Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

Ray - hope you went for coffee. I too have come to points where I don't know if I should do this or that. Anyway, I usually give it a try unless I sense danger and when I can do it, I have a great feeling of accomplishment. Ok, I can still do that! Hmmm. So, for me, I'd see that walk as a challenge and usually the end result will justify the effort in several ways.

Reminds me of my running days. The marathons and halfs, 5 & 8 & 10k’s, all grueling, sweating, wondering “why the heck am I doing this again?” moments; until you cross the finish line, and the high you felt for finishing made every drop of sweat worth it 😊

Reminds me of my running days. The marathons and halfs, 5 & 8 & 10k’s, all grueling, sweating, wondering “why the heck am I doing this again?” moments; until you cross the finish line, and the high you felt for finishing made every drop of sweat worth it 😊

Wow, thank you everyone, I love reading these posts! I'm in the early stages of "giving up things I don't want to give up," but I've been dealing with this pain for 7 years. Vertigo and balance, too, but I think they're unrelated (I get a rare kind of migraine and my neurologist says the vertigo I get is a type of migraine or are migraine-related, but when I get a "vertigo spate," it lasts for days). Right now I am struggling with a family wedding in Sri Lanka my sister desperately wants me to attend. I am in the US. That'd be over 22 hours of travel minimum, with 2 flights (18 hours of flying time). My pain is localized to the backs of my thighs--sitting and especially standing up is excruciating for about 2 minutes each time I do it, especially if I've been sitting for a while. I have been struggling with how to make that trip... maybe if I fly first class and can lie down I can be comfortable, but that's $20K. My son has been home with me this weekend (I'm 62, he's 35) and he has convinced me that it is 100% unreasonable to consider attending that wedding, and maybe I needed someone's absolution or something, but now I feel more comfortable telling my sister "no." It's not marathon shopping, but honestly... when I back up to 30,000 feet and look at it, it's a completely insane thing to consider.

It has been very helpful reading everyone's comments about things they've had to sacrifice in the name of frustrating idiopathic undiagnosable crippling damn pain.

Also, FWIW, I've seen a neurologist, a pain specialist, a physical therapist, and have been on a course of pregabalin (Lyrica) up to 800 mg/day (divided dose), with nothing but side effects to show for it. I also tried numbing cream, LOL. This sucks, but it's nice to know I have a tribe. Thank you, everyone.

Good morning, Libbie (@libbiehyman)
I enjoyed reading your post and would like to say I totally understand your dilemma. You may have read mine where I mention being unsure about going to a local coffee shop (uneven sidewalks, long sitting, an unfamiliar path to the restroom, etc.) –– a far cry from a flight to Sri Lanka! I believe there's an art to knowing which challenges are important to take on, to avoid becoming a total stay-at-home, from those challenges that are simply "too much." I work every day on practicing the art of being about to tell one kind of challenge from the other. Good luck to you!
Ray (@ray666)

Thank you, Ray. These are such wonderful, supportive posts to read. I am definitely "choosing my accessibility battles." I was just diagnosed with severe osteoporosis, which really pissed me off. I joined a gym and am weight training and I go to a yoga class once a week, where I struggle clumsily in a class of people who can bend over while standing on one leg. I talked to the yoga teacher who was sweet and kind, and she said "set your mat up over by the barre. Use the barre to pull yourself up or to hold onto for stability if you need it." Well, THAT improved yoga 100% for me! So I'll drive 5 miles to a yoga class where I can stagger around like a newborn giraffe and clamp onto a barre for dear life, but I feel a whole lot more confidant saying "no" to a wedding 22 hours and 3 flights away, and less guilty about it after talking to my son and reading about what other people have had to sacrifice and how they've felt about having to say "no" to others. You guys are the best! THANK YOU!

libbiehyman | @libbiehyman
You have a wonderful sense of humor, Libbie! And a sense of humor is essential when dealing with our various infirmities. I have a dinner party this evening I'll soon need to get ready for. After reading your post, I find myself hoping that the hosts have a barre leading from their dinner table to their bathroom. LOL
Ray (@ray666)

Wow, thank you everyone, I love reading these posts! I'm in the early stages of "giving up things I don't want to give up," but I've been dealing with this pain for 7 years. Vertigo and balance, too, but I think they're unrelated (I get a rare kind of migraine and my neurologist says the vertigo I get is a type of migraine or are migraine-related, but when I get a "vertigo spate," it lasts for days). Right now I am struggling with a family wedding in Sri Lanka my sister desperately wants me to attend. I am in the US. That'd be over 22 hours of travel minimum, with 2 flights (18 hours of flying time). My pain is localized to the backs of my thighs--sitting and especially standing up is excruciating for about 2 minutes each time I do it, especially if I've been sitting for a while. I have been struggling with how to make that trip... maybe if I fly first class and can lie down I can be comfortable, but that's $20K. My son has been home with me this weekend (I'm 62, he's 35) and he has convinced me that it is 100% unreasonable to consider attending that wedding, and maybe I needed someone's absolution or something, but now I feel more comfortable telling my sister "no." It's not marathon shopping, but honestly... when I back up to 30,000 feet and look at it, it's a completely insane thing to consider.

It has been very helpful reading everyone's comments about things they've had to sacrifice in the name of frustrating idiopathic undiagnosable crippling damn pain.

Also, FWIW, I've seen a neurologist, a pain specialist, a physical therapist, and have been on a course of pregabalin (Lyrica) up to 800 mg/day (divided dose), with nothing but side effects to show for it. I also tried numbing cream, LOL. This sucks, but it's nice to know I have a tribe. Thank you, everyone.

Tell your hosts you'll come if they set their party up in a dance studio with your chair near the wall. Acquire some tulips or something and a passable bottle of wine and you'll be all set!