Confused: test didn't detect neuropathy, but many symptoms

Posted by da20pilot @da20pilot, Feb 13, 2020

Hi
Judging from the other posts I am not alone and extremely disappointed with the current health care i am receiving. I was given a chemo pill and got some form of neuropathy. I was a daily drinker at the time as well had a fair amount of anxiety and on and off hypothyroidism. Fell into a depressed state for many years. Was given opioids for the last 12 years to treat what I would call severe pain in my feet legs and hands and life was bearable. I fall down constantly. My doctor took a position in a hospital so I was referred to a pain clinic Now they wont give me the opioids to me because a nerve test couldn't detect neuropathy. The current doctor had me convinced I didn't need them so I started taking less. I can barely walk. The burning has moved to my chest. I haven't slept in days. It feels like I'm standing barefoot on ice. My legs feel like I ran a marathon the day before and the cramping after a short walk is unbearable. I cant believe they expect me to live like this. I at a total loss. Any thoughts would be appreciated.

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@lorirenee1

@da20pilot It is amazing how different doctors can be. My pain doc recommended a medical marijuana card! He gave me all the forms I needed to fill out, where to mail, etc. Personally, I think you should get your card back, if you can. If it helped pain, you need it. Find a doc who will fill out the part that he needs to fill out, and get it again. I know you paid so much money for the first card, but it is money so well spent. I would even talk to a doctor before even seeing him, and ask if he will support your getting a card. God in heaven, you have been through way too much. Your life pulls on my heart strings. I will think about you, and hope that something helps. God bless you. Lori Renee

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Hey everyone - I received my medical marijuana card in hopes that it would take care of my pain and reduce my need for hydrocodone. Unfortunately, it was not as great as I had hoped for. My pain level equated to extra strength THC and as I crept up the dosing chart to find relief, it made me completely unable to function. I don't get that from opiods therefore, opiods win out for me. Now this is not what any Dr or our government wants to hear but too bad, it's a fact for some. My Mom for example...41 year chronic pain suffer from a motorcycle accident and on opiods to live somewhat of a less dysfunctional life. There are legit reasons for people to need certain drugs because other drugs or techniques dont work.Whoever brought up the point earlier about diabetics needing insulin....great point. Sometimes, it is what it is.

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@lorirenee1

@da20pilot It is amazing how different doctors can be. My pain doc recommended a medical marijuana card! He gave me all the forms I needed to fill out, where to mail, etc. Personally, I think you should get your card back, if you can. If it helped pain, you need it. Find a doc who will fill out the part that he needs to fill out, and get it again. I know you paid so much money for the first card, but it is money so well spent. I would even talk to a doctor before even seeing him, and ask if he will support your getting a card. God in heaven, you have been through way too much. Your life pulls on my heart strings. I will think about you, and hope that something helps. God bless you. Lori Renee

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I know. This is crazy. 150 for my card he tells me he'll treat me then the next visit he says he won't. Unbelievable.

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@darlingtondoll

Do you still fly? After I had a couple of strokes, I couldn’t get my pilots license. I was told that I could get a sports license which means that I can’t take anyone up with me. Now that I am paralyzed, I can’t use foot controls so I cannot fly anyway. My husband is a pilot, but he sold his twin engine plane so we are both grounded now.

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I had a motorcycle are used to drive everywhere and I had to sell it because of my problems so I understand you losing the flying it’s hard to lose things we love

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@da20pilot

I know. This is crazy. 150 for my card he tells me he'll treat me then the next visit he says he won't. Unbelievable.

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@da20pilot AllI can say is Grrrr.

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@rwinney

Hey everyone - I received my medical marijuana card in hopes that it would take care of my pain and reduce my need for hydrocodone. Unfortunately, it was not as great as I had hoped for. My pain level equated to extra strength THC and as I crept up the dosing chart to find relief, it made me completely unable to function. I don't get that from opiods therefore, opiods win out for me. Now this is not what any Dr or our government wants to hear but too bad, it's a fact for some. My Mom for example...41 year chronic pain suffer from a motorcycle accident and on opiods to live somewhat of a less dysfunctional life. There are legit reasons for people to need certain drugs because other drugs or techniques dont work.Whoever brought up the point earlier about diabetics needing insulin....great point. Sometimes, it is what it is.

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@rwinney Hi Rachel! Even though the marijuana made it hard for you to function, you might want to try different strains of it. I absolutely know what you are talking about. The amount you need to not feel pain, makes you unable to function. I have that also, but am learning to pick and choose which kind and how much to take of that kind. I choose from chocolate, gummies, the plant itself, and a vape. The edible things give a very strong high, but if I am in excruciating pain, I take them, or Kratom. I am so happy you have a doctor that gives you the hydrocodone you need, especially if you find you really can't do the marijuana. Oddly, I am learning to live feeling a bit high. It beats PAIN!!!! However, down the line, I will probably do the Dorsal Root Ganglion Stimulator trial. I do think it will come to that. Meanwhile, I have not had pain for almost 3 days, which has left me utterly perplexed. Tonite, I can feel mild pain again. What an illness. Just what an illness. Lori Renee

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@lorirenee1

@rwinney Hi Rachel! Even though the marijuana made it hard for you to function, you might want to try different strains of it. I absolutely know what you are talking about. The amount you need to not feel pain, makes you unable to function. I have that also, but am learning to pick and choose which kind and how much to take of that kind. I choose from chocolate, gummies, the plant itself, and a vape. The edible things give a very strong high, but if I am in excruciating pain, I take them, or Kratom. I am so happy you have a doctor that gives you the hydrocodone you need, especially if you find you really can't do the marijuana. Oddly, I am learning to live feeling a bit high. It beats PAIN!!!! However, down the line, I will probably do the Dorsal Root Ganglion Stimulator trial. I do think it will come to that. Meanwhile, I have not had pain for almost 3 days, which has left me utterly perplexed. Tonite, I can feel mild pain again. What an illness. Just what an illness. Lori Renee

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Yayyy! Take the better days for all their worth my dear and keep riding the wave. Best to you.
Rachel

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@birdierobin

Happy Valentine’s Day everybody I hope it’s a very uneventful day for you when it comes to pain stuff may you feel some kind of love today

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Same to you Robin! Thank you.
Rachel

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@darlingtondoll

About falling, I have no sense of balance, but if I look at my feet in the shower, then I have a better chance of knowing where they are. I fall a lot too, but I try to stay in my wheelchair except in the shower. We gutted our bathroom and had a walk in shower put in so that way, I can get my wheelchair up to a large stone bench and that has made it safer for me. I used to have one of those portable plastic benches, but when I would fall, the bench would fall with me and I would be stuck on the floor until my husband could rescue me.

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I know this is really bad I fall in slow motion it’s like I try to catch myself and I don’t so I slowly fall down I’m sure one day I’ll start falling hard and I will need my walker more!

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