beaudrya786

Peripheral neuropathy nightmare

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Wow, it has been too long since I've neen on here. My weight loss dream is currently in nightmare mode. I have been in and out of hospital the whole month of January. I went from 190 to 136 in less than 3 months. I ended up with peripheral neuropathy due to malnutrition. I am currently home with a picc line and TPN ( being fed all my important vitamins and lipids through an IV) and a nurse comes out twice a week. The pain in my legs and toes is horrible and the worst thing is I got to this point by not eating because of nausea and the excitement of seeing the scale drop so rapidly. Now I can barely walk to the bathroom, I haven't worked since jan12th and I have been in tears the last 3 mornings because of pain and lack of sleep, I need help and I'm hoping someone on here can help me with the pain issue, I am currently taking neurontin, Percocet, Tylenol pm, b1, b12, omega3, biotin, multivitamin, I have had no relief from the pain in my toes and I started the neurontin and TPN 9 days ago.

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Oh my gosh.. this sounds horrible. My heart goes out to you. While you weren't eating.. were you at least taking all the required vitamins? and did the doctor know that you weren't eating.. ?

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I never took b1 but I took the rest that were recommended. My surgeon seems annoyed that I'm still complaining of pain, I was discharged home from the hospital last Saturday night with 1 Tylenol with codeine and the neurontin but it hasn't helped and now he has prescribed Percocet and I haven't had any relief from that either

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Oops, yes the staff was aware that I was having difficulty eating, and they said just keep up on your vitamins and protein shakes

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I'm so sorry you're dealing with that.  I know just how excruciating peripheral neuropathy can be, I dealt with that and a dropped food which necessitated me using cane at about 3 months out.

 

Blood work showed some levels were on the lower end of normal and my vitamin D was low so I started a daily B Complex and a dry form D3 (along with my 200% RDA multivitamins) and that resolved the problem but it took a good 12 weeks.

 

If your pain is reasonably localized, it might be worth asking your doc about capsaicin cream.  I found it helpful.  http://www.peripheralneuropathytreatments.com/capsaicin.htm

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Sorry for your trouble.

Have you sought a 2nd surgical opinion?

Is your B12 level okay?

A pain management specialist might be able to help you with pain control.

Best...

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Cinwa, I was hoping you would respond, the pain is in both feet all toes are involved . Even a light breeze when someone passes is excruciating, if the blankets touch them I just want to cry, I will ask the dr about the cream, is there any other oral pain meds you can think of? I just want to cut all my little piggies off at this point. I have had 4 MRI's, a ct scan, a lumber puncture and a nerve test, all were fine. I have little to no lower tendon reflexes, weakness when standing, my toes don't bend down or up. My b-12 level was high and I don't know what the other vitamin levels are. The pain is bad and I had two kids with no pain meds and that was a piece of cake compared to this.

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@ spunkycat, I was also seeing a neurologist when I was in the hospital, I am going to see her again hopefully next week. My surgeon saw me on Monday then told me he would see me in a month. When I asked him about work he said it can take a long time to resolve. I am 3 months post op and he said that's when he usually sees these problems. I feel like he either sees this a lot or he is just as perplexed as me. A month seems like a long time for a follow up.

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I see a pain management doctor for pain control after I was injured at work.

He is excellent and has helped me a lot.

Worth thinking about , IMO.

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Cinwa, I was hoping you would respond, the pain is in both feet all toes are involved . Even a light breeze when someone passes is excruciating, if the blankets touch them I just want to cry, I will ask the dr about the cream, is there any other oral pain meds you can think of? I just want to cut all my little piggies off at this point. I have had 4 MRI's, a ct scan, a lumber puncture and a nerve test, all were fine. I have little to no lower tendon reflexes, weakness when standing, my toes don't bend down or up. My b-12 level was high and I don't know what the other vitamin levels are. The pain is bad and I had two kids with no pain meds and that was a piece of cake compared to this.

 

If the pain is localized then it might be worth talking to your doc about a cream like EMLA - it numbs the skin and lasts for a few hours.  Ask about Lidocaine patches (Lidoderm®).  

