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Heather716 09-17-2012 11:09 AM

Peripheral Neuropathy
 
This is my first time here. My story is long so I will try to keep it simple. I have hypothyroidism, high blood pressure, poor good cholesterol, inherited peripheral neuropathy, and Diabetis managed by diet I am at the point of a hip replacement. I am slim and reasonably fit and only 55. All of this is apparently genetic and came out of nowhere. I don't have much of a family history. My big issue is the neuropathy. I went from years of numb face, hands and feet to all over excruciating body pains within a few short months, recently. Severe jolts and days where I can hardly walk. The more I move the more I hurt. I am not out of shape but it's at the point that any activity or gardening or housework leaves me in terrible pain. I don't have MS and have had a muscle biopsy that showed clear. I take Gabapentin & Cymbalta which without I feel I'd be bed ridden. Does anyone experience this type of Neuropaghy? Is there any management I should know about? I want my life back :o( Thanks HB

Miched 09-17-2012 11:25 AM

Re: Peripheral Neuropathy
 
Uggghhhh!!! I know how you feel, I was diagnosed with Peripheral Neuropathy about 3 months ago.... I feel your pain, I've had it for 3 years... Sometimes I feel like I am going crazy going to lose it.... can't handle it anymore.... and go to the hospital where they will do nothing.... I am on Morphine and Percocerts and have started Gabapantin 3 weeks ago I was on 900 mg but that wasn't high enough now I'm on 1200mg three times a day.. but still need percs at night..... I don't know this is an awful thing, it has taken over my life.... I find if I lay in bed and use a heating pad when the pain starts to get worse and take 2 percs I can stay on top of it.... Also no blankets on my legs, hurts too much, and my room has to stay cool. I also have been on Cymbalta and Lyrica and those did not work. I am heading to see a Neurologist now. One step at a time, do alot of stretching, get one of those balls and stretch, I find that also helps.

Take Care

Heather716 09-18-2012 11:21 AM

Re: Peripheral Neuropathy
 
Thanks Miched for your reply, Can you tell me more about the nature of your pain? Originally I had numb hands and feet which eventually move up to my knees and elbows. Now I have terrible all over pain like a flu. Muscle and joint pain and severe jolts of pain randomly all over. Problems like my hip feel magnified by the Neuropathy. My meds help my pain and sensitivity some. Last summer I coulded walk bare footed on a floor and was jumpy and hypersencitive. Mornings are tough an evenings I'm on the couch. Mid day I feel pretty good but I am medicated. Nights I barely sleep because of the pain and I moan in my sleep if I do. Wow! This is not how life should be. Is this how life is for you?

mosesthecat 09-18-2012 11:28 AM

Re: Peripheral Neuropathy
 
Hi Heather. I am new to this site and am finding it very difficult to find a post where people are talking about my problems. Perhaps we could chat. I was just diagnosed with Neuropathy and I have drop foot. My doctor has me on Lyrica and Nucynta. It does not help much. He wants to put a Spinal Cord Stimulator in my back next month. Have you heard about this therapy?

Miched 09-18-2012 12:04 PM

Re: Peripheral Neuropathy
 
[QUOTE=Heather Belle;5057987]Thanks Miched for your reply, Can you tell me more about the nature of your pain? Originally I had numb hands and feet which eventually move up to my knees and elbows. Now I have terrible all over pain like a flu. Muscle and joint pain and severe jolts of pain randomly all over. Problems like my hip feel magnified by the Neuropathy. My meds help my pain and sensitivity some. Last summer I coulded walk bare footed on a floor and was jumpy and hypersencitive. Mornings are tough an evenings I'm on the couch. Mid day I feel pretty good but I am medicated. Nights I barely sleep because of the pain and I moan in my sleep if I do. Wow! This is not how life should be. Is this how life is for you?
PS Do you know how to change the title to a more general subject. I wasn't supposed to call it specifically Peripheral Neuropathy?
Thanks HB[/QUOTE]
Hi Heather.... how was your night.... I am out of pain meds... I need to get to the docs and pharmacy... tonight will be hell, and i won't sleep... It's pretty bad when you have to medicate yourself to the point of passing out!!!! I hate it... my relief has been a heating pad. I am waiting to see a Neuro, the doc found 2 lesions on my brain, he thinks I have MS at first I was diagnosed with Fibro, now Pheripheal.... please someone make up their minds.... The nature of my pain you ask.... my legs burn, like they are on fire, and it feels like a thousand needles *****ing me the palms of my hands burn and the bottom of my feet burn, I also have it on my face at times...... How do I deal with it..... I don't, I can't, I think about it all the time, I try to medicate myself until i can finally sleep, my most restful time is early morning, that is when the pain is gone.... but then I have to get up for work. I am exhausted, are you???? How do you deal with your pain... What do you do???? I tried every type of meds I can think of.... and I am obsessed now with looking up symptoms on the internet... pretty bad when you have to try a diagnos yourself.

