Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello Sandcat

     

    Welcome and yes, the answer is yes. Scleroderma is a life limiting illness but we usually misunderstand what this means. When diagnosed in 2007, the answer to my life expectancy, was at least 10 years but here's the kicker, I was 39 years old at the time. The answer to how long I could have expected to live pre scleroderma would have been at least 30-40 years, so you see life limiting.

     

    It's not just cancer that's life limiting and it's not just 6 months to 2 years that constitutes a life limiting disease.

     

    I would answer yes, after all, if you're wrong I doubt anyone would sue you for continuing to live!

     

    Take care


  2. Quiltfairy, your brother is also welcome to swap with me, today I got up at 7:30 but not a.m. actually p.m. and no, I was not just resting my eyes...I wish!

     

    We tend to think a disease only serious if we can either see how it debilitates or we have been give a short time limit to live by. Well a life limiting (terminal) disease is not just cancer or something that kills us off within months or two years at most. When I saw the scleroderma expert for the first time I asked what my life expectancy was, I had no internal organ involvement but rapid, massive skin involvement, he gave me at least 10 years. I was 39 years old and should have expected to have at least 30 years at that point not just 10. I call that a life limiting illness. I call that a serious, life changing illness. I call that an illness your brother would not want in a hurry. 

     

    Funny, you think people would be glad to see us not as ill as we could be, better than expected, still able to have quality of life. I may well buck the trend and exceed 10 years but I don't think whatever it is will be what it would have been pre scleroderma. No one in their right mind would want that.

     

    Take care.


  3. Hello Shelley

     

    I wasn't as it happens, I was referring to the UK definition of diffuse systemic scleroderma because we've only got one and it includes skin involvement over the whole body within months. It's not unusual for a UK/US difference, we differ also regarding the extent of skin involvement needed to differentiate between limited and diffuse.

     

    Well I obviously have the worse type of diffuse scleroderma then, according to what constitutes rapid onset diffuse then.

     

    Sorry if I caused and confusion.

     

    Take care,


  4. Sorry to have missed this! Big  :emoticons-clap:  :emoticons-clap:  :emoticons-clap:  :emoticons-clap: to Gareth and big  :emoticons-clap:  :emoticons-clap:  :emoticons-clap:  :emoticons-clap: to Margaret as well. 

     

    Take care.


  5. Hello Charliehorse

     

    I love it when people come back after a long absence! Hooray!

     

    Whatever you do, see the doctor NOW! Scleroderma, especially coupled with Raynaud's, is particularly unpredictable and savage so to be quite frank, anything could be going on with your finger. Although it might have been sore for a long time it might have something new going on with it, infection maybe?

     

    What I do know is that things can turn on a dime on a painful hand one day can be infected to the point of being at risk the next. Sorry, talking about myself but you get my drift. Make sure you choose a good doctor and have you had a recent blood test in case there's anything more sinister at play?

     

    Take care and let us know, won't you?


  6. Hello Greypilgrim
     
    Interesting question but I think the answer is no. Part of the diagnosis of diffuse systemic scleroderma is rapid skin involvement. Part of the diagnosis of limited systemic scleroderma is slow skin involvement, as in can take months or years.
     
    Typically limited systemic scleroderma starts with skin involvement on the hands, maybe forearms, feet, lower legs and the unwanted and unpleasant changes of the face and facial skin. Usually this involvement is mild, occurring over many years. Internal organs can be involved, as with diffuse, with gastrointestinal problems being common. Raynaud's Phenomenon usually precedes any skin changes, by months or even years with the eventual skin changes being mild. About 70% of people with systemic scleroderma have the limited form.
     
    Typically diffuse systemic scleroderma starts with rapid skin involvement that can spread over the body within months. Skin changes affect the hands, forearms, feet, lower legs and also the upper arms, thighs and trunk. Internal organ involvement can also be rapid and life threatening, with immunosuppressant therapy commonly prescribed early on. Raynaud's Phenomenon can occur at the same time as the skin changes or one can quickly follow the other.
     
    Both types of systemic scleroderma can affect the internal organs and can be life threatening so both need careful monitoring in the early years.

     
    Having considered things I have to say that, no, I do not know of a diagnosis of diffuse systemic scleroderma with skin involvement coming on months or years later. By definition that would have to be a different disease surely? How could it be diffuse systemic scleroderma if rapid onset widespread skin involvement is not only a symptom of diffuse but one that differentiates between limited and diffuse.

     

    What about either scleroderma sine scleroderma or scleroderma sans sclerodermaScleroderma without skin involvement. As per our resources:
     
    "Sometimes Diffuse Systemic Scleroderma leaves the skin and joints untouched, and affects only the connective tissue of the digestive system or some other internal body system. In the absence of visible skin involvement, "Scleroderma sine Scleroderma," is diagnosed, which basically means "Diffuse Scleroderma without Scleroderma (skin involvement)."

