Im very severe and getting worse please help

[YippeeKi YOW !!]

I wish there was a LOVE button on these posts so that I could love this one.

...

 

[YippeeKi YOW !!]

@Booble

For what it's worth, your post WAS a love button, and you lifted my spirits ...

 

[Mary]

Thats interesting. I lessened my carbs alot during my fitness journey. I wonder if that contributed to alot?

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.

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.

 

[Ladycreole03]

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?

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.

So sorry about these typos.. This phone sucks.
Ive had ANA many times.. Negative.. When I hd ny endoscopy and after my spinal block.. I did have double vision until anesthesia wore off. Drs didnt know why.

 

[Ladycreole03]

@Booble

For what it's worth, your post WAS a love button, and you lifted my spirits ...

You're awesome! I suck because I sink back into the dark.

 

[Ladycreole03]

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.

You had a particular dosage and brand?

 

[Mary]

You had a particular dosage and brand?

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.

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!

 

[Ladycreole03]

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.

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!

Thx! Im sorry you did ell me the brands

 

[lenora]

Do you have a bladder infection?

Also, Lady Creole03, do consider whether or not you have anxiety. This may be making everything worse for you to deal with. Nothing says "anxiety" exactly, but do be aware. It's not a failing, it's a real thing and can be overcome with help, and a non-addicting medication. It helped me immensely...no, it didn't take the illness away, but made it easier to cope with. I did try other products first before I went to second/third base.

You haven't mentioned pain, so I'm assuming you don't have it. A huge plus for you, if that's true. If you are experiencing it, ice packs will help, especially those made by Ace (blue fabric) and you can buy them in the size you need. I'll go for long periods now without mine, but boy, when I need it nothing else beats the overwhelming feeling of numbness and control ice (doesn't freeze solid) can bring. Be peaceful....and rest easy. Yours, Lenora.

 

[Mary]

Thx! Im sorry you did ell me the brands

No worries!

 

[ljimbo423]

Can anyone please tell me they know someone similar that at least improved?

I was severely ill, mostly bedridden, with ME/CFS for several years. I slowly turned it around by not eating sugar, taking supplements to improve my energy, like coq10, carnitine, vitamin B-1, creatine, etc. Then I started very slowly treating gut dysbiosis and leaky gut.

I did these things VERY slowly because just reducing how much sugar I ate in a day, made me feel horible. I was and still am VERY sensitive to any changes in supplements or diet. So I make changes very, very slowly.

Today I do several hours of physical activity most days. Very rarely take naps, never spend any time in bed, other than to sleep and only sleep 8-8.5 hours a night.

EDIT- I forgot to say how much BCAA's have helped. They give me a significant boost in energy and I take 13 grams every day. Thanks for the tag @Mary !

 

[Ladycreole03]

You haven't mentioned pain, so I'm assuming you don't have it. A huge plus for you, if that's true

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!!

 

[Ladycreole03]

I was severely ill,

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?
Also can you tell me your beginning dosages of te supplements and did you wait for rolling pem to stop before starting these?
Sorry all these questions. Im a mess and my body is so ill. Im about to lose it.

 

[Ladycreole03]

Also, Lady Creole03, do consider whether or not you have anxiety. T

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.

 

[ljimbo423]

Please if you have the time can you tell me what were your severely ill symptoms and what symptoms made you bedridden?

My symptoms were severe fatigue, (when in flares, which were often, sometimes I would lay in bed and wonder if or when I'd be able to get up and get something to eat or if I'd have to go days without eating!). The severe fatigue is what made me bedridden, the most.

My whole body ached like a toothache, had severe brain fog and an inability to focus or concentrate, severe anxiety, and constantly feeling like a had a cold or a flu.

Also can you tell me your beginning dosages of te supplements and did you wait for rolling pem to stop before starting these?

I can't remember what my starting doses were, it was a long time ago now. What I did was to start with VERY low doses and see how my body reacted. Then I would adjust the dose up or down depending on how I reacted.

I also can't remember if I was in PEM when I started to make changes. I would say trust your intuition and your experience with taking new supplements.

 

[YippeeKi YOW !!]

I suck because I sink back into the dark.

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 ....

 

[PisForPerseverance]

I have Medicaid already.

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.

The first thing at this point might be to find out where your doctor is ordering a caregiver from. If it's health and human services where Medicaid is operated out of, I'd call the long term care number on the health and human services website and ask if your doctor can just order it or whether you need to apply if you're already on medicaid. And whether you'd need to be deemed disabled before getting a caregiver. If you need to apply, they'll probably give you a website to fill out an application on. If you also first need to be deemed disabled to get one, then I'd say I need someone now as my functioning worsens and I am barely able to move without assistance, can I get a caregiver fast tracked now while my case is being reviewed? In my state what that means is that even if they end up denying deeming you disabled, you don't have to pay back the time a caregiver was with you. If they deny, it's a matter of your doctor not giving sufficient diagnosis or correctly documenting your function, and then you can find out exactly what was wrong and ask your doctor to do whatever is needed or find another doctor. You can also get free legal aid for an appeal.

