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Chronic Pain

I have Schwannomatosis and have tumours on my spinal cord about 30 of them and they give me so much pain I am in quite a deep depression. It took 15 years to get diagnosed and got treated very bad by doctors in the uk. I use a wheelchair because even though I can walk a little bit, I got fed up with people walking into me when I used sticks or the sticks slipping on wet ground which just made the pain worse. I lost my wife and kids because I married a very selfish woman who hated my disability and was ashamed of me. I'm living alone now and feel very lonely and any amount of stress just makes me so ill I feel like ending it all. I could say a lot more but am hurting now so I need to lay down.

Anandadas Anandadas 41-45, M 6 Responses Feb 16, 2010

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I have just been diagnosed with it myself. Had a very large tumor removed from my sciatic nerve a few years ago, and recently one removed from a nerve around my ribs. Now I have one on the main branch nerves above my knee that doctors dont want to go after because they say it could paralyze me.<br />
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Anyway please friend me all of you so we can keep in touch. It does help to talk to one another!

We ought to start a group on facebook but your always welcome to contact me, I don't know how much good I can do but I wouldn't mind meeting others in my situation cause our condition is very rare.

i have schwanomatosis and i cant seem to find any forums or web chat sites in the uk where i can talk to people in my situation? any help please? <br />
thanks<br />
Amy

You know I realised a few years ago about my depression and no matter how much I wanted to avoid it, I had to admit it was born from self pity and realising this helped me a lot because I believe in karma and now see karma as a truely wonderful thing and in a strange way bad karma is the best because when you suffer you always learn something and I have always wanted to be a better person for years now. Being in a wheelchair has made me realise so much, I'm so glad I'm not ignorant any more because there are so many difficulties when your in a chair, things that you just couldn't think of. Plus suffering has made me more compassionate to others and spiritualy it has helped a huge amount and that is a very important part of my life. Anyway saying all this I know that there are times that go so low that it can be like a endless void and the only thing that gives me strength is knowing that it is temporary cause life is just like that up and down like a yo yo! It's hard!

So sorry to hear how your feeling . I also have schwannomatosis and I know how painful it is . It's also nearly impossible to get any doctor who know's anything about it . Do you take much pain meds for the pain ? have you had many operations for the tumors ? I'm after 11 spinal ops but the tumors are still after coming back but i take pain meds that helps a lot . Sorry to hear that your wife could'nt cope with it but if she could'nt take it maybe your better off without her so that you'll meet someone who can be there for you . do you see your kids much ? my daughter keeps me going when times are tough . there's a group of us on facebook who have schwannomatosis and I find it a great help to talk to people in the same position .if you like i can give you more info , just let me know . take care.

All suffering is relevant and when I first got nerve pain it really buggered me up and now if I had the same pain it would be so easy to live with. So my heart goes out to anyone suffering, even emotionally.