"I Hate Neuropathy"

You're not alone!

Diabetics, cancer recovery patients, HIV+ patients and many others who find themselves confronted with one or more of the many forms of neuropathy are represented in the following quotes.
Yes it's a series of negative comments and is politically incorrect in terms of 'thinking positively' but sometimes even Monty Python's 'Always Look on the Bright Side of Life' becomes tedious and you just need to be able to vent!

With grateful thanks for the cartoon to...mymedicatedlife.blogspot.com

"Dreaming of the day when there's no pain from neuropathy. When nerves can be regenerated, and muscles won't waste away... when people won't suffer needlessly, when doctors will have more to say than, "live with it, deal with it, cope with it, because there isn't a cure."
Dreaming of the day when a cure will be in sight..."

http://www.mdjunction.com/diary/nervylisas-notes/neuropathy-progress

"My reason for writing is because of increasing problems with neuropathy in my feet and legs. I am working with my physician and started taking Gabapentin last fall. Initially it helped, though I found myself feeling tired and, well, for lack of a better word for it, stoned. But my feet are bothering me more and more, last night was one of those nights with stabbing pains in my toes, numbness on the bottom of my feet and a this feeling my feet are cooking from the inside out.
I called in sick to work today, I am exhausted from the symptoms and didn't sleep much at all, now my symptoms haven't changed much from last night.
So, just as I did back in the 80's when I first tested positive for HIV I am turning to the experts..."

http://forums.poz.com/index.php?action=printpage;topic=36704.0

"Nerve pain can be a bummer, it creeps up sometimes when you least expect it - how can you sit in the cinema or theatre and enjoy a performance and at the same time stifle the scream when a red hot poker is stuck in your lower limbs?"

http://www.nat.org.uk/media/Files/Policy/2011/September-2011-Report_Fluctuating_symptoms_of_HIV.pdf

"Neuropathy was one of the first symptoms that I had HIV. Went to the doc about loosing feeling in my feet. Months went by, the feeling turned to fire, and the doc just scribed more vicodin. Eventually he put two and two together and I was diagnosed HIV (6/97) after losing 45 lbs. TC 11, Vl >1,000,000. After two years on vicodin, was weened off and put on Neurotin (hate the stuff...lost three years in a fog). Normal dosage 300 mg/daily; was up to 3000 mg/daily. Am currently on Ultram 8 X 50mg daily..."

http://forums.poz.com/index.php?topic=8243.0;wap2


"My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please."

http://cancercaughtme.blogspot.com/2011/03/neuropathy-makes-you-feel-crazy.html

"I'm interested in hearing from those with long term this isn't going to get better neuropathy. Too often when I bring this up I'm told...It will get better...it is temporary...mine got better....take glutamine it works.....have you tried gabapentin....lyrica.... I know there are many here going through worse, including a dear family member right now, however, some days I just can't take it. I'm tired of discarding the ear rings I want to wear every morning because my fingers don't work well enough to put them in. I'm tired of dropping things all the time in the kitchen. I'm tired of how different my career is now due to persistent lymphedema and neuropathy. I'm tired of hurting every morning and hurting worse every night. I'm tired of not being able to go on long walks with DH in nice weather because my feet hurt too much. Please don't tell me it will get better. I've accepted it won't, please don't deny my reality. I just wanted a place to vent with others who know what this is like.

Oh yes, add in, I'm tired of sleeping with my feet wrapped up in a heating pad because the cold triggers the pain. (Which of course makes the hot flashes worse)..."

http://community.breastcancer.org/forum/69/topic/763459?page=2

"God willing someone will be able to help me. Homeopaths in my city charge 300$/visit. I am a student, 26 year old male and have been suffering from peripheral neuropathy for 1.5 years.
All my blood work is normal, MRI, etc.. I have been to all DR's and neurologists.
Their conclusion, IDOPATHIC Neuropathy.... I hate those words. :(
I am very stressed out about this, its all i think aobut, I dont go a second without stressing about it.

This all started during last summer, I started getting tingling in my pinky finger and ulnar pathway . 1 month later it started on the other hands same location tingling.
2 months later both hands started to tingle all the fingers. I thought i had carpal tunnel, however, 1 month later both my feet started HEAVY tingling.
Now, my face (lips, nose, eye tic) tingle, my feet, and hands.
If I take 10 steps my feet are like a shockwave of tingling deep and constant.
Im very scared and anxiety about the situation is getting worse daily as my symptoms get worse.

My dr's say its a hyper sensitivity that begins when early nerve damage is present. They said there is nothing they can do .
I currently take B1, B12, Vit D.
I have tried hypericum, Rhus Tox, and Kali Phos. all at 30c potencies,

None of them did anything."

http://abchomeopathy.com/forum2.php/237819/

"I am a 41 year old male and two years ago I made an appointment to see my Doctor due to intense pain in my legs. I was diagnosed with Diabetes and Peripheral Neuropathy. All the Dr. did and has still to this day was push pills. I hate taking pills and would rather find a natural way to alleviate the pain. I have tried several different diets and exercise. I am exercising now but that seems to make it worse. Any thoughts would be greatly appreciated."

http://www.zocdoc.com/answers/6029/i-have-a-peripheral-neuropathy-whats-the-best-way-to-get-rid-of-pain

"I hate this Neuropathy. It runs your life. I'm on Gabapentin for it, and it has me falling asleep at the drop of a hat. At all times of the day and night, I'm falling asleep. And I hate that. The pain and the feeling that cigarettes are being put out on you gets old. My doctor said that my neuropathy, that I have from my head to my toes, is from Fibromyalgia. Hugs to everyone."

http://www.facebook.com/event.php?eid=196325833715499

"I’ve had neuropathy for five years now and after years of being prescribed Norco, which was ineffective, I was switched to morphine ten months ago. I hate the stuff as it turns me into a zombie and has ruined my quality of life. Two weeks ago my doctor had me give a urine sample and today called to inform me that trace amounts of marijuana was found in the sample. He asked if I was using the substance. I told him I would be if I could afford it as it helped the pain a great deal. Now he’s sending me to a substance abuse counselor. He’s more worried about the DEA than he is about reducing my pain..."

http://blog.norml.org/2008/08/06/medicinal-marijuana-eases-neuropathic-pain-in-hiv/

"Can I just put it out there that peripheral neuropathy SUCKS, BLOW AND BITES!!!!!"

http://amplicate.com/hate/neuropathy