CFIDS or CFS or ME/CFIDS
ADHD, OCD, & PTSD
I'm lumping my mental health diagnoses together because though they are very different, they were all diagnosed around the same time, are my more minor conditions, and are more commonly known.
I've been ADHD my whole life. Just no one put a name to it until college. Not that I'm treated for it. But that doesn't matter much to me, in comparison with everything else. It has never been a hindrance to my schooling so they never noticed it. Same thing goes for me being dyslexic. If you get almost all A's, no one thinks you have dyslexia or ADHD. Sorry to break the mold!
My OCD is technically a pretty mild form, but severe enough that if I told you the more extreme ways it manifests, you'd think I was a total nutter butter. It's highly amusing to me that some of it's symptoms are "okay" or "normal" and some seem truly crazy to most. So I'm not going to tell you. Suffice to say, the diagnosis is definitely real. It's just not so bad that I'm worried if "xyz" isn't just so someone will die or anything. It just irks me to the point I cannot sleep or think of anything else or have mini-panic attacks.
PTSD is far and away the worst of the three, and fluctuates in severity. In my previous post I hinted at some reasons I have PTSD and also said that will not become the focus of my blog. Still true. But it's real, and it used to be A LOT worse. Like constant nightmares and tears from sex kind of bad. I'm a lot better now, but so far my experience suggests you don't ever fully shake it.
TOS (Thoracic Outlet Syndrome)
Below I put some links, again for you to do your own research. The quotes following the links are from the sources.
Let me give you my version of it: Imagine on one side of your body a curved line running from the middle of your neck, down through the middle of your chest, and hitting somewhere at the top of your ribs. So everything from that line outward down through you arm to your fingers hurts, tingles, goes numb, swells, and suffers massive muscle weakness.
This happens. The docs don't like dealing with something they can't fix or change. So they tinker. They want to try new things. Like when they switched me from Valium to Ativan. And it made everything worse. I didn't need they change. It was utterly stupid.
My Spine Stimulation was perhaps the cruelest and most asinine of their tinkering. I was in extreme pain, from the "treatment".
They put a needle in my spine, for the 4the time, only this one didn't have medicine. It had wires, electrodes. The electro-shocked my spinal cord. Apparently in this therapy, you aren't supposed to feel pain because you feel the tingling much stronger. It's ridiculous and awful.
I'm still in therapy. I'm still on my medicines. I will continue trying whatever alternative therapies they toss my way. But you really can't go 27 years living like this and not feel like this PostSecret card sometimes, because the secret is, death isn't scary--living like this forever is...
^Sometimes
it's easier to explain if you do some research on your own, because
this is a wide, all-encompassing disease that is impossible to explain
concisely AND accurately.
CFIDS
has been the most significant diagnosis, both ruling&ruining my
life for more than a decade. Most people know this one by my weak immune
system -- aka if you sneeze around me, I'll be sick for a month. When
looking to diagnose ME/CFIDS (aka CFIDS aka CFS), these are the symptoms
to go with...
Symptoms of CFS are similar to those of the flu and other common
viral infections, and include muscle aches, headache, and extreme
fatigue. However, symptoms of CFS last for 6 months or more.
The
main symptom of CFS is extreme tiredness (fatigue), which is new, lasts
a minimum of 6 months, is not relieved by bed rest, and finally is
severe enough to take you out of your normal activities. (Mine has been over a decade, so...)
That's simply how to get diagnosed. But as time goes on, and you pay closer attention, you find some other symptoms, including:
That's simply how to get diagnosed. But as time goes on, and you pay closer attention, you find some other symptoms, including:
- Feeling extremely tired for more than 24 hours after exercise that would normally be considered easy
- Feeling unrefreshed after sleeping for a proper amount of time
- Forgetfulness
- Concentration problems (brain fog)
- Confusion
- Joint pain but no swelling or redness
- Headaches that differ from those you have had in the past
- Irritability
- Mild fever (101 degrees F or less)
- Muscle aches (myalgias)
- Muscle weakness, all over or multiple locations, not explained by any known disorder
- Sore throat
- Sore throat
- Upset stomach
- Night sweats
I have been so lucky enough, to
have gone through aaaaaaaall these additional symptoms. I often have
them, then forget they are a part of ME/CFIDS, then panic and look up
what new thing I have only to be relieved(?) to know it's just good old
CFIDS.
