I will have to talk to my VA Neurologist about this. I've been suffering this for 2-3 years now and it SUCKS! The worst part is not just trying to explain to others that I'm not lazy, it's believing it myself!
@ankitasahoo6524
6 ай бұрын
It’s one of the worst things and people think you’re making excuses because physically you seem fit even though you’re badly fatigued all the time. How do you feel when you get up in the morning?
@hermansims2296
6 ай бұрын
@ankitasahoo6524 usually, fatigued. Makes it hard to get about and do anything. I'll have a cup of coffee and toast in the morning and I'll be nodding off like I've never slept.
@ChrisKadaver
6 ай бұрын
I was able to erradicate my hyperadregenergic POTS and get my blood pressure back to normal with roughly 5mg of folinic acid. My chronically burning tongue stopped burning also. I have had ME since 2016. Back in 2021 everything went from bad to worse and I have also had relapses of acute worsening of symptoms that doesn't correlate with the classic ME symptoms I had prior to this onset. I had something similar to cauda equina syndrome, started seeing rainbow halos around light sources, also flickering vision, memory loss, confusion etc. I'm not sure if it had to do that I had lyme back in 2020, or an infected wisdom tooth a few weeks prior. I also had yellow stool that persisted for months. Nystagmus during the acute phase for a while. Then whatever it was, it went into remission after a couple of weeks. It left me with idiopatic polyneuropathy. Stopped sweating. Pretty severe erectile dysfunction. Chronic hip and lowe back pain. The halos persisted. A worsening of visual snow as well as a worsening of the tinnitus I had aaaand I stated develop a round spot on my nose filled with telangiectasia. I also developed severe diastolic hypertension that worsened upon standing as well as persistent heart palpitations that lasted until I realized I don't tolerate histamin foods. So I had that for more than two years. My ME specialist suspected B12 deficiency and put me on mekobalamin injections werkly without had me tested for B12 deficiency and without adressing folate at all. It was until I recently learned more about B12 deficiency I mamaged to treat both conditions. Anyways... I was stable from early 2022 until october 2023. The B12 injections helped a little I guess. But in october I had an onset with the exact progression of symptoms I had in 2021. And still no answers. My new symptoms doesn't remind of any of my regular ME symptoms but my GP seem to have given up on me. Now my RGB halos almost takes up my whole field of view. Prior mainly saw them in dark enviroments. Now I see them in good light conditions. The eye doctor can't see any abnormalities so my guess is that I for some reason have intercranial hypertension. Maybe to an unstable cervical spine or something. The spot on the nose increased in size and became twice as big this time. The dermatologist said "maybe rosacea" but at the same time it doesn't corralate with my other symptoms. Also the spot has a distinctive outline and the area isn't red or anything. It's rather pale except the telangiectasia. I think I need to go see him once more. Anyway... With ME it's not unlikely to develop other shitty conditions it seems. I think reserchers should have a more functional doctors approach and do like OATS testing, amino acid testing, genetic testing etc. But it's cheaper to just set the diagnosis without trying everything and then deny you further testing and blame everything on ME. Something is most likely fucked up with the methylation. Many claim to have recovered after treating SIBO and maybe a systemic candida infection etc. Things your GP will never have you tested for.
@famousutopias
29 күн бұрын
“You’re just depressed.” I don’t know where to start with that kind of statement. As if to say depression isn’t real either. The depressed have to endure those kinds of judgmental statements too. I’d hate to think the ME/CFS community condones those statements in regard to depression because I see it across many videos, the implication being something like “I’m not depressed, I’m actually sick.” With a foot in both worlds I can say for certain once one has a diagnosis of major depression it’s impossible to get any MD to accept that ME/CFS is also a compounding condition even when the symptoms are definitely there. Regardless, being dismissed as lazy when we are struggling every day is a gross injustice. The only thing worse is “you must want to feel this way.” Arrrg!
@lucidmed3343
29 күн бұрын
Hi famousutopias! Thanks for commenting and I agree with everything you've said. It's so misunderstood and you make a great point about "depression not being real" and having a foot in both worlds. I didn't consider that when I made the video. Thank you for sharing this with us. Danielle
@kavitadeva
6 ай бұрын
Hi Danielle I just finally got to watching this, I am writing at the beginning. Do you mind if at the end I leave thoughts and feelings? Thanks for putting this out there ❤ hi there. I just watched the entire video. I liked your style very much. The HUGE missing piece I felt was the agonizing PAIN Manny ME/CFS people experience. Believe me when I say that is so common. Neuropathy in my hands keeps me at wanting to end it all every night. Also complex PTSD is a part of why it may show up. Trauma sufferers seem to get it as well. Keep up your good work❤
@lucidmed3343
6 ай бұрын
Hi Kavita! Of course not. This is an open forum for you to comment as you please. Always value feedback, opinions, corrections...have at it :) D
@kelleemerson9510
6 ай бұрын
My question is have the oxygen levels of these people been checked. I'd never heard of testing for this before covid and was the reason I was told to go to the hospital when I had delta. I had the pneumonia, but I never felt like I couldn't breathe. What I felt like is that I gained 100lb in two days and couldn't move to even go pee. I also realized one time many years ago, low oxygen from a heater was depressing me when I couldn't light a match in the room. As a caution, in my bedroom I have a cracked window and many plants. Helpful, if not a fix. I had Lyme's, but thought I recovered fully. I wonder if something lies dormant until there's a trigger?
@glendapolich7549
15 күн бұрын
A neurological disorder...makes life so hard ..B comples, orher b vitimins, magnesium, D3. K2, zinc, curcumin all help. 😊
@monicaz4949
6 ай бұрын
Some people have gradual onset
@abdimohamud4604
4 ай бұрын
I don’t have happiness in this life ?
@kimgysen10
5 ай бұрын
I wonder what experimentation with mdma / xtc would do albeit not permanent.
@lucidmed3343
5 ай бұрын
Hi kimgysen! Very good question. This is a topic I plan on researching as well. Danielle
@MarcBraun-tb3vu
11 күн бұрын
6 weeks of having to work in Mexico with infested food and water ( 5 weeks of diarrhea) that destroyed a once good digestion, followed by neck ligament injury and development of a hiatal hernia did it for me. After leaving Mexico things just downspiraled over the course of 3 months until I was bedridden
@ahmedalhsnawe8986
4 ай бұрын
صور داخل الدماغ الورده والشرايين تكون مسدوده مما ادى الى هاذا المرض
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