I misread the clock. I don't usually have any alcohol before five pm. It was three pm and I poured myself a shot of Drambuie because I though the clock said five.. My brain was really on 'it's time' mode because it's light out and it gets dark at 4:30. Oh well, it tastes so good.
Meanwhile I think I finally have an explanation for why I've been getting weaker and weaker. There is an autoimmune symptom/disorder that attacks the muscles.
You know those people you hear about who go to doctor after doctor with something that finally gets diagnosed after years? Yes some of them really don't have anything but some of them actually do. I'm sure I'm in the category 'the doctors aren't taking me seriously'.
Now I think I figured out what it is.
My autoimmune disease has been rare from the start. I can't find a single other case of someone whose mouth is attacked by those auto-antibodies. Mine is one and it's well documented with obvious signs and biopsies. In other words it's not my imagination.
One clue to what's going on now: If my arms are exposed to Sun for more than ten minutes or so the reaction doesn't occur until the next day. The next day my arms look like one giant confluent hive reaction: red, swollen and itchy as all get off.
For more than a year, maybe two, I've had increasingly weak muscles and the day after I do much in the way of exercise I get pain for a few days. It's like the pain you get when you've walked all day at Disneyland (or any other long term exertion you aren't used to). It's due to lactic acid buildup in your muscles.
And I've been increasingly short of breath. I get short of breath walking to the mailbox but I can mow the lawn, or rake, or blow the pine needles off my very long driveway.
My heart and lungs have been thoroughly tested and they're fine except for a bit of asthma.
So the doctors say it's just because I'm overweight and don't exercise. But that's a chicken and egg problem. If I exercise it hurts the next day and the prednisone I'm on causes increased weight gain. So I exercise less and less.
I kept telling the doctors over and over, it's more than that. I've never been one not to get a lot of exercise until now. Friday when I fell and my leg muscles were too weak for me to stand up I decided to look at what kind of autoimmune diseases can cause that. And sure enough, it's rare but known to occur.
This isn't like fibromyalgia or chronic fatigue syndrome for which no observable signs can be found, though those people have my sympathy. There should be blood tests and more biopsies that show inflammation. Now I just need the Kaiser doctors to listen to me. I think they will if I bring in the research.
Unfortunately I'm already on the maximum amount of prednisone I want to be on. Maybe I can work on a more consistent regimen of NSAIDs.
Thank you all for being there to listen to my frustration.
No hugs needed.
Meanwhile I think I finally have an explanation for why I've been getting weaker and weaker. There is an autoimmune symptom/disorder that attacks the muscles.
You know those people you hear about who go to doctor after doctor with something that finally gets diagnosed after years? Yes some of them really don't have anything but some of them actually do. I'm sure I'm in the category 'the doctors aren't taking me seriously'.
Now I think I figured out what it is.
Newfound autoimmune syndrome causes muscle pain, weakness: Rare syndrome can be treated with anti-inflammatory drugs
A previously unknown autoimmune muscle disease involving sudden onset of debilitating muscle pain and weakness has been identified. The syndrome easily could be mistaken for other muscle diseases that require different treatment, so the findings are expected to help physicians treat patients...
www.sciencedaily.com
My autoimmune disease has been rare from the start. I can't find a single other case of someone whose mouth is attacked by those auto-antibodies. Mine is one and it's well documented with obvious signs and biopsies. In other words it's not my imagination.
One clue to what's going on now: If my arms are exposed to Sun for more than ten minutes or so the reaction doesn't occur until the next day. The next day my arms look like one giant confluent hive reaction: red, swollen and itchy as all get off.
For more than a year, maybe two, I've had increasingly weak muscles and the day after I do much in the way of exercise I get pain for a few days. It's like the pain you get when you've walked all day at Disneyland (or any other long term exertion you aren't used to). It's due to lactic acid buildup in your muscles.
And I've been increasingly short of breath. I get short of breath walking to the mailbox but I can mow the lawn, or rake, or blow the pine needles off my very long driveway.
My heart and lungs have been thoroughly tested and they're fine except for a bit of asthma.
So the doctors say it's just because I'm overweight and don't exercise. But that's a chicken and egg problem. If I exercise it hurts the next day and the prednisone I'm on causes increased weight gain. So I exercise less and less.
I kept telling the doctors over and over, it's more than that. I've never been one not to get a lot of exercise until now. Friday when I fell and my leg muscles were too weak for me to stand up I decided to look at what kind of autoimmune diseases can cause that. And sure enough, it's rare but known to occur.
This isn't like fibromyalgia or chronic fatigue syndrome for which no observable signs can be found, though those people have my sympathy. There should be blood tests and more biopsies that show inflammation. Now I just need the Kaiser doctors to listen to me. I think they will if I bring in the research.
Unfortunately I'm already on the maximum amount of prednisone I want to be on. Maybe I can work on a more consistent regimen of NSAIDs.
Thank you all for being there to listen to my frustration.
No hugs needed.
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Sure, the battery was as good as gone but I probably would have been able to replace that.