    In Scleroderma sans Scleroderma, Raynaud's may or may not be present. The usual presentation is with pulmonary (lung) fibrosis, and/or Scleroderma renal (kidney) crisis, and/or cardiac (heart) disease, and/or gastrointestinal disease. Antinuclear antibodies (ANA) may sometimes (but not necessarily) be present (Scl-70, ACA.)"

     

    Remember that I am not medically trained and have simply told it as I understand it, I hope it helps. You might find my blog about this subject interesting, "Diffuse or limited, that is the question, scleroderma by any other name".

     

    Take care.


  7. Hello Kamlesh

     

    Welcome back! I remember you and am so pleased to hear from you again although not because of an increase of symptoms. Someone told me that the medical community are coming to the conclusion that fundoplications do not work for people with scleroderma and you are not the only person I have heard say theirs has failed.

     

    Now pain is something I can discuss in the first person, I wish it was not. This week I had a lumbar sympathetic block on the left side and wait to see the effects of it fully manifest themselves. Should it then back I go for more of the same. Other than that it's medication and distraction. I am actually in a good place because the majority of my pain is now only flared into action with movement so if I don't walk, use my hands and so forth, it's not so bad, really.

     

    I do wish that pain was more understood, more recognised, more treated. 

     

    I found that heat helps sciatic pain, well it did mine anyways, that and sleeping with a folded up towel under the arch of the back with a view to supporting the arch.

     

    I really am glad to see you again, I just wish it was for different reasons.

     

    Take care.


  8. Shelley, as unusual as it is for my posts to be opaque  :wacko:  :blink:  :lol:!! 

     

    As it happens I think that the symptoms are caused by neuropathy and pregabalin. Good eh? I don't know whether the flare of pins and needles and burning is because of the neuropathy increasing or the pregabalin side effects because, yes you guessed it, the side effects and neuropathy are the same. So I burn, prickle, pins and needles randomly with no way of knowing the cause. Really?


  9. Hello Pinetree

     

    Have a read of my blog You like me, you really like me! because when first ill it is usual, unfortunately, to have our symptoms under appreciated by a doctor somewhere along our journey. We so want to trust our doctor, believe them competent if not expert in scleroderma and if we like each other...oh such joy! Alas this often fails or is never present to start with, we all long for it because who wants to grapple with personality and ego when already really in or in pain? Not me and add to that struggling to survive a relentless disease...really not me!

     

    Not only do we have to be knowledgeable about our disease so we can educate doctors as necessary but sometimes we encounter attitudes and egos along the way but when we do we really can't afford to let it affect our treatment. In other words we have to, as Sweet so succinctly puts it, be our own advocates or try as best we can.

     

    Take care.


  10. Isn't it amazing just how painful infection is?If you have any doubt let me assure you that it can cause pain like you've never known.

     

    I have had cellulitis in my right hand, left thigh, right shin and right toe. For my hand I had 10 days in hospital with IV antibiotics (sudden, high temperature with erratic behaviour) took me to hospital not the pain, this wasn't because it didn't hurt but because I was used to grinning and bearing pain from scleroderma! Mind you whilst in hospital I longed for them to relieve me of my hand, see my blog The Nurse and the Cannula for more details. It was excruciating and I longed for them to operate but they didn't. For my left thigh I had IV antibiotics at home, no pain thankfully and the reason for IV instead of oral antibiotics was because the infection was too close to my femoral artery. For my right shin I had IV antibiotics because it was right on the bone and I ended up in hospital for 5 days because of dehydration and AKI. For the right toe 4 weeks of oral antibiotics and it's only because the pain quickly improved that I settled for tablets!

     

    When my foot ulcers were infected they became more painful as well as more fragrant and gooey! 

     

    Take care.


  11. Hello Pinetree

     

    Fab for wanting to upload your photos. Holiday snaps are just so last year!

     

    A week off work? You might need longer for sure. Are you office based, can you work from home? I know that you can argue that going back to work sooner would also be beneficial so just have a good think about it. It's no small thing what you've had done.

     

    Of course the time will come (I insist) when it all heals up and this raw rather unpleasant phase is a memory. Mid December I had my big toenails removed, somewhat of a lesser procedure than yours, but I wondered if they'd ever heal. Of course I had pre and post op infections and am still having to bandage part of the right toe but the left has actually healed! Hooray!

     

    We with scleroderma may be slow but we get there!

     

    Take care.


  12. Hello Pinetree

     

    Now it's over I really hope it heals well. We now know that scleroderma does not cause slow healing but of course we do know that lack of blood flow can cause issues with healing.

     

    Keep the finger clean and keep the whole hand warm, in fact keep yourself warm because when the body gets cold it takes blood from the extremities to keep the heart and brain warm. No point warming the hands if you are cold! You are no doubt an expert but we have a number of videos about Raynaud's.

     

    As you seem to be coping so well may I ask if you have considered adding any photos of said finger to our photo gallery? Totally up to you, no pressure.