ADHD, OCD, & PTSD
I'm lumping my mental health diagnoses together because though they are very different, they were all diagnosed around the same time, are my more minor conditions, and are more commonly known.
I've been ADHD my whole life. Just no one put a name to it until college. Not that I'm treated for it. But that doesn't matter much to me, in comparison with everything else. It has never been a hindrance to my schooling so they never noticed it. Same thing goes for me being dyslexic. If you get almost all A's, no one thinks you have dyslexia or ADHD. Sorry to break the mold!
My OCD is technically a pretty mild form, but severe enough that if I told you the more extreme ways it manifests, you'd think I was a total nutter butter. It's highly amusing to me that some of it's symptoms are "okay" or "normal" and some seem truly crazy to most. So I'm not going to tell you. Suffice to say, the diagnosis is definitely real. It's just not so bad that I'm worried if "xyz" isn't just so someone will die or anything. It just irks me to the point I cannot sleep or think of anything else or have mini-panic attacks.
PTSD is far and away the worst of the three, and fluctuates in severity. In my previous post I hinted at some reasons I have PTSD and also said that will not become the focus of my blog. Still true. But it's real, and it used to be A LOT worse. Like constant nightmares and tears from sex kind of bad. I'm a lot better now, but so far my experience suggests you don't ever fully shake it.
TOS (Thoracic Outlet Syndrome)
Below I put some links, again for you to do your own research. The quotes following the links are from the sources.
Let me give you my version of it: Imagine on one side of your body a curved line running from the middle of your neck, down through the middle of your chest, and hitting somewhere at the top of your ribs. So everything from that line outward down through you arm to your fingers hurts, tingles, goes numb, swells, and suffers massive muscle weakness.
Since September 2012 I have felt that pain every single day. This
has continued and endured even through COUNTLESS injections and a
surgery removing a muscle that was supposed to fix it. That's what it's
like to live with anyways. But the somewhat more technical definition
here is that a bundle of nerves is compressed causing this hell.
"Most doctors agree that TOS is caused
by compression of the brachial plexus
or subclavian vessels as they pass through narrow passageways leading
from the base
of the neck to the armpit and arm, but
there is considerable disagreement about its diagnosis and treatment."
"The disorder can sometimes be diagnosed in a physical exam by tenderness
in the supraclavicular
area, weakness and/or a "pins and
needles" feeling when elevating the hands, weakness in the fifth
("little") finger, and
paleness in the palm of one or both
hands when the individual raises them above the shoulders, with the
fingers pointing to
the ceiling."
"Neurogenic TOS has a characteristic sign, called the
Gilliatt-Sumner hand, in which there is severe wasting in the fleshy
base of the thumb.
Other symptoms include paresthesias
(pins and needles sensation or numbness) in the fingers and hand, change
in hand color,
hand coldness, or dull aching pain in
the neck, shoulder, and armpit."
More Technical Info On TOS
Treatment for thoracic outlet syndrome - National Library of Medicine - PubMed Health
CRPS...
More Technical Info On TOS
Treatment for thoracic outlet syndrome - National Library of Medicine - PubMed Health
CRPS...
I can't explain this as well. It's new. It's excruciating. And it's random and cruel. Let's just put it that way, shall we?
http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html
Living with these painful conditions, you can imagine I'm on a lot of medication, right? I've talked about it, so that's not new or exciting. Except that I now have the tolerance of a rhinoceros.
Living with these painful conditions, you can imagine I'm on a lot of medication, right? I've talked about it, so that's not new or exciting. Except that I now have the tolerance of a rhinoceros.
This happens. The docs don't like dealing with something they can't fix or change. So they tinker. They want to try new things. Like when they switched me from Valium to Ativan. And it made everything worse. I didn't need they change. It was utterly stupid.
My Spine Stimulation was perhaps the cruelest and most asinine of their tinkering. I was in extreme pain, from the "treatment".
They put a needle in my spine, for the 4the time, only this one didn't have medicine. It had wires, electrodes. The electro-shocked my spinal cord. Apparently in this therapy, you aren't supposed to feel pain because you feel the tingling much stronger. It's ridiculous and awful.
I'm still in therapy. I'm still on my medicines. I will continue trying whatever alternative therapies they toss my way. But you really can't go 27 years living like this and not feel like this PostSecret card sometimes, because the secret is, death isn't scary--living like this forever is...
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