PN: Do You Think About Things Like This, Too?

Ray,
I really needed to hear this today! I have been headed towards gathering together a huge list of what I can't do- like waking, gardening, shopping, housework- lumping together huge categories, when, in fact, I CAN: cook, sweep small areas, blow the leaves off the driveway, push a shopping cart, dust and polish furniture, read, sew, write, teach, drive, water the garden, cut flowers- in fact a host of useful and life affirming activities- I have a wonderful husband, loving siblings with whom I speak daily, supportive friends, great neighbours, a part-time job, two beautiful sons and four loving grandchildren! Who am I to complain about wonky balance and lack of stamina!
"Accent the positive, eliminate the negative!!"
Thank you, Alexis

@ray666 you’re very astute. PN is not the end of the world.

For me, it’s just one of several things I battle everyday. My life is mostly on hold. I literally can’t drive most of the time because I am profoundly exhausted, have double vision, and pushing myself just makes things worse. I could go on but you get the picture.

I do go to to church, pick up my groceries, doctor appointments…

Hobbies keep me out of trouble! I paint, do jigsaw puzzles, and work on my family tree.
I’m blessed.

I play guitar and sing... So when my hands start to hurt, especially my palms it deflates me a bit, It's like taking something that I'm passionate about away..
So when I see improvements I'm happy but cautious because when the wife wants to go on walks I'm hesitant unless I've had a good day.
I feel if I abuse my good days my improvements will stop
I'm a newbie to PN, I noticed it last January for the time..I felt something wasn't right, and from that point on it got worse(Feet and slightly hands).. until I had restless legs...
But now with the combinations of Vitamins and Herbs, Lidocaine, and one of those Amazon foot shockers:)
I feel like I'm on the mead...
I did try gapin(sp?) but Lycria worked the best..But I quit it several weeks ago... I didn't like the loopy feeling I got.. weaning off at first I just quit and used .75mg at night for restless legs and after I got the Primrose that I take at night I quit Lycria a couple of weeks ago.
I know this post was about something else but I wanted to explain a little...
So yes I've had to make adjustments and my wife is patient with me... I still mow the grass but I do the front and back on different days.. I'm just scared of abusing my progress...
I feel for other people who have it so much worse than me... My Aunt had it and ended up in a wheelchair but maybe she was diabetic? I don't know...I'm not, I've had all the tests..but
My Family Doctor/Doctors have abandoned me, I guess since I didn't want to take prescription meds and I wanted answers to what started this problem it wasn't an easy fix because all they wanted to do was follow the computer script...
So do the best you can each and every day, take the bad days the best you can because a good day is coming.

Good morning, Alexis

I'm with you! As I study myself––which I may do far too much of ––I come to understand how is easier to be pestered by the problems, like the things I am now having more difficulty doing––than it is to remember all the things I'm still able to do. I believe that's because, at least for me, the things I can still do have become like white noise, simply because I do them and I continue to do them; the many things I can still do don't call attention to themselves, It's up to us, then, to give them attention,

Have a wonderful weekend!
Ray

Hi, Susan Ellen

You're right. PN is not the end of the world, but there sure are days when it can feel like it is! I guess that's the challenge we've all been given, to find tricks and techniques that work for us and help us to power through those "bad" days. In a few hours, I'm visiting one of my oldest friends, who is much, much, much more unwell than I am. Certainly, I'll not be "using" the occasion of my visit just to pick my spirits up. Still, it's impossible not to see others who have far greater problems and not come away with a more realistic understanding of our own condition.

Working on those family trees is great fun, isn't it? And deeply satisfying.

Best wishes,
Ray

Hi, casd57

I'm sorry to hear you say that you feel your doctors have abandoned you because you felt differently about some of the prescribed medications and were expecting answers to questions and didn't get them. I've felt that way at times, too. Of course, each of our doctors is different, as are our relationships with those doctors. I know my condition has frustrated some of my doctors, especially those whose specialties should be of help. I'm lucky, I guess, because I've learned to identify my doctors' frustration. If I didn't know them well, I might also feel like I've been abandoned.

I do believe in asking questions––lots of questions!––even if the answers are not forthcoming. Even if I don't get complete or good answers, asking questions helps me to believe I'm doing my part as an informed patient. Just believing I'm an informed patient keeps my spirits up.

