Neuropathy

Posted by artemis1886 @artemis1886, Sep 16 5:43pm

I have a simple question! How the heck does neuropathy know when it’s bedtime and it’s time to start hurting? Not during the day just a night. Just to deprive you of sleep. It has been that way for the last week.

Interested in more discussions like this? Go to the Neuropathy Support Group.

And it is well proven. I spent the past 15 years working for a Government Contractor, and I worked closely with NOAA, and they even agreed that the weather, specifically barometric pressure can and DOES effect the human body. Not all the time and not everybody, but it does, as does the lunar cycle. It's not fantasy or science fiction, we're not talking warewolves here. Ask any police officer or hospital employee and they will tell you that during the full moon things amp up. It does effect the human brain, and if it effects the brain, it effects the nerves. Growing up in the 60's and early/mid 70's, we all (at least I did) had relatives grandparents, great aunts/uncles that said it was going to rain or something weather wise was going to happen because their elbow or knee was acting up. The kids just laughed, but they ended up being right, or when it was cold and snowing some of the women were complaining about sharp pains or aching joints. My mom was almost in tears at times, but when the snow was gone, her pain subsided.

REPLY

I used to love going to bed - fell asleep before my head hit the pillow and Mr. Sandman with his "magic beam" always brought me lovely dreams. Like everyone else these days. Mr Sandman has turned evil. He lets me sleep everywhere during the day . I often fall into a deep sleep sitting at the computer but when bedtime comes, he turns off his "magic beam" and everything from my toes which are numb and tingle to my hands and shoulders hurts, making sleeping well as I used to do, well nigh impossible. Plus, as one commentator described it, I drag myself out of bed after a sleepless night, feeling as if I am wearing shoes two sizes too small and too tight knee high boots. I used to be a very fast walker - now I walk like Frankenstein-- but as my wise 90 year old mother often reminded people , 'used to be" died a long time ago.

REPLY
Profile picture for insanepain @insanepain

Yeah, I know. Sleep is at best 4hrs, and that's with a handfull of asssorted pills and supplements. Lyrica 200mg, muscle relaxer X2, Melatonin, Valerian Root, GABA. I can maybe nod off, but it likes to wake you up just to mess with you. For me it likes to amp up after 6pm and gradually increase, and giving me random jolts especially after 8pm. People and Dr's tell me "it's because you've been on your feet all day". To which I reply.. "I can't walk or even STAND on my left foot, and I haven't for a full year". They just look at me. Idiots.. I thought it could be food related and maybe it acts up after eatting dinner or a big meal, but I am not diabetic and eat healthy. Occasionaly it acts up during the day, but it is always worse at night. Since I am not working because of all of this, I try and take naps during the day if I can. Good luck to you, hopefully we can all sleep tonight.

Jump to this post

@insanepain In my experience, doctors are not interested in anything they can't cure and neuropathy is one of those if you aren't bleeding or have a bone sticking out of your leg, they just think you are another neurotic wasting their time. I don't think most medical students even study neuropathy as least my pcp doesn't seem to know as much as folks on this site. I don't drive but wonder if people dealing with the silent but dreadful limitations of neuropathy, can get handicap stickers for parking.

REPLY
Profile picture for revdorth @revdorth

@insanepain In my experience, doctors are not interested in anything they can't cure and neuropathy is one of those if you aren't bleeding or have a bone sticking out of your leg, they just think you are another neurotic wasting their time. I don't think most medical students even study neuropathy as least my pcp doesn't seem to know as much as folks on this site. I don't drive but wonder if people dealing with the silent but dreadful limitations of neuropathy, can get handicap stickers for parking.

Jump to this post

@revdorth Agreed. My pain management doctor is starting to blow me off, as is my PCP and my neurologist. Guess they think it's 'not that bad' or I just want meds, which I don't, I hate taking pills unless it's natural/herbal. I have to jump through hoops to get my disabled plackard and it's only temporary and I wanted a permanant one. I don't drive anymore, my wife (bless her) takes me to appointments. Then I have to jump around on one using my leg my walker or take the knee wheeler. Of course all my doctors are all the way in the back or up 4 floors in their facility. Luckily I only weigh 135lbs, so I can manage at least, but still in pain. I'll be having a normal conversation with them, while I'm in pain, but I am so used to it and I'm trying not to wince or cry, and suck it up and not act like a baby. Guess I just need to start being a jerk about it.

