Question:
– Hide quoted text — Show quoted text – Hi all—just found this group tonight, and hoping for a little cheerful group commiserating…are there any others dealing with peripheral neuropathy? I have neuropathy in my hands and feet, with both feet affected by charcot joint syndrome, and am finding myself less and less able to cope, and less and less able to adjust to the idea that I will live the rest of my life like this, with only the possibility/probability that it will worsen. I am a nurse, and having to quit my job in the newborn intensive care unit to do a ‘desk job’ because i can no longer tolerate being on my feet and am not able to hold/grip/open etc with my hands…i’m becoming disabled, and i don’t like that feeling… I’ve also just been diagnosed with retinopathy in my left eye, and am terrified of becoming blind…with a six month waiting list to be seen at my local eye clinic for evaluation regarding laser surgery, i am getting frantic… More and more things are going wrong, and I need a little encouragement…please… thanks in advance, Anna
I know nothing of your problems and can only guess at what you might be going through in your mind. But – one thing is clear, from what you say it is clear that you are not short of the greu stuff<G otherwise you wouldn’t be in the job you are in. A year ago I couldn’t even begin to imagine what it must be like to be disabled let alone become so, after haveing good health for as long as I have. Now I can see clearer because I am heading down that road myself, albeit slowly. It is very hard to adjust but as you well know from your work, the human mind and body are wonderful at adapting and human ingenuity is exceptional. You have it in you to get through this, it won’t be easy but then nothing worthwhile is. The thin that I think is the most terrifying is the massive lifestyle changes that might be ahead. But they won’t all have to be made in an instant and things will change slowly. If you learn to adjust at the same pace you might be surprised at what you can do. You just need to accept that things will never go back to the way they were. What might help is if you try to discover something you can focus on. Like a new vocation or interest which you might like to have a go at and which will alow you to do or participate in in spite of the disabilities that are creeping up on you. Your ingenuity and imagination are tools that will make all the difference. My mother at 80 is virtualy crippled and housebound. She does not look her age and though badly overweight, is still not bad looking. I don’t see her as often as I like but when I go over to visit, we sit for hours yakking about anything and everything. She has a good memory and intellect and sometimes I am amazed at the things she says. One day I said that she ought to write down some of her memories and observations as well as some of the poems she infrequently writes. That was a few years ago now. Last year she beamed with pride as she showed me a few pages of a magazine article that had been pulled out by my ex-sister in law and taken around to her. "Is this you" my sister in law enquired. The article was quite long and was a narative about her daily life, what she does and thinks. I read it as my sister in law nattered on, clearly impressed. I cannot begin to explain what I felt after reading the very personal account of a lonely old womans life. But I was very very proud and impressed. My mum said that the money the publishers sent to her was used to get my last birthday present – as well as pay off a few bills. I wish she would continue to write but she says that she does not have the patience with herself. I asked her what prompted her, was it me mentioning it? No, she decided she was bored and fed up with her life and all the dificulties and one morning [03:00 am] set about writing it all down to get it out of her system. Perhaps your experience would be of value to others who might be in a similar situation and just as frightened as you are. I am sure you have hidden talents that so far have not shown through for one reason or another. Perhaps there is an opportunity in the offing here for them to see the light of day. Cheer up chuck…..for every piece of crap life throws at you there is a little bit of good fortune around the corner. This is just another of lifes little exams and you have to study and pass them. You have done it before and you can do it again. Pete Pete – Diagnosed 20/03/03 Type II D&E + Gliclazide
Response:
– Hide quoted text — Show quoted text – Hi all—just found this group tonight, and hoping for a little cheerful group commiserating…are there any others dealing with peripheral neuropathy? I have neuropathy in my hands and feet, with both feet affected by charcot joint syndrome, and am finding myself less and less able to cope, and less and less able to adjust to the idea that I will live the rest of my life like this, with only the possibility/probability that it will worsen. I am a nurse, and having to quit my job in the newborn intensive care unit to do a ‘desk job’ because i can no longer tolerate being on my feet and am not able to hold/grip/open etc with my hands…i’m becoming disabled, and i don’t like that feeling… I’ve also just been diagnosed with retinopathy in my left eye, and am terrified of becoming blind…with a six month waiting list to be seen at my local eye clinic for evaluation regarding laser surgery, i am getting frantic… More and more things are going wrong, and I need a little encouragement…please…
Hi Anna, sorry you have to be here 
The only thing encouraging I can say is that the closer our bg’s are to normal non diabetic numbers, the better our chances of avoiding complications. Neuropathies can often be reversed or greatly lessened just by gaining control. Retinopathy can be prevented from progressing. Please forgive me if you already have control, I am only speaking from the collective experiences of those I know in the diabetes groups. This group & alt.support.diabetes misc.health.diabetes There is a high volume of problems talked about in all these groups, people share their experiences and what helps them, perhaps you would like to post to all 3 groups for maximum chances of advice. In misc.health.diabetes for instance, there is an endocrinologist and a number of extremely knowledgeable people who have researched diabetes at much higher levels than the average googler. The following link is to the FAQ’s of misc.health.diabetes: — http://www.faqs.org/faqs/diabetes/ This is a cheerful group but you will hear some straight talking too.
