|Jul 06 2012|
I hope today is the worst of this shingles crap. My left side of my abdomen is burning, not unlike the RSD pain, but this seems to be more on the skin & not bone-deep. This started with my havingwhat I thought was a really bad cold & allergies, then when the blisters started on my upper back, I figured it was shingles.
I haven't been able to sleep but a car nap here & there. I've been taking Valtrex & threw that & the antibiotics up I think night before last? I dunno... one day seems much like another.
I did take a 1-day break from both the antibiotics & the anti-viral after I threw them up. Perhaps I should have taken another dose & not skipped a day, but tossing those was nasty. My body has a tendency to throw up when pain levels are very high, and they had been for roughly about 2-3 weeks, about the same time I was on Plaquenil, so I can't help but wonder if that was what set this off. I'm not on that anymore. It seems my immune system crashed on it & my rheumatologist office called me back & told me to stop taking it... now to recover.
I looked it up & it seems others have reported having problems with shingles break-outs while taking Plaquenil. At first I didn't give it much thought, as many people put things online that are a coincidence as being an "absolute truth", so I didn't look it up on purpose before, although it does seem there is a relationship or I doubt my rheumatologist would have taken me off of it.
The respiratory issues aren't gone, but are SO much better. I'm still taking the cold medicine (Corcidin HBP Cough & cold and Mucinex). I felt well enough last Saturday to celebrate my son's birthday, went to the party & felt not 100%, but a LOT better... just like I had a little stuffiness, a little "nose peel" (mostly inside my nose, but some outside as well), yet felt pretty good that day & had a great time.
The next day was rough, but tonight my abdomen on the left side felt like it was "too close to the fire". It itched, I scratched & again I have blisters - this time on top of blisters & skin peeling on my left side, as if I had a sunburn in a semi-oval area with a few blisters scattered.
I still have them on my upper back, where the blisters were very apparent & when I first knew that this was likely shingles (varicella - of a reactivation of chicken pox.)
Yesterday I felt horrible. My son called & wanted to go with me to a town about 30 miles away where fireworks are legal & it felt awful to tell him I wasn't up to it. It feel like the blisters are both inside my throat as well as in my lungs & on my skin I suppose is a good way to describe it (& I have to wonder if there isn't some truth to that?)
I still have some blisters coming up on my upper back, feels like some in my hair, but I haven't really looked. I had a few on my neck on the left side also, but my back, where this started is on both sides, some on my face, although they are minor in comparison. The ones on my back feel deep & I have skin coming off with more blisters under those I've scratched off.
My leg pain has been worse for a while, I think before the cold/allergy-like symptoms started, then it felt more like a bad flu, but without the stomach issues, then the blisters. They seemed to be clearing up when I talked to the neurologist office, so I didn't think much of it & figured that it was almost over. Wrong!
I soaked 2 T-shirts & 2 towels (thick towels) on my bed just last night. I felt feverish, but both my thermometers don't work, so I don't know. I felt feverish, then would have chills, then get hot again. It was about 73 degrees in the house & I was sweating more than I had in 107 degree temperatures on a camping trip & when we used to go to the desert when I was younger.
The day I had problems typing was kind of concerning, yet I knew if that got much worse, I'd call the doctor. My eyes have been watery at times & vision blurry. Interesting that my right eye has been tearing for several months now & the eye doctor gave me some erythromycin eye ointment for them.
What started on my back with the blisters is still there & hurts, and has spread to my neck & head & now on my abdomen, at least on the left side, just left of my belly button.
Right now I don't feel feverish, my hands & fingers know where they are. My left hand & fingers were the most affected when my vision was blurry & it took my hours to type & retype what I did that day. That was king of scary & yep! I'd have called the doctor if it had gotten any worse or hadn't gotten better. I figured my eyes were just tired, as I hadn't been sleeping very well, but I knew my hands & fingers having that sort of problem could be serious & possibly permanent, so it did concern me. I was so feverish and tired I figured it best to sweat it out. I was feeling cold at the time & earlier in the day, so I got under a heating blanket & sweat it out all night. I drink a lot of fluids usually anyhow, but I think I went through a couple of gallons of liquids in just that one night & thankfully that did go away. It seemed my body wanted & needed it, so I just listened to what my body was telling me & it paid off.
