalgia and Button's thread as its been discussed before. It's a disease in its own right as well as being a "friend" joining others even Raynaud's which would appear to be its polar opposite.


    I suffered a lot from erythromelalgia when newly diagnosed with scleroderma. It affected my hands, feet and legs, especially my thighs. When affected these areas would be bright red and so hot that you could feel the heat coming off of them without even touching them. Although its caused by the over dilation of the blood vessels, medication that causes blood vessels to dilate, as well as blood thinners, can help. The idea is that if you keep the blood vessels open, there is less likely to be a sudden dilation and the thinner the blood the better the rush. Yeah, sounds weird I know but they helped.


    I hope this helps and take care.

  3. Hello Barefut

    My house is often a mess and there's only two of us and a cat! Goodness only knows what it would look like if the kids were back in the mix.

    I have a cleaner come every other week and after she goes I enjoy the smell and sight of a clean home...ahhh...then the hob is dirty, the kitchen floor crunchy, cat fur visible on the light coloured carpet, bathroom sink quickly succumbs to soap scum and I lie in bed and look at the dust and ceiling cobwebs. Even though I am the right side of a flare I still can't clean house!

    Like you, I have had to just get used to it, suck it up so to speak, and really, if I have energy I'd rather do something else with it and anyways, when it comes to home we'd rather have home sweet home than home clean home. Right?

    Looking forward to the next installment.

    Take care.

  4. Oh, why do they do it to us!? These blessed "little" creatures that move into our homes and hearts...okay I know most people actually move their pets in but not ours, she moved in...and once established rule the roost then break our hearts when they die.  My previous cat was blind in one eye, deaf in one ear, had bad teeth and they smelled it but he was too old to have surgery and let's not forget the kitty alzheimer', I kid you not, we had him for 17 years whilst he decomposed and then died. That's how he smelled anyways but still slept on my pillow and I never had the heart to protest.


    Quiltfairy I am so glad your dog has thus far survived. What they bring to us whilst with us, however long or short is priceless. Yeah, I know you could say that about some vets bills too! :lol:  :lol: 


    Take care.

  5. Can I add to the question, what about surgery directly involving tight, hard skin?


    When I had a biopsy pre diagnosis and when I had my big toe nails removed, the stitching was problematic. As the skin was tight it wouldn't stretch, actually tearing instead.


    Should this ever prevent surgery? When I had cellulitis in my right hand they didn't operate to relieve the infection because of the scleroderma and I wonder how the wound would have been stitched up had they operated?


    I'm sorry Gareth might need surgery, he certainly had been through it. Whatever happens, I hope Gareth gets relief/better.


    Take care.

  6. Hello Quiltfairy


    I am really sorry to hear this. Having just escaped from a major flare, I wouldn't want it for anyone else. Ever.


    Shelley is quite right, the path of scleroderma is by no means certain.


    Although my flare's ended, I am still wheelchair dependant, using a stair lift and commode. Although fatigue is better and pain better, (thanks to foot ulcers healing) I am still disabled and reliant on my husband and others on a daily basis.


    I also reckon that your beloved pets give you more than you realise. When our beloved pusscat joined our home she made a tremendous difference to my quality of life and continues to do so although I have to admit that during my flare I had help caring for her when my husband was out (no one told our cat she was supposed to be a self sufficient species) so I get the concern about taking care of your dogs.


    Other than check out the possibilities for your future what else can you do? Perhaps you could consider help with your pain levels because not all options are narcotic based?


    Thank you for sharing this and I didn't get a sense of complaining but rather a sense of someone taking the control that's available, unprepared to simply roll over, someone determined to have the best future they can and I hope that you do and that we're part of it.


    Take care.

  7. Hello Nick

    Welcome and you've got a very proactive general practitioner. That's not always a good thing though, ironically! Well, I guess it's better than one that does nothing.

    Many people have primary Raynaud's but a small percentage of people with Raynaud's have scleroderma. Yes it can be a red flag for scleroderma which may well be why your general practitioner is referring you to a rheumatologist. Unfortunately there is no one test to rule scleroderma in or out.

    Jo's given you some great links and I can attest to the fact that blood tests aren't an indisputable indicator of this disease. I have systemic scleroderma but my blood work is negative, always has been.

    Scleroderma should only be diagnosed based on clinical symptoms and according to your post you only have one but as you say, you've not covered everything.

    By all means research but stay on this site, it's the best one and keep posting.

    Take care.

  8. Hello Judy


    I am also sorry that things aren't great for you either.


    Scleroderma, without a doubt can wax and wane. Whether it's considered a flare medically is another matter as I've only ever heard that it plateaus after 3-5 years. Maybe that's localised as I know of no one with systemic who had experienced this and it certainly ain't my experience!


    That would mean we'd all improve after a few years or stop getting worse. Really?


    Anyways, I am sorry you're also going through the wringer. You are also one of us forever so keep us posted.


    Take care.

