@jennmc I empathize with your having to cut down on the number of things you enjoy. I had to retire from the ministry when I was 55. I went from having an overfilled schedule to having no responsibilities aside from taking care of our new home.
I also have an scs, for small fiber peripheral polyneuropathy, with burning pain in my feet and ankles. Mine was implanted in 2017, and it was wonderful! For a year. Then the stimulator needed to be adjusted every few months for a year. Then it stopped working for me. I still have it on, and it's possible that it helps a little. I had a Dorsal root ganglion stimulator trial, and it did nothing. I'm thankful that I don't have foot drop. I just have to be careful, especially going up stairs, to lift my feet enough so I don't trip.
I've tried so many medications that I can't remember them all. Morphine sulfate contin is the only medication that's helped long term. I'm going to switch to buprenorphine soon because of the hassle of trying to get a therapeutic dose of mscontin.
Good for you, doing the laps in the pool. I've heard a lot of positive things said about water exercise. Unfortunately, it's not an option for me. Have you ever been in a pool exercise class? I'm generally a hermit by nature, but support groups have been helpful.
We will celebrate our 50th anniversary next June. We've always wanted to go on an inside passage Alaskan cruise, and we hope that Covid19 won't prevent that from happening next summer. Our daughter is a Coast Guard wife, with 2 girls, 2 and 4, and our son has a daughter in the 3rd grade. We don't get to see them often, as our son lives in Indianapolis and our daughter is in Alameda, CA. We live in central Oregon, so it's only a 12 hour drive to Alameda. At least we can do video chatting with them.
I suppose you've been to a PT, and have exercises you can do at home. My wife does a nightly stretching routine that she's found helpful. I count my yard work as my exercise routine. We live in the country on ten acres, with a lot of landscaping I've been developing for 15 years. Now I'm trying to make it lower maintenance. Fall is a busy time of the year, pruning, planting, transplanting, getting things ready for winter. The more I do in the fall, the less there is to do in the spring.
As usual, I've rambled on way too long, and I should have been asleep an hour ago.
It's good to meet you.
Blessings.
Jim
Jenn, my Granddaughter has been diagnosed with this, it is a nightmare. Have you looked into the Kentuckian Intergrative Medicine by Dr Cruz. I think HIs office is in Indiana. My daughter is considering looking into this Or Italy where they treat this with an IV . Also Dr. Cruz also does something similar but the one treatment that works has not been passed by the FDA. You live closer that we do to that office, I honestly think it would be worth it, there are great reviews. Barb