 

You can get topical pain relievers (analgesics) like capsaicin (Capzasin-P®, Dolorac®, Zostrix® are brand names). It's made from the seeds of hot chili peppers which may reduce the ability of nerve cells to transmit pain messages to the brain.  It's definitely worth checking in with your pharmacist about that too.  Those people have a wealth of knowledge about OTC products.

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I see a pain management specialist for my shoulder. He told me Neurontin could take up to 3 weeks to fully work. Maybe Lyrica would help?

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Thank you all for your replies, I will definitely look into the topical creams and ask about a referral to a pain specialist. I did read somewhere that it can take a long time for neurontin to work. I feel so pathetic and helpless, and I just want the pain to go away.

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I'm so sorry this happened to you. I'm confused though, as to what the exact cause was? Did you seriously just not eat? Anything?

YOur surgeon didn't require any post-op follow ups where you could have discussed what was happening? Sorry if this sounds obtuse, I am really just interested inlearning about what happened.

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Gaviv- my surgery was in oct, I had a follow up at one week. Then one month, my weight loss was stable, then at Xmas I got the flu, went back to clear liquids, then started feeling numbness and tingling in my legs and feet, I called my surgeon and was told to start b1 and continue with clears, by jan 9th I could barely walk and was admitted to hospital by my primary care physician, no one would listen to me that it was a nutritional deficiency that was causing all my problems, I was followed in the hospital by a neurologist who refused to believe it was due to my surgery and poor nutrition, after I was discharged I made an appt the next day to see my surgeon and I was admitted to the hospital I had my surgery at, he had never been updated on my condition even though I had asked for all results to be sent to him, I was in the hospital for a week, asked to see the dietician twice, the food was horrible and no one seemed to care that I had no appetite. Since I've been home I have been forcing myself to eat each meal because if I don't my condition will never improve and I will be stuck with a picc line forever. I am going to a support meeting on Monday and I'm hoping this will help, I am responsible for getting myself in this condition and I shouldn't have let things get this far. I am a nurse and should know better.

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I truly hope you have a quick and full recovery. Keep us posted.

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I suffer from severe peripheral neuropathy from Diabetes. My neurologist started me on a compound cream with Amitriptyline and Lidocaine also contains a few other things. Seriously, the best relief I have had. I have tried several medications, Neurontin, Lyrica, Cymbalta, Tramadol, Percocet, Capzasin, you name it, I've tried it. The compound cream gives me the best relief. Unfortunately, nerve pain is hard to treat. I have dealt with it for over 20 years now, Good Luck to you. I know how frustrating it can be trialing medications to see what works.

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I am so sorry for your suffering. I don't have anything to add advice-wise that hasn't already been said. I just wanted to chime in a add my support and prayers that they find something to help your pain very quickly. Just keep in mind that if nutritional deficiencies are responsible for your pain then you are doing everything right to correct this and time, patience, and persistence are necessary to see you through this. 

 

Candis

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So far since my last posts I have tried the capsicum? Cream, lidoderm patches and neosporin with pain. Non of these have given me any relief For pain I am currently taking the 1 Percocet q4 and the neurontin that the dr prescribed, plus 2 norco q4-6 hours that my sis gave me. I know it's wrong to take someone else prescription but I'm desperate. I have been trying to make an appt with the neurologist I saw in the hospital, they will be back in town today, I call my surgeon pretty much everyday and am told to give it time.

Edited by beaudrya786

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I will again recommend that you see a pain management specialist. Mine is very helpful.

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I called my bariatric surgeon for a pain specialist consult on Monday, he spoke with pain dr and called me back and recommended the neurologist. The surgeon even gave me his personal cell and pager number if I couldn't get the neuro to see me right away. I wrapped my toes in the lidoderm and no relief

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So saw the neurologist yesterday, I was in full scottish crying mode, so it took a while for her to understand what I was saying. I can usually put on an American accent but I guess the pain and lack of sleep had done me in! So the plan now is to double the neurontin and do more testing

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Neuron tin is good for nerve pain. I hope you get some relief.

Best...

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