I don't know what effect lessening your carbs may have had - Interesting question! It may have forced your body into using more amino acids for fuel. There are studies showing that women who have ME/CFS tend to use amino acids for fuel, more than men who have ME/CFS.Thats interesting. I lessened my carbs alot during my fitness journey. I wonder if that contributed to alot?
Yes when I look at my phone too long or talk , I hear my head nerves crackling and my brain feels hot then cold then burney and tight or like a knot. Ten my chest gets weak, my nostrils feel stuffy with no allergies, yes eyes can feel strained til they want to unfocus or double vision very slightky mild.. Now uts moving to my facial musckes being weak not from jaw clenching.. My nise feels heavy, head feeks like i have a helmet on.If the docs dont cooperate on hormone testing, Ive always liked Canary Club and from their list the tests by ZRT. You can also pick to do many by saliva. One that may be useful is to check yoyr cortisol levels; idealy get the 4 times a day.but if thats too much, a morning cortisol may provide info. Eg if your morning cortisol too low that could be one reason your adreniline is high (my adreniline is high but its not my cortisol)
If you havent had autoantibody tests done since pregnancy, those may be worthwhile. ANA and a neural panel of sort offered by MAYO.
Weak facial muscles is interesting. (Atypical and hence a clue) (Unless its from clenching jaw all the time). Your muscle weakness isntbof the sort where first time you can do something but then muscles stop working? Also assuming you dont have double vision.
Another interesting thing you said was that some weird symptons started during pregnancy- say more if u want (ditto the mild state u were in 15 min). Just because you have CFS doesnt meqn youbalso do t have another diagnosable condition contributing
I think is three alternative test would be worth doing. All i believe are covered by medicare- hope you have that too? Oh shoot just realized my fave trst was recently changed by company abd was dreadful last time i tried it. (Doctors data, neurobiogenic amines comphrehensive) not recommending it because of the changes do ibstead go conventional and ask about metenephrines- tho perhaps this woukd just confirm what you already know (still though- want to make sure ykur leveks arent in the 5 times normal range). Plus perhaps urine testing will find is too liw
Ok the other two
DoctorsDara: amino a id urine
Great Plains Lab: organic acid test
Both my spot something big
Stuff to try besides the suggestions others have already given are to tey humming til yku feel it in chest- ieee if activating vagal nerve gives any sympathetic relief. So try inducing yawning jag and see if gives any remief, breathing in 4 count, hold 2 count, out 4 count pause before restarting. Can you do body scan or too revved up for that? Tried powedered amino acids under tongue to see if get a buzz off that? D- ribose?
You had a particular dosage and brand?What my keto experiment showed me was that I still needed the BCAAs several years after starting them - when my BCAAs became depleted on the keto diet (as they apparently did), I went right back to crashing easier and taking longer to recover. Fortunately it didn't take long to remedy this.
I've been taking 4000 - 5000 mg. a day, sometimes going up to 6000 mg - I usually stick around 5000 mg a day, in divided doses - 2500 - 3000 first thing in the morning on an empty stomach and the same again late morning, again on an empty stomach.You had a particular dosage and brand?
Thx! Im sorry you did ell me the brandsI've been taking 4000 - 5000 mg. a day, sometimes going up to 6000 mg - I usually stick around 5000 mg a day, in divided doses - 2500 - 3000 first thing in the morning on an empty stomach and the same again late morning, again on an empty stomach.
I describe the brands I've used here .
@ljimbo423 takes much more than me, I think 10,000 - 13,000 mg a day - but I don't do well at that high of a dose - we're all different!
Can anyone please tell me they know someone similar that at least improved?
To be honest, ive been pushing with adrenaline for two months so it may have developed once i decide to survive this crash if i can like all of you did. Its so scary and uncomfortable. Only pain I do know of now is my brain burns due to me constantly causing Pem researching and looking at my phone. It even burns when i talk or my nerves crackle and my muscles be feeling stiff and i get tingly like feeling. Other than those things no, I dont have any. Now I know icepacks though. Thank you!!You haven't mentioned pain, so I'm assuming you don't have it. A huge plus for you, if that's true
Wow! You're up and about now. I font expect that same result but improvements id love. Please if you have the time can you tell me what were your severely ill symptoms and what symptoms made you bedridden?I was severely ill,
My psychiatrist has me starting diluxitine/cymbalta. I hope it mellos me out. For me, its the just laying there cant talk, look at ohone. Im sound light and motion sensitivite now. Im onlybon because of ny adrenaline.Also, Lady Creole03, do consider whether or not you have anxiety. T
Please if you have the time can you tell me what were your severely ill symptoms and what symptoms made you bedridden?
Also can you tell me your beginning dosages of te supplements and did you wait for rolling pem to stop before starting these?
Not sure if you meant me or @Booble, but either way, you DO NOT suck because you just fall apart from time to time. Or even every day. Or several times a day ....I suck because I sink back into the dark.
That's such good news! I think. Because that might mean that you automatically qualify for the income portion of the Medicaid disabled program. I hope so.I have Medicaid already.
I'm just applying now for state disability assistance (the Medicaid aged, blind, and disabled), but my case worker said they ask for records from my doctor or ask them to fill out a form. I speak to my social worker I'm assigned to next week and I'll see what the process is. I have medical documentation and doctors that treat my conditions so I have what I need. Being deemed disabled by the state is much less thorough and easier than being deemed disabled for federal assistance, at least in my state, and good news is that once you're deemed disabled by the state, it's easier and quicker potentially to get deemed disabled for federal assistance. As soon as I'm finished with that state process, I'll apply for federal. I should've been part of both of them for years (so should all of us who've not had it if we needed it), but didn't know they existed or that they applied to me.This resource.. Could they help me get disability? How did you do it? My dr said i need physical therapy lol
Be very, very careful with Cymbalta, and monitor your reactions as closely as you can. If anything feels.... off ..... call your Dr. The sooner you try to get off it the easier it'll be.My psychiatrist has me starting diluxitine/cymbalta.
In addition to the mental exertion, it could be elements of using the phone. Do you have the settings on your phone to where the blue light is blocked, or the setting where it's mostly dark with light writing? See if that feels different. You could buy a cheap pair of blue light blocking glasses. Like maybe there's ones for 15? Are you using wi fi? Can you use your phones data instead for a day and see if that helps? If it does, and you don't have a phone plan that you could brose everyday with data on, do you have a laptop you can use an Ethernet cord with? That would need to be adjusted for light too. Can you use a computer at all? I get severe symptoms from electronics, and I don't get them when I use this phone without WiFi, but many other phones are an issue even without WiFi. I haven't been able to use a computer in a while since they're often worse than phones in terms of their screen and different outputs, but I haven't tried one with Ethernet. I don't know if these things would still be an issue for me cuz I haven't tried in a while. I keep my location off as well.pain I do know of now is my brain burns due to me constantly causing Pem researching and looking at my phone. I
Not sure if you meant me or @Booble, but either way, you DO NOT suck because you just fall apart from time to time. Or even every day. Or several times a day ....
I'm in the process of doing that right now myself, I can feel it sneaking up on it's little cat's paws. It's unavoidable, and after a certain point, not something that you can postpone or work around.
Cheer up !!!! You're doing what you need to do. We've all been there. And back. And then OK. And then back. And then OK. And then back ...... etc etc etc .....
But each time, it's not quite as bad as the last ....
It gets easier to deal with as time and repetition acclimate you. It isnt exactly a carnival ride, but it is what it is and there are worse things ....