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Disabled fantasy: Being able to sit in the room with all the doctors who ever asked if you were maybe just making your symptoms up…while they experience your symptoms. And ask them if they’re making them up
And then prescribe them “severe anxiety—second opinion and treatment”
Happy Lemon Cake day! :)
Thanks!!!
But the day you find a specialist that immediately gets you is glorious, just hope there is medication/treatment for it tho.
As someone with chronic fatigue due to long covid i can relate to this hard. I only had to wait 2 years to start with some experimental meds tho so not all is bad.
There’s experimental meds for fatigue due to long covid? Would you feel comfortable sharing wahr this medication is? I sincerely hope that those meds work for u!!! Fatigue is… tiring (ba-dumz). But honestly, I think fatigue is such an underrated symptom that so many people don’t understand…
The experimental meds are basically anything they gave someone for another reason which also seemed to have a positive effect on their daily energy levels.
So far I’ve tried: low dose naltrexon, mestinon and low dose aripiprazole. The first two had only negative effects while the last gives me a few more hours that I’m awake per day. From sleeping 20 hours in the worst case to about 12-16, I still can’t do shit but at least I’m awake.
Thank you very much! Glad to hear that one of them could give you at least some relief, hope that your baseline improves further and that you got something nice to spend your time awake
Chronic Fatigue ≠ ME/CFS [Hallmark symptom of ME/CFS is PEM]
So sorry to hear you got post-COVID tho. Hope your baseline improves.
Thanks, I’ve only known about the chronic fatigue part of ME since the trial I’m involved in also has some ME patients trialing the same meds.
Edit: reading again i think their was a small miscommunication, I don’t have MECFS, just something with similar symptoms so I know the feeling.
Yeah I mean…fatigue sucks. Like, as a symptom caused by the flu or sth. Chronic fatigue has to suck even more, like any acute illness that becomes chronic. And I yes, there is Post Covid type ME/CFS than also goes along with chronic fatigue as well as PME (and other debilitating symptoms such as severe pain etc.,). So not just PME. At least this is the way our specialist frames it/ named it. But maybe there is a translation issue/ language barrier, no native speaker here. Luckily I am just blessed with some rather annoying but mostly livable chronic diseases…but it hit my significant other, so that’s why I asked in the first place about the medication, hoping for some hints about possible options…thank you for your well wishing :-)
I might want to add, "hope that your baseline improves " is a very good way of expressing well wishes to someone where you know that “get well soon” is just not the right way for someone with a chronic disease that doesn’t get much or any better soon!!! Love it, will steal this ^^
This just happened to me and a single diagnostic was all it took to rip her away from me because I was no longer in her wheelhouse. :(
Yeah I can see my wife feeling like this. Or wanting me to feel it. Its funny because if she just had to deal with one. One symptom. It would not be so bad. Maybe even a few. Its all of them combined that it really gets tough especially since each doctor is like. No. We deal with this one in isolation and we need a separate appointment for others or you have to go to another specialist.
This is where I’m at. Getting assaulted on multiple fronts. Multiple different things. Multiple different specialists, some you have to wait months and months to see. Scans. Appointments. Needles. And I’m not even that old. I’m kind of over this whole living thing at this point.
Currently on year 5 of a chronic injury that doctors have basically given up on and sent me to physical therapy for. I’m a year into that with little to no results. Eventually they’ll give up on that and send me to a specialist that shoves a very large needle deep into me every 2-3 months to inject numbing agent to just permanently numb it for the rest of my life.
I can’t tell you how many times I’ve imagined temporarily transferring the pain to the doctors or my friends/family so they can just fucking understand. Or how many times I’ve considered blowing my brains out.
Enjoy your body while it’s young, folks. You’ll come to hate it eventually.
It’s not naturally like this. Has little to do with age itself.
Have you looked into EDS? Because I have EDS and that sounds just like me.
Yup, when I asked my doctor about my neuropathy (or fibromyalgia but he says fibromyalgia does not exist) and what it means he said “nerve pain”. I asked about both and what they are caused by. His reply was really have no idea but so many people have it we have given it these names to shut them up. Even had one brianlet doctor say well you know your pain is all in your head. Um, what the hell?
They have no fucking clue on a real treatment. They prescribe anticonvulsants, antidepressants, and topical pain relievers like shit against the wall to see if it sticks. I am still suffering side effects from those drugs to this day and they provided zero relief. I even had 12 needles in my back once a week for 6 months. I replaced that with Baclofen once or twice a week.
The only thing that works for me is opiates which I do not particularly like (I have no addiction issues, guess I am like Larry Flint) and they have such a stigma attached to them that it sucks. Damn ignorant druggists adding naloxone to my prescriptions even though my history shows I have been using it safely off and on for almost 10 years now or other doctors screaming it’s addictive etc etc.
Read the room Mr. Doctor I have a medical issue of which you have no idea how to treat and I am almost 70 yrs old who can’t walk more than 2 metres. I am no longer in the work force. Why would it matter even if I even did have a severe addiction, not like I am going run out and start breaking into houses or head back for the work force. If I did not have them I would not be able to walk at all.
Having them empathize is non existent these days
If it’s any comfort reading about you getting meds but only suffering side-effects, gave me some comfort in that I can’t even get an appointment. Like I might not get any help, but at least I don’t get meds that make it worse.
Also I completely agree with you on what dose it matter if it is addictive. My grandmother got a medicine that worked grate on her dementia, but the next doctor (they hospital hade like short hired doctors on rotation) took it away because it is really addictive. She never got a medicine that worked well after that, had she stayed on the addictive one she most likely would have gotten 5-10 good years more, but you know addiction.
Thanks. Glad no naughty side effects for you. They are not fun.
It was the beginning of my pain odyssey and was ignorant. I took what they gave me and I systematically ended them all and then settled into my own regime. I am beyond lucky, I got in with this doctor 15yrs ago before things got really bad getting a good doctor. Hopefully he outlives me ;-)
I feel for you about your grandmother. I watched my mom languish for 5 years in a home asking for them to end her. This was before MAID (Medical Assistance in Dying) was available. Our pets are treated with more dignity. I know when it starts getting worse with me I am not going to languish.
Oh, the doctors would immediately prescribe themselves vicodin.
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