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Sorry to hear your news Anna. What are the symptoms of the Charcot syndrome ?
Response:
Sorry to hear your news Anna. What are the symptoms of the Charcot syndrome ?
Hi, and thanks all who wrote—sometimes it helps just to know others are out there who, while they may not "know" you, do actually care. Peter—I can only speak for myself, but it seems a pretty typical presentation that I went through: I started off with a pain in my usually vaguely numb left foot, and was diagnosed with heel spurs. My foot progressed to becoming warm to touch, red, swollen and seemed, over time, to get ‘flatter’ and lose its shape. The swelling went up to about my knee, and I have a photo of my leg that looks like a beached whale next to my right one. No real pain involved, but the numbness grew worse, and it felt like I was wearing a very tight sock (probably because of the swelling, that never went down, even at night…). I was sent from pillar to post of health care—orthopedics, rheumatologists (told I had arthritis AND lupus), and finally to a vascular surgeon for evaluation for amputation. Thank God he referred me to a foot specialist who put me in plaster for 5 months, changing the cast every 3-5 days, saving my leg, even though my foot is grossly deformed. I got married the day after the cast came off, in a double-upright metal brace, clumping down the aisle like the bride of frankenstein—LOL. Apparently the way charcot works is the neuropathy allows micro-damage to the foot bones; you can’t feel the bumps and bangs, so your foot takes a greater beating than it would normally. This sets off an inflammatory response, that, because of the neuro damage, is exaggerated. The inflammatory response actually leads to the destruction of the bones–makes them soft and powdery, and they break. The treatment is non-weightbearing, immobility—in the case of my first foot (in the USA), plaster casts changed frequently to match the reduction of swelling, and for the second foot (in the UK), an air cast (definitely not ideal since it comes off; not good for non-compliant people like myself…sigh…) It seems in the UK they don’t reccomend braces for day to day use, and I have shoes from the surgical appliance department. My days as a foot model and ballerina are over! LOL Am I really the only one on this list with this condition? One for the text books, me….LOL Cheers, Anna
Response:
Thanks for that Anna. You are very brave. I have troublesome feet but nothing like you have lived with.
Response:
Hi all—just found this group tonight, and hoping for a little cheerful group commiserating…are there any others dealing with peripheral neuropathy? I have neuropathy in my hands and feet, with both feet affected by charcot joint syndrome, and am finding myself less and less able to cope, and less and less able to adjust to the idea that I will live the rest of my life like this, with only the possibility/probability that it will worsen. I am a nurse, and having to quit my job in the newborn intensive care unit to do a ‘desk job’ because i can no longer tolerate being on my feet and am not able to hold/grip/open etc with my hands…i’m becoming disabled, and i don’t like that feeling… I’ve also just been diagnosed with retinopathy in my left eye, and am terrified of becoming blind…with a six month waiting list to be seen at my local eye clinic for evaluation regarding laser surgery, i am getting frantic… More and more things are going wrong, and I need a little encouragement…please… thanks in advance, Anna
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