  9. Hello Andee


    My skin tightening happened so fast. I don't think there are any predictors I can tell you to look out for. Example, I had swelling, pins and needles in my hands at the beginning of scleroderma and now have sclerodactyly (tight skin on the hands restricting the joints) but other people also have swelling and pain in the beginning but don't have tight skin on their hands now.


    We are all so different, we have our own tailor made version of this disease and your scleroderma will be exactly that, yours!


    Take care.





  10. Hello Miocean


    Sorry to come in so late! Sorry you're in hospital and for so long. As miserable as hospital can be you know that you need to be there and it's part of recovering. I just hope it's quick for you. 


    I usually take my own bedding too, on one occasion I said that I did not want a health care assistant to change my bed but she began to do so after I left the bay. To cut a long story short I lost a pillow case to the set because the health care assistant had put it in the laundry and it was never seen again!


    My survival techniques for hospital stays:


    1) Family. My husband is at my side, clearly he's my first choice but if not, my sister or my mother or friends

    2) Endless supply of proper coffee from the resident coffee shop accompanied by little goodies from said shop

    3) NEVER eat hospital food, my family supply me with food from elsewhere

    4) Tune in and cop out. Plug into your music or radio and thereby tune out everyone else

    5) Sleep


    In short eat, sleep, repeat!


    I hope you're home soon and take care.

  11. Hello LisaB
    Welcome! I am sorry your daughter has plaque morphea, a type of localised scleroderma but you're in the right place for information about scleroderma from the very people living with it, like me! As it happens, I have both diffuse systemic scleroderma, morphea  and bullous morphea which is a rare, blistering type of the disease.
    Firstly, morphea can begin to fade within 3 to 5 years, even without treatment and plaque morphea only affects the skin, not the underlying tissue or joints. Currently UVA-1 Phototherapy is recommended as the first line treatment and has good results however there are only about 3 centres in the UK that offer it.
    Methotrexate is a very toxic drug with many side effects, as you know, and isn't actually recommended for plaque morphea unless prescribed and monitored by a scleroderma expert, see list A & list B especially one that treats juvenile scleroderma. No disrespect to your general practitioner or other doctor(s) treating your daughter but scleroderma is extremely complex, even types that  just affect the skin and methotrexate is a serious drug so whether to use it or not is best determined by someone who knows the disease. We always recommend treatment by a scleroderma expert, as in someone on the list NOT a doctor who thinks they're an expert!
    I found your last paragraph bizarre, that other symptoms aren't being considered because they're nowhere near the patches? Say what? I am assuming this idea came from your daughter's medical team but here's the thing:


    "A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up."


    I can't say for sure, but I can say it's possible that the other symptoms your daughter is having are actually caused by the scleroderma...irrespective of where the plaques are! That localised scleroderma can cause symptoms usually associated with the systemic form of the disease is not widely known and I certainly wouldn't expect your daughter's general practitioner to know this BUT I would a scleroderma expert too!


    I hope that this information is helpful to you and your daughter. Scleroderma is a difficult disease to have for many reasons like its unpredictability and its rarity but there are things you can do like getting informed, having the right medical team and speaking to people living with the disease. It's marvellous to see all that you're trying to do for your daughter, I hope she fares well and please keep posting.


    Take care.

  12. Hello Amm55


    Sorry but I'm with Jo, it could be anything.


    I have tight skin and at diagnosis had it almost everywhere but I never had numbness or tingling in the area beforehand (see below). Afterwards and still now I have tingling and pins and needles underneath the tight skin. That's from neuropathy caused by the tight skin and let me say the pain can be ferocious.


    I know that when you have scleroderma the temptation is to park everything at its door but it's not always the culprit.


    See your doctor just in case it's something sinister at worse or something else at best and please let us know.


    Take care.


    (search the site for numbness, there's a lot of talk about it as a symptom)

  13. "It's normal to encounter more challenges at the ten or twenty year mark, with or without treatment of any sort."


    Shelley, I had no idea and am two years short of my own ten year anniversary as it happens.


    Interestingly, when I first saw my scleroderma expert and asked what my life expectancy was, at least 10 years was the reply I was given. At that point I had no internal organ involvement and found the reply interesting. Normally you hear the reply to life expectancy in terms of no more than, not at least!


    This would make sense as the doctor would have known that things can change at the 10 year mark.


    Well, I shall have to wait and see what happens two years from now. It's been am interesting journey thus far and at least I know that will continue!


    Of course nothing could change and I could plod along very much as before, awaiting the 20 year mark etc. Scleroderma is nothing if not unpredictable and we all have our own experience of it so let's see what happens next!


    Take care.

  14. Hello Quiltfairy


    Wow, now that's a reason!


    I had migraines on and off my whole life, from stomach arches as a toddler (apparently how they feel them), returning as a teenager, then again in my 20's, then 30's and finally returning the first two years of scleroderma.


    At that time I had no internal organ involvement and the migraines were ferocious. I would vomit, interfering with my medication for scleroderma. I would have to have my husband take me to hospital for an injection every time and although it worked, it took longer and was less effective each time. Had I been able to lose either migraines or scleroderma at that time, I would have opted for the migraines!


