Chris: To all who suffer with... - Foggy's "Invisibl...

Foggy's "Invisible Illness" Support

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Chris

Cb1963 profile image
9 Replies

To all who suffer with  neuropathy,don't suffer in silence let's share our moans and groans, and see what works and ones that don't, it's an intense pain and let's see if we can get get some relief, you would of thought in this day and age there'd be a tablet that could significantly reduce the pains that this condition creates,so put your pins and needles down and let's get together 

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Cb1963 profile image
Cb1963
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9 Replies
alycidon profile image
alycidon

I have had to cope with the condition for eighteen years and in my opinion it is so amorphous in nature, that it is difficult to treat.  Sometimes mine requires heat, at other times, cold treatment.  We tend to react differently to the various drugs employed to alleviate the condition, and I can understand why GPs have difficulty arriving at the optimum treatment.

Ultimately, I think that it is down to the sufferer to find what is best for him or her, but this is hardly satisfactory for most of us.  A forum such as this is a very useful tool for pooling our experiences, and I agree that we all need to shout louder - as you suggest.

Cb1963 profile image
Cb1963 in reply to alycidon

Yes it's an intolerable pain,I'm not a whip, but I even wonderd if get my lower legs amputated would solve my issues,but then the phantom pains would probably still there,I would even take part for clinical trials if any new medication's became available, and I still have the physiological side of trying to deal with it,at times the pains drive me insane,the ones in my arms/hands  are bearable with tablets (taking more than the recommended dose ) and I don't want to put other people off,but my symptoms are still as active as the first day I was diagnosed,and unfortunately the start of this condition was a frightening experience,this condition can come in all sorts of guises and if anyone who thinks you have the start of this illness, rest assured your not having a heart attack, or your arms and legs are out of control, I felt like a puppet on some occasions,get to a neurologist and this can take the fear out of any underlying problems,and talk to your loved ones and let them know how you feel,it's a long road and always have faith,and stop drinking alcohol as that's a recipe for even more problems, keep  a healthy lifestyle and talk to your GP.

alycidon profile image
alycidon in reply to Cb1963

This is a silly website.  I've just done a long reply to you and it has disappeared completely. 

Cb1963 profile image
Cb1963 in reply to alycidon

Oh dear that shame,I'm pretty new to technology but so far so good for me,and I hope you have better luck next time

Marz profile image
Marz in reply to alycidon

b12deficiency.info/signs-an...

Read my post below if appropriate ....

Marz profile image
Marz

Do you know your B12 level ?  Needs to be around a 1000 to prevent cognitive decline and if under 500 can become a neurological condition if not correctly treated .....

b12deficiency.info/signs-an...

Scroll down to read the neurological symptoms ....

Watch the videos too - under the heading Films.  Third one down will indicate the importance of GOOD B12 Levels .... Docs simply not aware.  If you are bumping along the bottom of the range then you are supposed to be fine. 

Miep profile image
Miep

I have enough pins and needles to lay out a complicated dress pattern and knit a fairisle sweater, but hey,who cares?

Carrick1234 profile image
Carrick1234

Hi. After a lot of years suffering I was just coming to terms with my Pn and trying to get my life into some sort of order. When last week I had a stroke. Lucky enough it was only ( if I can call it that) a mild one and I was only hospitalised for a matter of days. Now I have more tablets to take and try and start things all over again. Who said Things can only get better. Cheers all.

Welsey profile image
Welsey

Dang !!! I'm so very sorry !

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