     

    Take care.


  13. Thanks so much everyone! Well whatever it was it has gone as soon as it came, I have no idea what or why I am just so glad it has gone!

     

    Shelley, I wondered about a two in particular that you mentioned, when medication ebbs and of course the distraction thing. It has been about 3 years since my mp3 player (other devices available) has been my bedside companion (sorry Michael!) and I have the earphones in all the time I am in bed and I fall asleep listening quietly to music or talk radio. I crank up the volume as necessary!

     

    Sweet, that would correlate with you, it comes for a few days then goes again. One of those weird no doubt sclero related symptoms we will never actually pin down.

     

    Thanks again!


  14. Hello All

     

    Now I know that you're not medically trained so I am not after a diagnosis, rather I am curious to know what people think.. 

     

    During my first years with scleroderma I also had erythromelalgia which caused a burning sensation in my feet, legs and hands in addition to which the skin on these areas was bright red and you could literally feel the heat coming off of my legs. It was so hot that even in winter I could only have a thin blanket over the affected areas as the heat coming from my legs was enough to keep me warm!

     

    Well now I have the burning (and prickling) without the redness and heat in my hands, feet and legs. However this only seems to be at night.  I have neuropathic pain in my feet hands and arms so I wondered if it was more of the same but why is it only an issue at night? I sleep during the day as well you see. 

     

    Answers on the back of a postcard! Not really a post will suffice!

     

    Take care.


  15. Hello Pinetree

     

    I despair! Something can be done and should have been earlier!

     

    I am so very sorry and your fear is totally understandable, pain is on most people's top 10 things to fear. You need referral to pain management having said that you should have a pre assessment prior to surgery and that's when to raise your concerns and do not be fobbed off, get the specifics. I recently has two pre assessments and pain control was my main concern. You have to ask what is going to be done for you, I suspect something intravenous and with all the anti sickness drugs around there is no need to be sick either, whether from the pain medication or anesthetic. Things like domperidone and metaclopromide work by speeding up gastric emptying whereas something like ondansetron (used for sickness in cancer patients and my favourite) blocks chemicals to the brain. There's also buccastem and cyclizine so plenty to choose from. Apart from being unpleasant, the act of vomiting is rather violent and makes anything painful more so after it's been operated on.

     

    I don't know whether your care is ultimately under a scleroderma expert, we recommend them because they are exactly that, expert in caring for all aspects of this disease and coordinate your care. A general practitioner stating that nothing can be done can always be nudged in the direction of your expert.

     

    Please let us know how you get on and take care.


  16. Hello Marcia

     

    The best thing you have going for you is a doctor willing to treat you with an open mind. Although you have scleroderma antibodies you don't have enough symptoms to support a diagnosis, it is possible that you might develop them but then again you might not. That no one can tell you but as already said your doctor appears to be keeping an open mind, if not I guess they would have simply sent you off, without medication or a further appointment.

     

    As it happens I have scleroderma and a negative SCL-70 & ANA. whatever happens my blood work is negative.

     

    Take care.


  17. Hello Hopforhope

     

    Welcome to the forums and I am sorry that your sister has scleroderma. I have diffuse systemic scleroderma, morphea and bullous morphea having been diagnosed 7 years ago. I am with Jo in that I stick with prescribed, known medication. That's not to say I would not use any "natural" remedies if I found any that helped, after checking with, my doctor of course.

     

    Take care.


  18. Hello Jenny
     
    Welcome and I am sorry your daughter has en coup de sabre. You are in the right place for the best information and support for any type of scleroderma.
     
    Any type of disease is hard to bear especially if it affects your child, the good news is that en coup de sabre is a type of localized scleroderma and therefore does not affect the internal organs or life expectancy. That said it can sometimes cause other symptoms, 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.

     

    Take care and keep posting.


  19. :woohoo: HAPPY BIRTHDAY to the ISN :thank-you-2: 

     

     

     

    What a privilege to be part of this amazing organisation that changes the lives of people with scleroderma and related illnesses and their family and friends. For 17 years, Shelley Ensz, with the same certainty of night following day, has kept the ISN online for the benefit of us all.  Thank you to both! :balloons:  :balloons: 


  20. Hello Buttons

     

    Yep, poor prep! That's what I was told when I had the procedure but no pain. However, when I had one pre Scleroderma diagnosis (IBS diagnosis but I wonder if actually Scleroderma) and I apparently started swearing at the doctor insisting he stop! Now that one was painful hence shouting STOP.

     

    Good news about the results!!

     

    Take care.


  21. Hello Greypilgrim

     

    Now you have had the stamp of legitimacy on your forehead! There's no going back now!

     

    Well, with limited scleroderma you will be pleased to know that it is slower in onset, slower in progression and more favourable in outcome than diffuse. However, being scleroderma it can still be like handling a bag of snakes and is no walk in the park but you now know where you stand and have a good medical team behind you.

     

    Take care.