Neuropathy & Exercise

BTW, Sleep and how if affects pain levels is a great topic for a new discussion. @pfbacon, would you like to start a new discussion dedicated to that topic in the Neuropathy group?

@johnbishop What a refreshing song to listen to these days . Yes let the sunshine in but its gloomy here Rain coming in but your song brightened up my spirit Yea

@lorirenee1 Never a dull moment in our bodies. The sensations you experience in your feet must be awful.

Outside of steady pain, some of my sensations flare, come and go on different levels and different body parts. Everyday can be unique. Recently I was low on R Alpha Lipoic Acid so I rationed until my next order arrived by reducing my daily intake. I believe sensations flared as a result. It was comforting to feel something actually making positive contributions to my body. What supplements do you take and do you think they help?

Yes, I surprised myself last fall by opening the door to medical marijuana. Desperate times call for desperate measures. It's been a love/hate relationship and one of much experimenting. As of late, due to mismanaged pain, my PCP has allotted 5 hydro per day instead of 4, my neuro upped Lyrica dose and I have needed to rotate THC pills throughout the day to control pain. I find that opiod relief and marijuana relief are different. I benefit differently from each.

I used to hope that with pain relief came the ability to physically accomplish things. I'm a go getter by nature and have always lived by the activity with accomplishment rule. Never could sit still... love to achieve. However, now I have no choice but to accept my new life and find comfort in feeling pain relief without physical accomplishment. Acceptance is and always will be my daily battle.

As soon as the world settles, I hope you get back on track for your dorsal root trial. Think positive.

Rachel

Hah - good story John.

@rwinney Hi Rachel, Living with steady pain is no joke. I remember reading that you have central pain sensitization. Did I call that quite right? I do know it has to do with your brain amping up pain signals for no reason. There is where the theories of telling yourself that there is no reason for pain, that you are ok, etc., come into play. However, I really believe that with nerve damage illness, those kinds of things just do not work that well. I have done endless tapping, talking to myself like a nutcase that I do not need the pain, and that my brain needs to calm, but those things seem to work for only short periods of time. So I am happy to have my Kratom and medical marijuana so that I don't contemplate ending it all. Like you, I experiment with marijuana a lot. I want to take just enough to take away pain, but not feel high. I have not found that sweet spot. I wind up high, not intensely high, but pain is distanced. I can cope. I can watch tv, read, act like a person. I smoked marijuana in college, and had fun with it. I can't see the fun anymore. Maybe it is because I am a senior lady with different values. Maybe having to use it for pain takes the joy out of it. Like you, the biggest challenge is learning to live like this. It is intensely hard for me. I do not know if I will ever accept this life. I was a very hard worker and high achiever. Hard to give it all up. Meanwhile, I keep plugging along, waiting for my Dorsal Root trial. You have an intelligent, clear thinking mind, and I know how you struggle. And you are young still. So hard. Maybe our metamorphosis takes a very long time. If I could just accept this, it would help tremendously!!! Stay safe, Rachel. You are darling! Lori

@rwinney Love this, Rachel! A very cute tattoo!!! Lori Renee

@darlingtondoll sorry to hear all your struggles. It sounds awful to deal with. I do not have any swelling so far. Does ted hose or copper support hose help you at all?

@lorirenee1

I'm on hold for a drg stimulator, too. A couple of other issues have come to a screeching halt, as well. It's so frustrating to have important medical treatments suddenly brushed aside. I'm having trouble with binocular diplopia, the pain that needs to be addressed, and a procedure by the urologist. I'm being told that I can't see these doctors until the end of June. If the process of getting a drg implant is like the scs implant, I won't be getting it done until the end of the year.

I turned off my scs ten days ago, to assess its usefulness. So far the pain is pretty much the same as it was with the scs turned on. I don't know how long it takes until the pain gets as bad as it was pre-scs. I hope it won't be very long until I can see if it's still doing what it's supposed to or not.

Right now my pain level is pretty high because I took advantage of the beautiful weather and washed one of our cars. I'm hoping that tomorrow will be as nice as it is today, so I can wash the other car. Chores like that fall under the heading of exercise. But, on days like this, when I'm on my feet, I have to take an extra morphine. Usually I only take it in the morning and at bedtime, but my prescription is for 3 a day, so it's there if I need it. My pain specialist is in favor of medical marijuana, but the group he's with made the decision not to prescribe it. My PCP told me that if I were to use marijuana products he would stop giving me the morphine. I don't know if he'd make me stop Clonazepam too.

I'm glad right now that I get all of my prescriptions from Humana Pharmacy mail order, so I don't have to go to a pharmacy where sick people are likely going to be. We had to drive to town this afternoon to get some groceries, and drove through Taco Bell. So far, we've found that the restaurants we frequent are doing drive through or curbside pickup or delivery. Some of them will let people go inside to order, but it has to be to go. My wife enjoys cooking, and pays close attention to having a balanced diet. Under normal circumstances we eat out more than I'd like, so I'm liking the stay at home thing. She does the cooking and I do the cleanup.

I'm a chocaholic, too. But I need to shed some pounds that I gained over the winter, so I only eat one bite size candy a day. My wife gives me chocolate covered cherries for Christmas every year, and I count them as part of my daily ration. It takes a lot of self control not to raid the candy dish or cookie jar any time I walk through the kitchen.

Do you know how soon you'll do the drg trial? If it works, it's a great invention. I've heard both pros and cons, but if it works, it's worth giving it a try. I'm not afraid to try anything by this point. It sounds like you're already approved for it, and now, because it's not considered essential, it's been put on hold. I'll be waiting to hear how it goes with you.

Jim

I have support stockings I lie down on my side every afternoon and elevate my legs. I have had pulmonary emboli three times so I have to be careful with my swollen legs

When you are paralyzed it is like being on a very long plane ride only you never get off. Blood clots form in your legs and travel to your lungs