Have a great afternoon
MD

Heather716 09-18-2012 02:10 PM

Re: Peripheral Neuropathy
 
Hi Moses TC,
I have never heard of a Spinal Cord Stimulator so I googled it. I guess my first question is, is your doctor a neurologist or a GP? Seems severe to me. I try to be super informed and research a lot. I also try to find the most natural ways first. Having said that I went from no ness for Neuropathy to two overnight. So back to the Neurologist to be sure that is the right path. I take Gabapentin & Cymbalta. Although they say I am too controlled a diabetic to have this, my pain is definitely worse as a result of carbs & sugar. So I continue to eliminate those. They B12 is for nerve health so I am going on that. I am still struggling with excepting this is for life and then I need to educate my family & friends. People still have high expectations of me that I set when I was well. However I am determined to get better control of this nightmare moving forward. I don't know anyone else with this so it's rather depressing. I guess it's a process but yes I'dlove to chat with you. What do you do fir drop foot and is that a symptom of Neuropathy. Were you diagnosed with Peripheral Neuropathy? Heather

Heather716 09-18-2012 02:45 PM

Re: Peripheral Neuropathy
 
Hi MD, No I don't sleep and haven't forever. My hip is ready for replacement so that doesn't help. Fortunately I don't go out to work anymore so I can rest. I'm learning to do things in shorter periods and then resting. I used to work in an office and finally had to quit. I am lucky to have a very loving and supportive hubby. I think MS is hard to diagnose and I have had MRI s that say I don 't have it but I still worry all these unanswered questions mean I will someday. I see a Neurologist this week and I plan to ask more questions since the Peripheral Neuropathy has gotten so much worse in such a short time. I feel really upset that my life is all about my health. The first 50 years of my life were all about emotional pain and now it seems to be about physical. I do admit feeling a little sorry for myself at times but I keep plugging away. I too do a lot of research I just try to keep informed. My doctor works with me and is ok with me being knowledgeable. It is my body after all. Just feels like someone put a hex on me lately. It's nice to chat with people that understand. Everyone just smiles and says well you look great. Don't we wear masks and who ever sees us when we can't get off the couch. Anyways is the MS diagnosis from a Neurologist or GP and what tests did you have? Take care. Heather

cocoa100 09-20-2012 07:44 AM

Re: Peripheral Neuropathy
 
are any of you in pain management?

Miched 09-20-2012 12:32 PM

Re: Peripheral Neuropathy
 
The Town I live in does not have a pain management clinic... Nice ey!!! but thanks for asking....

Miched 09-20-2012 12:38 PM

Re: Peripheral Neuropathy
 
Hi Heather.... so far my diagnosis is from my GP he is sending me to a neurologist, just waiting and waiting LOL UGGHHHH anyway the test so far are MRI of brain-2 lesions, Cat Scan, X-rays, blood work, MRI of spine, also an EMG, which showed no reflexes in left foot, he neurologist who did the EMG diagnosed me with Peripheral and the neurologist who did the Nerve Conductivity test diagnosed me with Fibromyalgia..... LOL Did you have your apt with the neurologist this week?? What did he say?? Hope all went well. Are you on anything for pain, what works and what doesnt?? Seems like everything I try does not work. Like the other message said pain management clinic.. but we do not have a pain clinic hear.. so I am SOL...

Take care Heather
Michelle


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