They'd need to do an assrssment with you to find out how many caregiver hours you'd need. That's a conversation where they ask you many questions about your needs. That's the one that might be in person unless you request otherwise. I'd say can I do that assessment with a social worker right away? Because of how your functioning is. Otherwise it might take them some days to assign you one.

Then I'd still speak to the aging and disability resource center to learn more about what's available to you beyond a caregiver. And many more things would potentially be available automatically after being deemed disabled with health and human services. I would try to conserve your voice as much you can. If your husband can make the initial calls to find out first steps, that would be great. I would definitely let your case worker and then later your social worker know that you need to do the assessment in a way that you can. That might mean sending you questions to answer in a written format and later them reading off your answers to you and you only speaking to stop them if they got something wrong or to clarify. Try to be clear that you can only talk sometimes and in small amounts.

You could see what else howtogeton.com has for how else to get a caregiver because there may be other options to get one right away if health and human services can't get you one fast tracked. https://howtogeton.wordpress.com/how-to-get-a-caregiver/

The Self-Advocate’s Guide to Disability Home Aides/

This resource.. Could they help me get disability? How did you do it? My dr said i need physical therapy lol

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.

Everything I'm learning is from howtogeton. It's written simply and I think it's a good place to start for understanding the federal disability assistance process. There's so many tips. Here's also a guide from the American ME and CFS Society https://ammes.org/work-and-disability/. And I'm attaching a disability handbook for those with ME put together by the Massachusetts me/cfs and fm association. Take it in in sips... That's what I'm doing. I would ask your husband to read through them in sips on his own time too. First focus on all the assistance from state and local programs to improve your quality of life as soon as possible. Leave the federal program for later, unless your family really needs that extra cash soon. In which case you may be able to get backpay from the time you apply once you get approved. When you do apply, ask for whatever you need from your local social security office and from your family to make the process work for you right now and as least exerting as possible. Are there others besides your husband that can help you go through these guides and talk to doctors and your social security case worker when you decide to apply?

Are you saying physical therapy is the only thing he's been wanting to treat you with? I'll look at your intro post to see your doctor situation.

How to Get Diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome/

How To Save Spoons: A Self-Advocacy Guide for ME/CFS

Testing and treatment
https://mecfsroadmap.altervista.org/

Treatment Overview: a dose of "don't give up, you can improve"

 

[YippeeKi YOW !!]

My psychiatrist has me starting diluxitine/cymbalta.

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.

Among other side effects, and there's quite a few of them, Cymbalta is an anticholinergic and can cause fogginess, memory impedance, unsteadiness and dizziness, along with nausea, vomiting, loss of appetite, irritated bowel and frequent bathroom runs, easy bruising, muscle cramps, headaches, and bad fatigue.

The possible side effects are worse the older you are. Most Drs wont prescribe Cymbalta to anyone over 50 or 60 ....

Your Dr will, if forced to admit it, agree that its an anticholinergic, but will say that it's extremely mild and much better than the other options.

That may well be true for some people and for you as well, but none the less, watch your reactions to it, and ask your Dr if you can start at the absolutely lowest possible dose.

Not everyone reacts badly, but the reports have been enough to suggest watchful caution would be indicated.

It's also a mother to cycle off of, which is why the sooner, the better.

I dont mean to be a downer, but I've learned that Drs with minimal to little knowledge of how the brain works, and even less about what these psycho-actives do to brain and CNS function, tend to prescribe these far to casually, and to take the word of those attractive ladies in the black suits with the short skirts and the wheeled suitcases filled with samples far too uncritically.

Just be aware, alert, and critical of how your functioning and feeling when you take it, yes? And don't accept the "....you have to give it at least 6 wees to settle in...." line if your sense is that you're not doing well. Or s well as you'd like .....

PS .... As far as treatment options and protocols, if you go back to your introduction page, I'm pretty sure that @andyguitar posted a comprehensive and incrdibly helpful compendium of everything you ned to know about treatments, how to deal with your Drs, medications, etc etc, put together for our community by the remarkable and deeply well-informed @Pat .... give it a look. All the information there is accurate, up to date, and extremely helpful ....

 

[PisForPerseverance]

pain I do know of now is my brain burns due to me constantly causing Pem researching and looking at my phone. I

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.

 

[Booble]

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 ....

That's really true.
The older you get the more you have the opportunity to reflect back on the past and remind yourself you felt exactly like that in the past.
It's funny (not funny) how when you're in the middle of it you can't imagine that you'll ever feel better.
I remember when I couldn't eat for weeks on end. I managed to force down about 250 - 300 calories a day. The longer it went on I thought, "how am I ever going to want to eat again?"
But somehow, someway it did end and I eventually got back to my normal being excited to eat food. I honestly couldn't imagine that I would ever enjoy eating again at the time.