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@jesfactsmon Hi Hank, Your post about Linda made me cry. It is the happiest, saddest account of your day. I had no idea Linda had not been out in such a long time. To go out today, with such enthusiasm, and have such frightening results is just chilling. Do her feet normally turn like lobster feet? CRPS came to my mind when reading your description. I have a history of fibromyalgia, but never had trouble with motion. This is a new one to me. I do know that in one day, I could go to feeling decent to horrific with the whatevers of Neuropathy. I would get very pissed off from excruciating pain, and go and vacuum rooms in my house. Sometimes the pain would be excruciating, and I would walk down the street like the angry warrior. I could have 2 days in a row where I was pain free, and the next, could not bear how bad it was. When was the last time Linda has been to a neurologist? I want to tell you that today, I see the DRG as promising. I am exhausted emotionally, but I do notice a lot less pain, and balls of feet are less like solid concrete. Toes feel less stuck together. I want to talk to Linda, Frank. I think it is time I talk to her. Maybe we can all speak on speaker phone, or arrange a zoom conference. I have no idea how to do this, but my husband does. My heart goes out to you and Linda. Leading a life like she is leading is unfair. Just unfair. We cannot be on this earth to suffer so. Get back to me Hank, when you can. I will get here as soon as I can. Lori
Replies to "@jesfactsmon Hi Hank, Your post about Linda made me cry. It is the happiest, saddest account..."
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Hi Lori, I think Linda's driving issues (started in 1983-4 or thereabouts) were attributed by us to fibro after we knew about her fibro, but learning about the existence of the condition Central Sensitization lately in discussions with you and Rachel not long ago makes us both factor that into the equation. She is and has been super sensitive to pretty much everything her whole life or certainly since we've been married. And when she was younger and more able to cope it was not a problem. Now that her body seems to be weakening it's becoming a problem. Especially noticeable since about April of '19. I mark it to after she took a steroid for a sinus issue, perhaps in March-ish of '19. She got her first severe itch problem maybe in April? It was bad for a while, quite bad. After a few months it seemed to be less of a problem. But her energy is taking a hit from the endless foot burning. Never stops but varies between a 2-3 level sometimes to 7-9 most of the time or maybe 65% of the time. Thank god she sleeps! That is a saving grace. Lori I think you are dealing with much more pain than Linda is (and that is saying something). When you describe your situation it boggles my mind. I am SO HOPEFUL for you and the drg install you are trying. My fervent hope is that you keep the 40% relief and get even more, much more after you have the actual installation assuming you do. I hope something like this can help Linda. I am dubious only because she is so sensitive that things that might help a regular person can backfire bigtime for her. So many things that other people recommend because it has benefitted them seem to do the opposite for her. She is just getting ready for bed (I just got up -we tag team - long story) but tomorrow I will read her your post with your suggestion to talk and let you know. You are a very good lady Lori. It's hard to believe so many fine people are having to cope and deal with SO MUCH just to be able to jst do the basics and live their lives. Sheesh! I appreciate this website so much as it really helps in so many ways to have it. Thanks my friend, will be in touch. Hank