Health Update

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Health Update

Post by Claincy » Wed Jan 17, 2018 11:05 pm

Me having health issues is certainly nothing new and I've talked about it a little before, but I've been present but largely inactive and decidedly flaky about posting for, well, quite a while. And I felt I'd post an explanation of where I'm at and why I've been so disconnected. If you don't want to know about various health rubbish, don't read it :D

At this point we are reasonably certain that I have some form of chronic fatigue syndrome or fibromyalgia. That appears to be stacking on top of chronic sinus issues and potentially something else as well, it's hard to tell.

Whatever the causes may be the most substantial effect is that I have a single severe headache that's been going on for over 4 and a half years. It has varied somewhat in severity during that time, though it's never gone away entirely. It went from being not *too* bad to really not great midwayish through 2016. Then got significantly worse around March 2017....then got significantly worse around August 2017...then got worse around November 2017...and it's pretty much stayed static since then. So for the past couple of months especially it's been really particularly painful (moreso than at any other time in the past few years I think).

In addition to that:
-post-exertion malaise
-pain in neck, shoulder, arms, wrists, legs, ankles etc at very light provocation or with no apparent cause. (Though not nearly as severe as the headache.)
-difficult to remain standing for any extended length of time

Add a little bit of sensitivity to sensory overload and that when I'm struggling to keep control of the pain most sounds or other sensory input registers as pain :D It all makes for a fun time.

The net effect is a very difficult time accomplishing anything.

I'm still actively seeking things that will help but so far nothing has made a noticeable impact. And no pain killers I've had so far have had any noticeable impact on the headache.

With all that said I'm doing "ok" mentally. I'm not having a problem with depression or anything at the moment :) I feel blessed in numerous ways, including in the people I know/interact with online and in person, the work I have/had, etc. But I am sorry I haven't managed to post more reliably.
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Re: Health Update

Post by Herowannabe » Thu Jan 18, 2018 1:01 am

I was already aware of most of this from our PMs, but still, that’s rough. I’m glad to hear that you’re hanging in there and are in good spirits. Don’t worry about your ability to post consistently, I certainly don’t have any right to blame anyone for not keeping up a frequent stream of posts. :roll: I hope things start improving soon, and I will continue to keep you in my prayers. Hang in there my friend, this won’t last forever. :)
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Re: Health Update

Post by Kurkistan » Thu Jan 18, 2018 11:20 am

I appreciate you taking the time to tell us about all this, sorry about all the troubles you're having. :(

I had some medical shit myself back in 2015/2016, and was a bit cowardly about telling people online about it. Nothing as bad as what Claincy's dealing with, but it's never fun when you have to ask "and what's the chance that this kills me?" when discussing treatment options. I'm all sorted now, I just wanted to use it as an example to say that it takes bravery to open up like Claincy has.
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Re: Health Update

Post by jeremyguebert » Thu Jan 18, 2018 2:09 pm

Dude. You are such a trooper. After hearing more about your specific health issues, I am even more grateful for the time you do get to spend online. I am very glad that you are at least in a good place mentally, and I am hoping and praying that your health shapes up in the near future.
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Re: Health Update

Post by Zath » Fri Feb 16, 2018 7:52 pm

Hey Claincy, I just joined the forum, and Hero told me you're fighting FM/CFS and pointed me here, and I thought I'd say hi, 'cause I also have CFS. I fortunately don't have the fibromyalgia stuff, headaches and pain, but I do experience the fatigue, post-exertional malaise, POTS/orthostatic intolerance, and sensory overload, and I also know how it feels to spend a long time in poor health. So I can begin to understand what you're going through.

I'm not sure if you know this already, but research into fibromyalgia and chronic fatigue syndrome has really picked up in the US and worldwide in the past few years, thanks to more funding and better-informed researchers. I've participated in a number of studies myself. So the good news is that a lot of talented doctors/scientists are working on a cure. Less-good news is that it'll probably be a long while before a cure is actually available.
I guess what I'm saying is that there's hope on the horizon, so let's both hang in there! :)
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