I wish you all the best!
Ray

Hi, I can’t help but reach out and lend some encouragement and advice. Don’t give up on yourself, even if others do! Family doctors aren’t equipped to deal with patients like us— they have revolving door practices which succeed when they see more patients. This means they have less time to carefully examine your chart or do research about your condition. 1. You MUST be your own advocate! You need a specialist; preferably one at a major university. These doctors are teachers and they want to learn more, be on the cutting edge to advance medical science. 2. Educate yourself. You will have to do lots of googling and research, but the more you know about your condition, the more help you can lend your medical team. (You should have a team.) Look for clinical trials on sites like pubmed.gov or rare disease databases. Use your symptoms as a guide to find possible treatments based on studies for medical journals. This is how I was able to assist my doctor in securing Gammaplex infusions to treat my CIPRN. 3. Knowing your family history is important. No information is irrelevant. Did anyone in your family have autoimmune dysfunctions, like hands gnarled by arthritis, or skin conditions like psoriasis? If your symptoms are “idiopathic,” that just means you haven’t traced the smoke back to the gun yet. If nothing in your lifestyle is a contributing factor, ask to have enzyme tests and RA factor tests done to determine if your body is attacking itself. Immunosuppressive therapies could make a world of difference if you have autoimmune conditions. 4. Facilitate communication between your doctors. The more they know about the findings of other doctors, the closer you come to getting some answers, which hopefully leads to a higher quality of life through proper diagnosis and treatment. 5. Feed your body. If you have nerve problems, take Alpha Lipoic Acid and a good B-Complex, Omega 3,6,9, Fish Oil, Magnesium, and D3. Take magnesium at night before bed because it helps with inflammation. Inflammation sets in over night, which is why mornings can be so difficult. One of the best ways to absorb magnesium is by taking Dead Sea Epsom Salt baths. 6. I can’t stress this enough: BE CAREFUL WITH ELECTROSTIMULATION THERAPIES. Think of your nervous system as a motherboard with circuits. The synapses fire from one to the next, and they’re all connected. If one fuse is damaged, you may add insult to injury when you start introducing foreign signals. For example, I received PTNS (subcutaneous tibial nerve stimulation) treatments as a therapy to relieve an overactive bladder. A tiny needle is inserted into the heel, connected to electric current. A signal from your ankle tells your bladder to calm down! While this was an effective treatment, medical assistants, not doctors, administered the treatment. They wouldn’t/didn’t have the necessary bells and whistles going off when I was able to withstand the highest setting, which would indicate damaged nerves to a more well trained eye. If your nerves are already brittle, like mine were before I was aware of my Small Fiber Neuropathy, there can be unanticipated consequences. I didn’t have neuropathy before receiving this treatment. That’s not to imply this CAUSED any damage, but it likely added insult to injury. With independent research I learned that there’s no reliable long-term data to support the long-term mitigation of OAB because the demographic for PTNS treatment is elderly. They either quit or die before any consistent data could be recorded.
It can be easy to become discouraged by treatment fatigue. We don’t want our illnesses to define us, but the self discovery required to find a path to recovery can be a full-time job with little to no coworkers. It can feel really lonely. The temptation to do nothing and live one day at a time is understandable, but dangerous. If an illness is progressive, there are still ways to slow or stop the progression. A body (and mind) in motion stays in motion. I hope you’ll join me in the idea that working toward strengthening the body rather than passively accepting its limitations, is the most important mindset we can adopt so we can sustain and improve our quality of life and help others do the same by watching our positive initiative. 😊 Hang in there!

What wisdom, pointing to a game plan that strengthens rather than erodes the mindset.

For all of you here who have Idiopathic PN, I feel especially bad for you. Although I suffer from neuropathy in my feet and lower legs due to a back injury, at least I know what the problem is caused by.
If you are the scientifically curious type and want to keep up with the latest discoveries relating to human health and aging you might try signing up for the free weekly newsletter at http://fightaging.org . This can be difficult to read because it gets quite technical sometimes but there are Amazing discoveries happening in this field right now. I remain hopeful that some day there will be a cure for our neuropathy!

I, too, want answers; I have always wanted answers. Perhaps it is because I am female and 85 my expectations are lower than yours. I appreciate any medication that helps without bad side effects. I accept medication and realize that medicine is not a perfect science. It is challenges and experimentation, and continually finds new challenges as some progress is achieved.

I was in my early fifties when I started having lifetime medical issues: peripheral neuropathy, obstructed sleep apnea, and iron deficiency anemia. At about age seventy I had a total knee replacement, then viral meningitis, next a staph infection when I noticed a change in a lump on my arm, then idiopathic small fiber neuropathy. At about eighty I was found to have congestive heart failure and chronic kidney disease, incontinence, central sleep apnea, and I needed a D&C and a lumpectomy. I am grateful to have had four successful cardio versions and little pain. At eighty-five I have few expectations but I still want explanations and, if possible, help for balance and falling. I have a neurology appointment on Friday.

My computer supports my curiosity and the television serves the news junkie in me.