Unbearable Neuropathy

Hi unbearable pain I am so sorry that you are experiencing so much pain and I too have pain definitely not to that extent but I experience pain. I don’t know if you are a Christian or not and it or my business but when I was diagnosed with progressive peripheral neuropathy I didn’t know anywhere else to turn so I began to trust God more than I ever had because my legs from the waist down I had pretty much lost feeling in it. I am still numb 24/7 but I stay prayerful and I trust God for it . There are good days and bad days but each day gets a little better since I stay prayerful and I trust God for my healing. I hope I have been of some assistance to you and relieves you if you’re pain.

Hi, Louise

"Herd" of doctors is right! That's how I felt; I'd look at my month's calendar and think, "How did I ever manage to accumulate so many doctors?" Most every appointment was a "follow-up," and I'd long since learned what most follow-ups mean: you meet with the doctor, you tell him about any changes since the previous follow-up, and then the doctor says, "Sounds good, Ray. Let's do another follow-up in six months." It can be quite dizzying. Discouraging, too.

Did I mention my three-ring binder in my earlier post – the binder in which I'm collecting the best information I can find on the very few genuinely authoritative websites about my condition? I was explaining to my partner only last evening that I'm doing this not to "out-talk" my doctors (I'd never want to do that) but only so that I can be a fully-educated layperson about my condition and then, when I sit with my doctors, ask good and meaningful (helpful, too, to the doctor) questions.

Your saying how you miss the "freedom of motion" on your stationary bike put a smile on my face – a smile of shared sadness because I knew exactly what you meant. I used to be a big-time distance runner; when I had a knee replacement and had to give up running, I took up cycling as a replacement – outdoor cycling ("real" cycling! LOL) – but caught myself complaining to friends how cycling wasn't the same as running. Why? Because I missed the "freedom of motion." Now that I can no longer ride my bicycle outdoors but instead have to content myself with my stationary bike, I'm again telling friends I miss the "freedom of motion" I used to enjoy cycling outdoors. It's easy to think: Our lives keep getting narrower and narrower. LOL

My very best to you, Louise.
Cheers!
Ray

Hi there. I'm sorry to hear that you are going through so much pain. Have hope that a solution is coming your way because it will. Try sound therapy. Go on You Tube and type in Miracle Nerve Regeneration #GV065 by Good Vibes. This video helps me and others with pain and sensations. Also there are many other binaural beat videos that help with neuropathy. Listen to it with no speakers and on the lower end of the volume spectrum and be next to the speaker enough for the vibration to be affective on the specific body part. Give it a try. Hang in there.

Ray, you're so right. I used to ride my bike for miles also, and miss that. The 'feel-good neurotransmitters' of endorphins kept me going through thick and thin. That's an excellent idea collecting pertinent information about your condition, and describing it in detail to your doctor.
I find, though, some specialists seem to be in a rush misdiagnosing (in my case) and I end up back to square one. Haven't found one I can relate to in terms of getting it right. They decidedly 'out-talk' me regarding my condition, and who knows better than ourselves when it comes to pain?
Have had endless professionals, and it's becoming not only draining but very stressful. I've never had a doctor actually examine my bad foot, and compare it to the other for structural foot deformity.
Now I am through with pain specialists, Pregabalin, temporary short cuts, and shall see an orthopedic surgeon and go from there. I used to have a great sense of humor, but it's hammered to hell at this point. You still have it though which is a marvelous attribute.

I try very hard to be discriminating with the information I add and then carefully read in my PN 3-ring binder. It amuses and discourages me to see how much "bad" information is out there, primarily online – by "bad," I mean everything from wishful thinking disguised as sound medical advice to sites trying to see their "exclusively prepared" (and criminally overpriced) vitamin and mineral supplements.

An example? Every so often, I have encountered a mention on one of the trusted sites about PN and swelling. What I've read has never gone into as much detail as I might like, but it has me wondering: for years, my doctors have commented on my swollen feet, assuming edema or something else equally treatable. Nothing they've suggested or I've followed up on has reduced the swelling. Since this swelling was first noticed about the same time that my balance difficulties interfered with the fun of being alive, is the swelling involved with my PN by making good blood flow to the nerves of my feet more problematic? Right now, that's only a question in my mind, but it's one I plan to ask my doctors.

And someone here, on reading this, may have had some experience with PN and swelling, whether swelling was found to be related or not.

Another question rolling around on my brainpan these days is could my achy knees be the result of my PN or the result of a lifetime of running and all the high-impact abuse my knees have sustained over all those years; in other words, is the achiness merely arthritis (not that there's anything "mere" about arthritis!). If it's part & parcel of my PN, I may have to grin and bear it. But if it's arthritis … well then, I'll continue to exercise "through" the achiness, knowing that exercise (at least in my experience) is the best way to reduce the woes of arthritis. So much to puzzle out!

