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I got the same response while in hospital. I complained often that the sock on my left leg/ankle was too tight and being pumped up even tighter. The docs/nurses explained it as above, except in my case it was 'IDIOT neuropathy'! But, it's funny that that is where the worst of my neuropathy has taken hold. Didn't know how to respond at the time, and now the damage seems to be done! Sheesh!Originally Posted by Al
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Trudy,
Interesting story, and an entertaining one--except for the ensuing pain, of course! In my case, it would not have been sciatica. True, my back spasmed badly soon after the accident, but the neuropathy started about 8 days later, and was on the tops of both feet. The neurologist did run an ANA test, which was slightly elevated, but not high enough to suspect lupus. But he did not look for any other autoimmune involvement. These days, the recommendation is to do an ANCA test for any unexplained mononeuritis. But he did not order such a test at the time. But from other evidence, I know that I had had disease activity some years before it it was diagnosed.
Al
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I had this for many months in the rehab facilities after release from hospital treatment. I needed weekly transfusions the first month and any exercise like walking up ten steps would raise my pulse 25-30% and cause wheezing from shortness of breath if I pushed myself further. As lungs healed and bleeding reduced and kidney function improved, anemia improved along with breathing and ability to exercise more. I can now (18 months later) walk a half mile on most days with only mild shortness of breath requiring a short rest.
I had serious neuropathy for years from diabetes before Wegs attack but the Wegs made it worse. Mine is usually worse in mornings or when I am sitting down like a couple hours. Walking seems to help improve the circulation which seems to reduce the numbness a little but it is always present but some times worse than others. For me much of the pain decreased as numbness increased but then weakness and nerve damage also increased which decreased my mobility and added a higher risk of stumbles and falls along with loss of balance from Wegs which is very bad combination and dangerous for me with my osteoporosis from diabetes and Wegs (pred meds).
Finding a job that you can handle can be a challenge when your endurance is limited from the Wegs. Could you try working half days to see how it goes for you?
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Al, I've been researching shoes and orthotic inserts, too, and get the feeling many of them can help the pain of bunions, too, by improving the overall dynamics of your feet... alignment of bones, arch support, etc. I should go to a podiatrist, but it seems to be on the back burner at the moment with my having neglected dental and vision problems on top of dealing with WG.
Anne
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A racing heart is common with anemia, since the heart is trying to work harder to get oxygenated blood to the tissues. The important question is why are you anemic? It needs to be dx'ed and treated.
As far as standing/walking for prolonged periods with moderate to severe PN it is very individual. You can test it out yourself before applying for jobs that require it.
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Anemia is closely related to kidney issues, as they produce the hormone that tells the bone marrow to make red blood cells. I am familiar with anemia. My hematocrit, the prime indicator of marrow issues, is now at 32, which is my best in months. It is still way low, compared to "normal", but is actually a big improvement. But my O2 levels are pretty good, and my lungs have mostly recovered. You take your improvements where you find them.
About the neuropathy: Interestingly, I have the most trouble when I am sitting in place wearing leather shoes, or in bed. Walking or otherwise being active is good; staying busy seems to help immensely, but going one-one-one with the sheets is a nuisance.
Anne, if you have a need for new shoes, I can recommend a great vendor in Seattle. You don't get that kind of service at Nordstrom's, or at Neovita, which is sort of the HairMasters of shoe fitting. (The podiatrist said that he could make a custom orthtic for me at so many dollars, but that this guy could give me a shoe and the orthotic for less. Plus he would give me some stretching exercises. I have had no foot problems since, other than for the neuropathy, which will always be with me.
Al
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Thanks, Al,
I've found a pair of waterproof hiking boots that have more room than most in the front of the foot, important for bunions, and also seem to give good overall fit and support for my feet. I've used gel toe separators and bunion pads in them with success. Other than that, I'll be trying a couple of somewhat more stylish but practical things I've bought, when all this Pacific Northwest muck starts to dry up. I spend a lot of the year in sandals, have already found some that are therapeutic for my bunion feet, and have been investigating others..... there are orthotic shoe and sandal companies online and other sites especially for people with bunions, and quite a selection of bunion aids that can be worn with shoes. I know there are a lot of shoes I can't wear, but am finding more and more encouragement that there are decent alternatives. But if I get discouraged, I might want to know the name of that vendor. If you'd like to PM me with his name, I'll save the info! Otherwise, I'll PM you and ask you, should that time come.
Anne
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