Peripheral Neuropathy Neuropathic Pain

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By StevieDow

A personal story

This article is about one persons battle with peripheral neuropathy. My wife. She is a cancer survivor who is dealing now with the after effects of the chemotherapy. The chemotherapy saved her life, but it left her with one of its calling cards.

Peripheral nervous system damage

Peripheral neuropathy is described as damage or decreased function of the peripheral nervous system. The central nervous system connects your spinal cord and brain. The peripheral nervous system is the nerves that connect to the spinal cord and your peripheries such as feet and hands. Neuropathy can be caused by disease or trauma to the nerves.The most common cause is diabetes. Other causes include alcoholism, AIDS, nutritional deficiencies, repetitive stress to the nerves, infections, autoimmune disorders, toxins. The list goes on.

Peripheral Neuropathy can affect both the motor nerves and the sensory nerves. The motor nerves control muscle movement. The sensory nerves relate information about touch, feel, pain. In my wife's case it appears to be only in the sensory nerves. 

In the case of my wife, it was caused by 12 sessions of chemotherapy. We knew early on it might be a problem because after each session of chemo therapy she would feel a tingling in her fingers and she became very sensitive to temperature. Touching anything cold would bring on the tingling sensation. She was instructed by her doctor to not to touch anything cold. So for several days after each session of chemotherapy, she would avoid opening the fridge or cold drafts. A cold glass of water was even a no no.

 The doctor had concerns about this because of the drugs used in her chemo sessions. (Flourouracil, Oxaliplatin, Leucovorin). After so many cancer patients they get a pretty good idea of possible after affects of the chemotherapy.




Symptoms and treatment

The predominate symptoms are pain, tingling, a burning sensation and or loss of feeling. My wife complains mostly about the pain and tingling. Just touching her feet sometimes will bring a reaction. Her feet become very sensitive, sometimes as in ticklish and sometimes just painful to touch. She has been cancer free for over a year and now gets regular checkups every three months. She beat one of the most difficult cancers (cancer of the appendix) but she was left with the neuropathy in her feet.

 On a typical day she wakes up and feels nothing. As soon as she gets on her feet she feels mild irritation and tingling. She has a job where she is on her feet all day and after 2-3 hours it can become unbearable. Sometimes it would hurt so bad she was in tears. My wife is real tough. She has a higher tolerance for pain than most but she had to get some help from medication. They prescribed Gabapentin, it was developed for the treatment of epilepsy but is also effective for treating neuropathy. She started at 100mg twice a day and has upped the dose a couple times to now 300mg twice a day. It helps. Her neuropathy appears to be getting worse as time goes on. She has recently started also taking Hydromorphone. Another pain medication. She would wait until the pain was too much and than take one. That was not working so well and the doctors told her to take it before the pain started and more often. 

 Obviously being on her feet all day aggravates the neuropathy and makes the pain worse. On her days off where she just relaxes in her slippers the pain is still there but only at an annoyance level and not excruciating. if she runs out shopping or anything else on her feet it flares up. She says it sometimes feel like walking on sand. Just bending her feet becomes painful.




Where do we go from here?

One of the things that usually accompanies constant pain is depression. In talking with her about it for the purposes of writing this she has told me that some days it is so bad that she thinks it may have been better had she not survived the cancer. This is the part that worries me the most. I will be taking a much more active role in her therapy now that I understand just how severe the pain has become. She is so "tough" that she keeps a lot inside until someone really pry's it out of her. So our plan is to first change doctors. She still needs to see the cancer specialist for regular tests but she needs to see a doctor that might be better at helping a patient with managing pain.

My first choice is our regular family doctor. Cancer is a specialty, peripheral neuropathy and pain issues are not so tied with cancer as they are with a host of other conditions.. Seeing another doctor can't hurt. We need to get her off her feet all the time. That won't be possible in her present job but she can retire early in two years. The other option is to apply for disability. From what little I know, it could take that long for the claim to be approved anyway. Another option is medical marijuana. We have a friend who uses it for pain cause by MS. (multiple sclerosis). The problem with medical marijuana is a lot of companies don't buy into it. She is subject to testing at work and it appears to be a gray area weather companies can fire someone for marijuana even if they have a prescription. We need to work on our laws a bit. Some anti depressants are also effective with managing pain so it is worth a try.

She can retire early at age 55 in a couple years. Hopefully she can go that long. If not we will have to make some other arrangements or sacrifices. Another of life's challenges.

Comments

Marisa Wright profile image

Marisa Wright Level 5 Commenter 2 years ago

I feel for your wife. I have a prolapsed disc in my neck, and when it first "went", it was pressing against a nerve. I know how excruciating the pain from that one pressure point felt, so I can't imagine how anyone copes with more.

The one thing that helped me was reflexology - I wrote a Hub on my experience. The other outlandish thing, which helped a friend of mine who had problems after chemotherapy, is a magnetic underlay for the bed. There is some scientific evidence to suggest the magnets block the pain pathways - so the problem isn't cured, but the patient can't feel the pain. Might be worth a try.

StevieDow profile image

StevieDow Hub Author 2 years ago

She is taking meds daily. Disability will be tough as she is still working. Hopefully she can last a few more years till retirement.

BEAUTYBABE profile image

BEAUTYBABE Level 3 Commenter 23 months ago

Dear Stevie,

I can totally empathise with your wife.

I have a disease called "Multiple Systems Atrophy" MSA for short. It is an incurable neurodegenerative disease which affects all the systems of the body. Until recently, I thought I had known all about it, but I was wrong. I receive pain medication which is very strong for severe degenerative disc disease in my neck, back, shoulders,(I have been told that my neck and shoulders are similar to that of a person of the age of 80+) I am only 53.

I have recently had more pain in my arms and legs which I am told is associated with this disease also. A lot of this pain like your wife, is neuropathic pain. About a couple of weeks ago, I had to have a catheter placed, because I couldn't pass urine, this then led to severe abdominal pain, accompanied by severe pain in my vagina, bladder wall, causing severe spasm. I would normally not mention this part of the body, but there may be other woman out there who have this symptom, who are, as I was afraid out of embarrassment to mention it to their doctors even. It took me a while.

My neurologist said that this pain was also neuropathic and increased my Gapapentin dose to 1200mgs three times per day.

I did not realise just how severe neuropathic pain can be till I got it in those lower areas. I have also been on antidepressants for some time because it has just got too much for me to live with. Sometimes, I wake up with intense burning in the heels of my feet that I could just scream out in pain. I know how your wife must feel with this pain. It can be quite in tolerable at times

I would be happy to discuss this more privately if you would like to contact me on the private e mail address. I would be more than happy to discuss this with you. I know how bad this pain can get and I will keep your wife in my thoughts and prayers. I look forward to hearing from you Stevie Beautybabe (Pam)

john liddil 22 months ago

I have the same situation. I am doing Rolfing and also take the gabapentin. I have been associated with spritual practices and am bringing those concepts into my life as many times a day as I can. I sit at a computer and am bringing a tennis ball to work and massaging my feet with it during the day. I have tried many different shoes, crocs, merril's etc. I found that really thick all cotton work socks help. I bought them at Wal-Mart but have not seen them recently. My wife does healing touch and I am taking herbal teas to calm the nerves. I try to remain as physically active as possible and the concept of this happening to me is causing me to reach out to others, be more sympathetic, and research and try everything possible so that this condition can be treated and gotten under control. We are not powerless so we can use our power to overcome whatever is our challenge.

What is Neuropathy 21 months ago

This was really interesting regarding neuropathy. I have been suffering from this condition for a very long time. I really appreciate you trying to give us some help.

Thanks

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