Anyhow, I'm still horse, although it seems better at the moment than it has been for some time (I've actually been horse for really about 3 years now. That seemed to start after the RSD did & after the 2nd SNB (sympathetic nerve block) when I had the fever for about 3-4 weeks afterwards.
The nerve pain/burning in/on my back is about as bad as the RSD pain & it does feel deep in my back, but not on my abdomen. I know I'm repeating parts of this, but want it to be clear & I can feel that "brain fog" coming on again, along with that pre-sweats/burning up feeling... similar to that feeling before a seizure.
After what I've read on Plaquenil & a relation to complex breast cysts & cancer, I have to wonder if the RA & reasons that one is put on Plaquenil vs. the now typical DMARDs for RA aren't the actual cause of the complex breast cysts, cancer & probably even this shingles stuff (I had to look up the name of that again [shingles], so I clearly still have some issues recalling names of things... interesting that most of that seemed to go away after it was so bad after the long fever/burning up after the Kenalog SNB the 2nd time. I have to wonder if what was going on wasn't brought up by the corticosteroid then & back in the late 1980's when I had what my old endocrinologist said was either "post-Graves' syndrome" or Multiple sclerosis. He thought I'd be in a wheel chair within 6 months if not far sooner, as I had muscle spasms so bad I could barely walk & couldn't drive but occasionally for a few months. I'd been given a Kenalog inhaler back then for allergies, which bounced my thyroid levels all over the place for about 2 years. I had problems with memory & doing every day things back then too, some back pain after an injury, which finally subsided & I was able to go back to work for a while, until I was rear-ended and I was able to work after another year or so, but the pain was just too much & I was told to file for permanent disability, as this was not likely to go away, and although there are ups and downs, I haven't been able to work since. The accident was over 20 years ago. I miss working, and it used to upset me not being able to do what I had been doing, but I've learned to live with it over time. I have volunteered & done a few short-term things here & there, but I think my energies are best now documenting this so others who are in the earlier stages of this might be able to benefit from it, and so doctors can find answers to what is causing all of this, treat it more effectively & so others won't have to go through what I have.
I've learned that I have to just take things as they come. What used to be alarming I've learned to simply deal with... numb hands, arms, in the morning, twitches & jerks of muscles, blurred vision when I'm not feeling well, etc. It's just things that come and go. The pain & more recently memory issues are probably the worst parts of this. I've made it I suppose like a puzzle to figure out, research, question the research that's been done and try to get through this sometimes a day at a time. I've learned I have to rest up to do anything, usually for about 3 days for a good day for long stretches. Exercise can help when I feel better & don't have this other going on, yet if I'm sick, or not feeling well, I know I need to stay down, or I get far sicker.
I watch a lot of TV and play video games, something I never used to like, but have learned there are some things to enjoy & how to record shows & skip the commercials, or watch things online with far fewer commercials, like Hulu & Netflix.
I read a lot on my laptop in bed too.
For now I need to stay down, let my body heal, get plenty of fluids & eat easy to digest food for the most part (I loved the tri-tip & other goodies at the Bar-B-Q, but I didn't digest that food very well & I'm pretty sure that contributed to my not feeling so well now, but it was worth it to me.) It was nice to get out around people & have some fun for a while. I just hope that I didn't unknowingly give anyone chicken pox while I was there. I checked with my son when I figured out what this was, & he said his wife's had chicken pox & I know he did, as both my kids & I had them all at the same time. I was VERY sick & after the chicken pox, I was getting sicker & the doctor then ran some labs & told me I had EBV at the highest titer levels he'd ever seen (9000+). My mom came to my house & took care of me & my kids back then. I was in my early 20's, had been pushing a LOT of units at both city college & at the university, completed a SCUBA instructor training course through my finals weeks, and became VERY ill.
Well, I'm tired, it's about 2am & I just discovered more blisters on my tummy, this time above my belly button, so I'm signing off for now. I need to find something to help the itching. I found, but itching, some more blisters on my back too, not all together, but on the right side there are a few scattered ones. The scattered ones seem to go deeper, or feel like they do anyhow. I may have to call the doctor tomorrow if this doesn't clear up. My throat is getting sore again too. Yuck.
Well, until next time, I hope everyone is well. Take care of yourselves!
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