Whats my future?

Hi Andy @andyjustin, I'm not sure I understand what diagnosis you have causing the extreme pain. I haven't heard of tri myalgia but I think I have something similar - polymyalgia rheumatica (PMR) but it's currently in remission. When it is active and flaring up the pain can be incredible like you mentioned. My second time around with it I made some lifestyle changes like you what you are doing now with diet and exercise which I feel does help keep it in remission.

Do you see a rheumatologist? Just wondering if they have some suggestions or treatment to help with the pain.

@ray666 Ray -- The title "What's my future" really does play into each of us in different ways and sorry to hear that you have decided not to continue with the lease of the cabin. These decisions are not easy. They are part of having PN. I had to give up my boating for 60 years. I try to replace that experience with an alternative, so we are doing a cruise in the fall. I'm going from a 25-foot boat to one 985 feet anticipating the bigger boat a/k/a cruise ship will not impact my poor balance. On rocky days, I will use my cane and stay put on deck 11 enjoying the views of the ocean....like I did with my own boat. On this bigger boat, my wife and I won't be fishing from it, but we will be there only in a different way. I'd rather be in my own boat, but I've decided to let someone else captain the ship. All part of having PN ... doing things in different ways. Ed

Hi, Ed (@njed). I’ll write a bit more later, but just now, I’m awaiting the arrival of one of my homecare nurses. Yes, giving up the cabin was tough, and my partner and I, too, will create a few alternatives in the coming months. Something I have to be on guard for: Is making a life change due to my PN or sepsis? Honestly? Most, if not all, of my recent life changes are due to my sepsis. Sepsis has truly been a blight on my life, far more than my PN ever was. Fortunately, my doctors tell me that I will get over my sepsis (at least my foot wound will heal), and I should be able to restore a good deal of the life I’m currently setting aside. PN, unlike sepsis, is for keeps. Things I’ve set aside because of my PN will probably have to remain set aside. // A bit more later, Ed. Here’s wishing you a fine day and a fine weekend! –Ray (@ray666)

Good morning, Ed (@njed)

I can always rely on you to understand what I’m trying to say, even when my words are an absolute trainwreck of sense. I hadn’t noted––but you have, and now I do, too––that both my maladies have their battlefield headquarters in my feet: my PN is personified by weakened sensory activity, and my sepsis by an 8”x1”x1” wound of the sort you might expect had your foot been struck by broadsword. (I shouldn’t be writing this before breakfast.)

You’re so right, too, when you say that we shouldn’t expect our illnesses and injuries to arrive one-by-one at our age. To paraphrase Hamlet’s uncle Claudius: “When aches and pains come to those of us of a ‘certain age’, they come not single woes but in battalions.”

Generally, however, we always have the options you cite, such as “Keep improving, keep moving.” Why don’t we exercise those options, Ed? What do you say?

Have a glorious weekend!

Cheers!
Ray (@ray666)

Have you heard of Botox injections for this? You might do some research on that. Because my neuropathy is progressing, I was having trouble lifting my eyebrows, and I had a permanent scowl. I had Botox injections done between my eyebrows . I could actually feel that tight brow area relax. I look better, but a bonus is the release of tension in my brow. I did some reading then about Botox as a treatment for neuropathy. You might look into it.

Try myalgia aka tic de la rue, anyway, yeah, I’m a mess. My voice is croaking Muscles my neck Muscles are dropping AKA turkey neck but I have a great attitude just taking it as it comes all of these new symptoms croaking and Delarue suck a lot of doctors reality or my reality. I’ve been told this is just the way it’s gonna be. I am sure I take medicine for pain, even though the pain sometimes cuts through so I take more medicine gabapentin but eventually, they’re gonna move onto opiates when the gabapentin doesn’t quite do it and have to say with some of this facial pain gabapentin doesn’t do it in the last week. I’ve had over 12 episodes. My jaw goes from being numb to Feeling like a sledgehammer is hitting the side of my head anyway I’m just Venting a little bit today and I’m sure like everybody else. I don’t think you know more than an hour without thinking about it even when it doesn’t hurt so much I’ll leave it at that everybody have a great day.

@ray666 - Rqy ---- the very first neuro doc I went to around 2014 or 2015 was actually a 70 year old neurosurgeon as I have L-3 to S-1 issues and I figured he'd fix me up, get rid of the numbness and like a tooth issue, it would be gone in a few days. Yea...right! He said my back has issues but not causing the neuropathy. He did refer to me a neurologist familiar with neuropathy. But as I had my hand on the door to his office ready to leave, he said let me give you one piece of advice. He said keep moving. Won't forget it and he was right.