REPLY
Profile picture for revdorth @revdorth

@insanepain In my experience, doctors are not interested in anything they can't cure and neuropathy is one of those if you aren't bleeding or have a bone sticking out of your leg, they just think you are another neurotic wasting their time. I don't think most medical students even study neuropathy as least my pcp doesn't seem to know as much as folks on this site. I don't drive but wonder if people dealing with the silent but dreadful limitations of neuropathy, can get handicap stickers for parking.

Jump to this post

@revdorth A neuromuscular neurologist studies neuropathy not a PCP they study family medicine.

REPLY
Profile picture for insanepain @insanepain

@revdorth Agreed. My pain management doctor is starting to blow me off, as is my PCP and my neurologist. Guess they think it's 'not that bad' or I just want meds, which I don't, I hate taking pills unless it's natural/herbal. I have to jump through hoops to get my disabled plackard and it's only temporary and I wanted a permanant one. I don't drive anymore, my wife (bless her) takes me to appointments. Then I have to jump around on one using my leg my walker or take the knee wheeler. Of course all my doctors are all the way in the back or up 4 floors in their facility. Luckily I only weigh 135lbs, so I can manage at least, but still in pain. I'll be having a normal conversation with them, while I'm in pain, but I am so used to it and I'm trying not to wince or cry, and suck it up and not act like a baby. Guess I just need to start being a jerk about it.

Jump to this post

@insanepain - get your neuromuscular neurologist fill out the forms for palliative care for pain management doctor. All palatine care means is you need certain medications for an incurable disease. That’s what my neurologist does every year for my pain management.

REPLY
Profile picture for artemis1886 @artemis1886

@revdorth A neuromuscular neurologist studies neuropathy not a PCP they study family medicine.

Jump to this post

@artemis1886 yes-i know - BUT - United Health makes us go to a pcp so she/he can refer us to the proper doctor. I don't have a co=pay for a pcp which is a good thing since when I do see her, she sits across the room from me at her computer and has never in the 9 months has touched me . I don't expect her to know what a neurologist knows - but it would be nice if when I mentioned I have self diagnosed myself (a long wait to see a neurologoist) with neuropothy, she had some helpful advice re meds, etc. It is unlikely that I am her only patient afflicted .There is a six monh wait to see a neurologist and many are not taking new patients so often have to depend on their pcp's for advice. She did refer me to a Physical Therapist so I suppose that is something. My ex=husband was a doctor and told me of the rotations they had in med school = 6 weeks in GYN, etc . He graduated in 1969 so perhaps neuopathy wasn't around than but it is now and maybe only those students who are going to be neurologists are interested in learning more. I don't change my pcp doc. by the way, since the best one. who is a family doc and was part of the practice. is now a concierge doc charging a high yearly fee to see him. This is the coming thing.

REPLY
Profile picture for revdorth @revdorth

I used to love going to bed - fell asleep before my head hit the pillow and Mr. Sandman with his "magic beam" always brought me lovely dreams. Like everyone else these days. Mr Sandman has turned evil. He lets me sleep everywhere during the day . I often fall into a deep sleep sitting at the computer but when bedtime comes, he turns off his "magic beam" and everything from my toes which are numb and tingle to my hands and shoulders hurts, making sleeping well as I used to do, well nigh impossible. Plus, as one commentator described it, I drag myself out of bed after a sleepless night, feeling as if I am wearing shoes two sizes too small and too tight knee high boots. I used to be a very fast walker - now I walk like Frankenstein-- but as my wise 90 year old mother often reminded people , 'used to be" died a long time ago.

Jump to this post

@revdorth OMG ! This sounds like my post! I thought my memory must be playing tricks on me because I don’t remember posting this! To put it in a nutshell this exactly how I feel☺️

REPLY
Profile picture for revdorth @revdorth

@insanepain In my experience, doctors are not interested in anything they can't cure and neuropathy is one of those if you aren't bleeding or have a bone sticking out of your leg, they just think you are another neurotic wasting their time. I don't think most medical students even study neuropathy as least my pcp doesn't seem to know as much as folks on this site. I don't drive but wonder if people dealing with the silent but dreadful limitations of neuropathy, can get handicap stickers for parking.

Jump to this post

@revdorth I got one thanks to my PCP .

REPLY
Profile picture for artemis1886 @artemis1886

@insanepain - get your neuromuscular neurologist fill out the forms for palliative care for pain management doctor. All palatine care means is you need certain medications for an incurable disease. That’s what my neurologist does every year for my pain management.

Jump to this post

@artemis1886 Thanks!

REPLY
Please sign in or register to post a reply.