I see it's approaching 9 am here in Colorado. 9 am is my self-agreed-upon start to my work day. I'd better hustle and post this before the self-installed factory whistle blows. LOL

Ray

@ray666 Hi Ray, I like the idea of the binder and I wish I started one 7 years ago. My wife said back then that I should keep track of "things in a notebook". Ughhh...didn't do it. I know, should have listened, I'll admit it! I do have all my test results through the years but never made any handwritten notes about progression. When did this start, when did that start? And, to those are recently diagnosed, my suggestion is to do what Ray is doing, keep track of things in a diary or small notebook. This could be vital information down the road when you go to a neurologist, and you're ask detailed questions about your PN. Many neuro docs want to know where the PN started and when and what did it feel like. Pain, numbness, burning? By the way, I started writing things down in Feb of this year so it's never too late to learn from your mistakes. Ed

@njed Good morning, Ed

Frankly, I also wish I started my binder or any proper recordkeeping a long time ago. Just as you point out, a doctor's first question is often, "When did you first experience symptoms?" I fumble every time that question is asked of me. I have to answer and say, "Oh, I think about ten years ago (long, long before I started my binder) when I first noticed having occasional episodes of wobbliness." But I can never answer a doctor with the specifics I wish I had at my fingertips. Now, though, I'm keeping good track of such details. I've my binder to turn to before any appointment so that I can be ready with dates, symptoms, duration, etc. I also suggest to anyone – especially someone whose only recently been diagnosed with PN (but to anyone, actually) – start note-keeping (a 3-ring binder like mine, a manila folder, or an online file … whatever works best for you. The information you save will one day prove invaluable.

Ray @ray666

I couldn’t agree with you more, but how do you get by with using it in your doctor’s office? I always take a one-sided single page typed sheet of paper with very organized bullets of relevant information or updates from last appointment to share, with a copy for them. Some doctors embrace it appreciatively, and I see later on in my visit report that they did indeed use/reference it. But just as many doctors refuse it, as if I’m handing them evidence that could be used against them and they think it’s better not to accept! I went to use my cell phone notes function once to pull up a report and was asked to put my phone away. I have been asked to put my pen down while taking notes, being told they’ll give me a visit report with all I need! Regardless of whether they take it or not, if it’s the type of 6 month or annual visit I want to make sure I get in what I want vs walking away realizing I forgot something, I try hard to read from my simple, easy-to-read large font one-pager, regardless of whether they accept a copy or not. But a binder? While I think it’s absolutely brilliant, I’m glad your doctors welcome it, because mine rush through my appointments so fast that you wouldn’t be given the time to turn a page. I would love to hear how you might handle a doctor who might be resistant to your exceptional note collecting and sharing? (And I’m very happy if you’ve never been met with resistance, as that would be the ideal state!) Debbie

PS My sheet ALWAYS includes positive things, I know they absolutely love where we can be positive and just not be downright negative all the time. I highlight those in GREEN and use happy face emoticons so they stand out! A couple bullets might be highlighted YELLOW for “caution” items. Then hopefully a smaller number of bullets highlighted RED for the “Help Needed or Not Working” issues.

Good morning, Debbie

I'm laughing. Or at least smiling – smiling in sympathy! First, I would never bring my "famous" binder with me. Imaging myself doing that is part of why I'm smiling. The other part – the sympathy part – is how I sometimes fail to tell or ask my doctors all that I had hoped to tell or ask. What I'll do (similar to what you do) is have my tells and asks scribbled on a slip of paper or index card, tucked quietly like a bookmarker into whatever book I'd brought with me to fill the time waiting – waiting in the Waiting Room (which usually isn't that long), and waiting in the exam room after the person who's taken your vitals says (as they always do) "The doctor will be right with you (which he never is). When the doctor comes in, I'll leave my info slip or card in my book for ready-reference. Eventually, I'll take it out. My primary doc is great about my "being prepared" with notes; she'll listen attentively, often entering things I say into my medical record right then & there. If I hand her an Excel doc with my recent blood pressure numbers, she'll thank me and tell me the numbers will also be entered into my record. But my other doctors? Some will seem appreciative of my "being prepared, others though – you can almost see them cringe as I begin to read from my little info slip (my "patient's crib sheet"). Usually, I'll continue speaking about the items I want to tell the doctors (new symptoms, how that new med is working or not working, etc.) and asking the questions I want to ask. Sometimes I'll get through the whole list, but other times I won't. I'll get that "Time's up!" feeling (as I guess you do, too) about 20 minutes in, reminiscent of a high school test proctor saying (sharply), "Pencil's down!" It's a battle, isn't it? That's why your post got me smiling!

Ray