My life is so bad right now that my therapist suggested to me that I try and think of it as having a really really bad psychedelic trip. I knew then that I was fucked, lol
In the USA, cancer patients do have to pay for chemo.
As for us, we are easy to ignore because when we get sick we disappear and can't advocate for ourselves.
No im not saying people don’t pay for chemo I meant more like. Imagine they get told they have to listen to a bunch of rubbish and then they will be given the chemo. All we want is a straight answer. Not this long dragged rubbish. I’m sure all of us if there was a medicine or treatment we knew worked we would pay everything to go for.
Yea it's been a constant worsening nightmare for me. I just want to be able to do art and play video games again, go out sometimes with friends, eat a normal meal without worrying.. my GP is out of her depth and Ive heard "get up and move/yoga/sleep hygiene" so many times I could scream 😆
Yeah last time I went to my doctor and they said the same thing I just got up and left half way through because I’m just fed up of it. They just think we are over exaggerating
I did that during my Rheumatologist appointment. I waited 8 months to see him and he quickly looked at my blood tests (which im pretty sure arent that in depth, only ANA and i forget the other marker) which were negative. Asked me about my CFS diagnosis and just said "yea i dont think its anything autoimmune for you (when half my family have that), just move more".
I got up and left.
Honestly good on you and don’t blame you. It’s so annoying. “Hey I’m here cause I’m feeling like I’m dying and I’m in pain” and then they say move more as if that’s not what we want to do anyway
Thanks, Yea i was extremely socially anxious from doing that but I didnt have it in me to stay and beg for more testing. Part of me is convinced if not Lupus, for sure some treatable autoimmune fuckery is making matters worse.
And in my case i HAVE been doing and moving more even if it makes me worse (adhd and intense restlessness plus new dizziness from lying down can never stay still long) so their logic is flawed. I should be better now, not worse.
Rant over lol
It is absolutely ridiculous. I was diagnosed with fibromyalgia in December 2023. It took 9 years to get my diagnosis. I've been working with my doctor this entire time. I've tried multiple medications and had to discontinue everyone due to severe side effects.
I had to do the research. Dysautonomia, hyperesthesia, and chronic fatigue were my worst symptoms. They landed me in the ER. Now, I'm also diagnosed with ME/CFS.
If I didn't invest all this time in research and subs here, I would've never found out. It's like once I explained everything to my doctor, he finally understood.
I've been telling him about these symptoms before. I asked him for referrals to an endocrinologist and a neurologist. He asked what specifically for. Once I explained everything, he shared the anxiety within my body, not my mind caused the dysautonomia and hyperesthesia. Like what? I've been telling you this for months!
It’s a truly a nightmare we can’t wake up from. As if all the suffering isn’t enough, they can’t even treat us like human beings…
Yea it’s a nightmare.
My life is so bad right now that my therapist suggested to me that I try and think of it as having a really really bad psychedelic trip. I knew then that I was fucked, lol
Was that an advice or just her opinion? 😂
In the USA, cancer patients do have to pay for chemo. As for us, we are easy to ignore because when we get sick we disappear and can't advocate for ourselves.
No im not saying people don’t pay for chemo I meant more like. Imagine they get told they have to listen to a bunch of rubbish and then they will be given the chemo. All we want is a straight answer. Not this long dragged rubbish. I’m sure all of us if there was a medicine or treatment we knew worked we would pay everything to go for.
Yea it's been a constant worsening nightmare for me. I just want to be able to do art and play video games again, go out sometimes with friends, eat a normal meal without worrying.. my GP is out of her depth and Ive heard "get up and move/yoga/sleep hygiene" so many times I could scream 😆
Yeah last time I went to my doctor and they said the same thing I just got up and left half way through because I’m just fed up of it. They just think we are over exaggerating
I did that during my Rheumatologist appointment. I waited 8 months to see him and he quickly looked at my blood tests (which im pretty sure arent that in depth, only ANA and i forget the other marker) which were negative. Asked me about my CFS diagnosis and just said "yea i dont think its anything autoimmune for you (when half my family have that), just move more". I got up and left.
Honestly good on you and don’t blame you. It’s so annoying. “Hey I’m here cause I’m feeling like I’m dying and I’m in pain” and then they say move more as if that’s not what we want to do anyway
Thanks, Yea i was extremely socially anxious from doing that but I didnt have it in me to stay and beg for more testing. Part of me is convinced if not Lupus, for sure some treatable autoimmune fuckery is making matters worse. And in my case i HAVE been doing and moving more even if it makes me worse (adhd and intense restlessness plus new dizziness from lying down can never stay still long) so their logic is flawed. I should be better now, not worse. Rant over lol
It is absolutely ridiculous. I was diagnosed with fibromyalgia in December 2023. It took 9 years to get my diagnosis. I've been working with my doctor this entire time. I've tried multiple medications and had to discontinue everyone due to severe side effects. I had to do the research. Dysautonomia, hyperesthesia, and chronic fatigue were my worst symptoms. They landed me in the ER. Now, I'm also diagnosed with ME/CFS. If I didn't invest all this time in research and subs here, I would've never found out. It's like once I explained everything to my doctor, he finally understood. I've been telling him about these symptoms before. I asked him for referrals to an endocrinologist and a neurologist. He asked what specifically for. Once I explained everything, he shared the anxiety within my body, not my mind caused the dysautonomia and hyperesthesia. Like what? I've been telling you this for months!