- Post starter
- #13
EvenStrongerNow
Diamond Member
@goingonhope, thank you for sharing that with me. I really like the idea of keeping visible index cards. I have a whole box of index cards that I can use. I used to write down my symptoms back when things were really so much more difficult health wise. I really think keeping track of my symptoms did me in anxiety wise though I know that having that stuff in my records will help the doctors ultimately to see a clear picture of what happened.
I also just found some of my records in an old piece of luggage that I haven't been in since a couple of years ago. There are a lot of records in there so it seems I will only need to contact old doctors to get my MRIs on a disc as well as the readings from some of the other tests that I don't have in my current records.
It was really trying back then. Most days, I woke up feeling stiff but feeling pretty good but feared so much as the day progressed because I didn't know what I was in for. Symptoms would start first with the heavy fatigue and brain fog around noon or 1 and then get worse from there into the night. Some days, it got so bad, I could barely walk. The tingling and numbness was one of my worst offenders. Falling down a flight of stairs because I couldn't stay balanced caused me less distress than did the tingling in my scalp on one side of my head at night when trying to sleep.
I thought I was going insane. I would lie awake telling myself over and over again that there were not tiny microscopic bugs in my head, that no bug could crawl up and then start over in the same initial spot to crawl up again in the same pattern. Thankfully, after a couple of increases in the Gabapentin they had me on, that reduced to almost nothing.
The pain my legs would also get so bad. My muscles felt like they were constantly expanding and contracting. The pain from that was unbearable. I still experience that every now and again but not for long periods of time--no more than 2-3 days at most.
I still experience blurred vision when I look to the side to try and shave my arm pits in the shower and the heat from the water makes me feel severely fatigued, in pain and all kinds of things. I have to take luke warm showers or baths a lot of the time.
The cognitive decline has to be the worst symptom I've ever experienced and is my biggest symptom lately. Forgetting simple math, word finding, forgetting what I was saying mid sentence, forgetting people I met, slurring my words, forgetting how to spell, experiencing mental confusion, etc. My brain used to be so sharp and I read/study things all of the time so I know I'm keeping my brain up to date as much as possible. I try to do word puzzles and things to work my brain. I'm so glad the brain can learn to compensate in so many ways.
I also just found some of my records in an old piece of luggage that I haven't been in since a couple of years ago. There are a lot of records in there so it seems I will only need to contact old doctors to get my MRIs on a disc as well as the readings from some of the other tests that I don't have in my current records.
It was really trying back then. Most days, I woke up feeling stiff but feeling pretty good but feared so much as the day progressed because I didn't know what I was in for. Symptoms would start first with the heavy fatigue and brain fog around noon or 1 and then get worse from there into the night. Some days, it got so bad, I could barely walk. The tingling and numbness was one of my worst offenders. Falling down a flight of stairs because I couldn't stay balanced caused me less distress than did the tingling in my scalp on one side of my head at night when trying to sleep.
I thought I was going insane. I would lie awake telling myself over and over again that there were not tiny microscopic bugs in my head, that no bug could crawl up and then start over in the same initial spot to crawl up again in the same pattern. Thankfully, after a couple of increases in the Gabapentin they had me on, that reduced to almost nothing.
The pain my legs would also get so bad. My muscles felt like they were constantly expanding and contracting. The pain from that was unbearable. I still experience that every now and again but not for long periods of time--no more than 2-3 days at most.
I still experience blurred vision when I look to the side to try and shave my arm pits in the shower and the heat from the water makes me feel severely fatigued, in pain and all kinds of things. I have to take luke warm showers or baths a lot of the time.
The cognitive decline has to be the worst symptom I've ever experienced and is my biggest symptom lately. Forgetting simple math, word finding, forgetting what I was saying mid sentence, forgetting people I met, slurring my words, forgetting how to spell, experiencing mental confusion, etc. My brain used to be so sharp and I read/study things all of the time so I know I'm keeping my brain up to date as much as possible. I try to do word puzzles and things to work my brain. I'm so glad the brain can learn to compensate in so many ways.
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