    When I started amlodopine for high blood pressure they went away for good. Now if I get a bad headache or one that lasts too long, I start to panic.


    You have my hooray!, yippee!, alright!, way to go! and sincere good wishes for the successful surgery that freed you from the dreaded migraine. May they NEVER return.


    Take care.

  15. Hello Quiltfairy


    I am glad that your neck surgery went well, it's routine surgery but one of those areas that a small mistake would be catastrophic. I don't know why you had it done but I hope whatever the reasons have been met.


    My mother is 69 and also has health issues, starting with 4 heart attacks, the first of which was before the age of 50. I know that she has fibromyalgia but I bet my butt she also has an underlying autoimmune issue. Mind you what I want to know is why my identical twin does not have an autoimmune disease, if not scleroderma. I mean, really?


    Take care.

  16. Hello Maz


    I am sorry to hear this about your husband.


    You say that the treatment won't help in the end, have they said that Geoff is now terminal? 


    It's a hard balance to strike, when to medicate and when to stop and different for everyone. If that's were you guys are I am really sorry.


    We have all probably talked about the quality vs quantity debate but it takes on a whole new meaning when where you're at really falls into only one category. 


    Take care.

  17. Dear Northstarhope


    I have just read this and had to say how sorry and saddened I am to read this. I know what a tremendous support you are and have been to your sister. I also know that your husband was in turn your support.


    I am so very sorry and thank you for sharing this with us, what a privilege that you would think of us at a time like this.


    Take care.

  18. Hello Mystique123

    I'm with Jo, go on the symptoms. Over the years we've had many, many, many enquires about blood work and what it means for someone. On its own it can be as good as useless, in conjunction with symptoms and test results (as in capillaroscopy) it can help to diagnose and further categorise the type of scleroderma.

    Raynaud's is, as you know, found either on its own or in conjunction with autoimmune diseases so it can be a significant maker but your capillaroscopy was normal.

    Are you under the care of a scleroderma expert? See the link on our home page because this is your best bet if you're trying to establish what your actual diagnosis is. All I can do is share my experience and knowledge in the hope that it might lend you support.

    When we're trying to figure out what's wrong with us anything and everything does not necessarily help to do so.

    Take care and keep posting.

  19. Hello Buttons


    It's great that you've been able to build up to a serious amount of exercise. I have just started small exercises using a resistance band and the best thing about it is that my husband joins me. I never thought that I'd work out again let alone with him. Now it may involve me sitting on the couch or lying on the floor and what I do may be a mere warm up compared to what I once did but hey! Who cares!


    Keep up the good work one and all!


    Take care.

  20. Thanks Kathy and sorry I wasn't clear, I had migraines but thankfully have not since 2009. I pin it on amlodipine which I was given for high blood pressure and have been on it ever since. When I have had a string of bad headaches, after a few days I do get twitchy and can't tell you how happy I am when they go. Oh, what a relief it is!


    Take care.

  21. Hello Ronald,


    Over the years the main cause of death in scleroderma has changed, it was from kidney involvement and is now, I believe, lung involvement. However, this is not because lung involvement has become worse or ever was worse but because survival of a renal crisis has improved. Doctors are now aware of renal crises in scleroderma, I have a friend who had a renal crisis some 20+ years ago and nearly died before they tied it to the scleroderma, today they would be more on the ball and as we know, prompt diagnosis also enables prompt treatment.


    Now lung involvement, including pulmonary fibrosis and pulmonary hypertension, is the most critical symptom. Well that's what it says "on paper" but of course the most critical symptom is the one that affects the individual the worst. I have a friend with complete gastric failure, the doctors pronounced her terminal but she's still alive and has even gained weight albeit through TPN (total parenteral nutrition). She was advised that gastrointestinal involvement was the biggest killer and I have also read that somewhere myself. I myself have myocardial fibrosis and had a 2 year life expectancy back in 2010 but thanks to a biventricular ICD I'm still here!


    I am sure that statistically something or another is more likely to kill in systemic scleroderma but then how accurate are the stats and what about individual circumstances? Firstly stats, there must be as many undiagnosed and misdiagnosed people with scleroderma as there are those diagnosed with it and I wonder what they die of and whether that would shift the focus from lung back to kidney or to the heart or remain on the lung? Of course personal circumstances are also a big player, someone with systemic scleroderma living in the US who has say moderate to severe pulmonary hypertension may well live longer than someone living in India with say complete gastric failure. Someone with pulmonary fibrosis living in the UK, diagnosed and treated immediately may well live longer that someone with kidney involvement, misdiagnosed and then given high dose steroids. It's swings and roundabouts for sure!


    For you the priorities are diagnosis of the systemic involvement, which you now have, then treatment which you will soon have hopefully and support which will be ongoing if you stick around...I means as in if you choose to keep posting!


    I am still amazed at how people buck the trend and continue to live for years when they should in fact have kicked the bucket or passed over or whatever euphemism is preferred. Remember that you have lived for nearly 30 years with this disease so you have had a good long run and it's perfectly possible that you will continue to do so! Clearly you're doing many things right!


    Take care.