Im very severe and getting worse please help

[Ladycreole03]

@Ladycreole03

Yeah, this is one terrifying little determined drill-bit of an illness.

Those are classic symptoms, and are best avoided for now. People, even those you love and normally enjoy, are a fierce and deadly drain on limited energy. Noise and light are guaranteed disruptors of fragile neurotransmitters, so darken your room, avoid noise as much as possible.

This will pass, but for now, that's what will work ....

You ABSOLUTELY WILL NOT !!! I promise you. You will get better, it's just not an overnight miracle ....

No. No, it isn't. It just feels like that because you're so badly depleted.

Yes. Me.

When I was at my worst, during a peroid of almost 5 years that I unoriginally vall The Troubles, I was so bad, so suicidal, that my husband DB took his antique gun collection to storage. You know, just in case ....

Because of the severe fatigue and massive flucking anxiety attacks, I had almost zero brai function, but in those rare moments when I could think just a little, I frantically researched, and flogged thru those intentionally opaque research studies. It took a long time, but I gradually put together a plan.

Thye're particularly fond of that diagnois because ots hard to dispute or disprove and there are just MASSES of prescriptn drugs to 'treat' it with, all of which are highly rewarding to the prescribing Drs ..... for now, ignore them ....

If you aren't dealing with GABA/glutamate imbalances, which might be what's producing your anxiety, canned soups can be a great go-to. Some are better than others. Keep track of your anxiety attacks as you trial them, and if it goes up, you probably are dealing with GABA/glutamate issues.

Progressive soups are probably the worst option, they're extremely high in sodium and preservatives.

I'd suggest Annie's Organic Soups. The Chunky Vegetable is particularly good, and good for you. Low in sodiu and fats, and very low in preservatives. Very little chewing involved. They've been my go-to ever since I finally quelled my glutamate issues .... I tart it up with various things that make it taste delicious, and like homemade .....

What helped me, and I think @Mary has posted a link for you in her post above, was magnesium glycinate. I tried numerous other forms of mag with no success, and the mag gly didnt work until I tailored a dosing system that did the job: 50 mgs of mag gly every 30-60 minutes for bout 5 months, after which the anxiety attacks, which were really fierce and lasted as long as 19 hours at a stretch, abating for 1 or 2 hours, and then starting all over again. It as screaming hell, and I thought I was going to die or was actually dying in that moment.

So I hear 'ya ..... been there, done that.

My husband. DB, kept drilling home the rule of the 10%. Dont dismiss the 10% iprovement because it isn't 80 or 100%. Each 10% that I've enjoyed has given me just a lttle more energy, a slightly sharper edge mentally, a little more hope, and that allowed me to do a little more research, til I managed another 10%, making a total of 20% improvement. And then another 10%, etc etc etc.

The short version is that I dragged myself from what I perceived at the time as death's door and a near 5-year bed bound semi-existence to where I am today, which isn't where I want to be forever, but the difference between those two states is absolutely astonomical.

And you can do it. I promise.

There's hope, there's help, there's improvement.

Don't give up, don't give in, don't give out !!!!

I love it! Thank you! I love that logic. I will take all of it. 5% 10%.. All. Were you 100% bedridden before also?
What were your symptoms if you have the energy.

 

[Ladycreole03]

You ABSOLUTELY WILL NOT !!! I promise you. You will get better, it's just not an overnight miracle ....

tenergy.thank you!!

 

[Mary]

Thc so much! How king before you noticed results? Also do you think they help with mental exertion too?

I noticed results within a week. It was completely unexpected. I had had Nutreval testing done which showed low levels of leucine. I'd also read that this was unusual, not a typical deficiency. So I did a little research and found myself reading about something called "central fatigue" and BCAAs and tryptophan. It was all intriguing and I just thought that my low leucine might be significant somehow.

So I started taking BCAAs - I think it was 4000 - 5000 mg a day, and within a week I noticed a difference. I've crashed regularly like clockwork if/when I do more than 3-1/2 - 4 hours a day of light exertion. I'm very fortunate that I'm not bedridden. Anyways, my crashes used to last 2 - 3 days - I'd be bedridden after "overdoing" it. And it was I think about 5 or maybe 6 days after I started the BCAAS that I had crashed, as usual, when I felt the crash lifting late afternoon on the first day that I had crashed, instead of 2-1/2 to 3 days later. I was stunned. This had never happened before (I'd been sick for about 16 years at that time). But my crash was lifting - the achiness was disappearing, I could just feel it.

I've taken BCAAs ever since - that was in 2014 - and my crashes still occur like clockwork unfortunately when I "overdo" it (I put that in quotes because to a normal person it would be beyond absurd!) but I am still recovering generally by the end of the first day when I crash. I won't be without my BCAAs!

I think they have helped me with mental exertion as well. I have primarily noticed that I crashed after physical exertion, I can do more mentally than a lot of people, but one time I really exerted myself a lot while watching a DVD lecture - it was fascinating, but took a lot of brain power and I was crashed the next day. and I recovered the same as if it had been physical exertion.

We're all different - I haven't had all the sensory sensitivity you and many others have - I don't know why. So I have no guarantees, so all I can tell you is what the BCAAs have done for me. Also, I know they have helped several other members here. So they're not too expensive, and I think certainly worth a try!

This thread has links to some articles I found when I was researching BCAAs way back when.

 

[Ladycreole03]

50 mgs of mag gly

great. I have a huge bottle of drs now brand.

 

[Ladycreole03]

I'd suggest Annie's Organic Soups. The Chunky Vegetable is particularly good, and good for you

I love my Annies soups. I was eating her line befire I got sick. Also. Ill tell my hubby only Annies from now on. He gets Progressive if theres no Annies. I love her lentil soup.

 

[Ladycreole03]

frantically researched, and flogged thru those intentionally opaque research studies. It took a long time, but I gradually put together a plan.

Mind sharing when you have the energy. I frantically research too scaring myself with the deaths also.. Im so crazy.. But i research alot in what the processes are possibly and what may help but then i get depreseed again feeling like omg.. Im not going to figure this out. Its so much to try.

 

[Ladycreole03]

Those are classic symptoms, and are best avoided for now. People, even those you love and normally enjoy, are a fierce and deadly drain on limited energy. Noise and light are guaranteed disruptors of fragile neurotransmitters, so darken your room, avoid noise as much as possible

How long did yours last?
I appreciate your breakdown time and energy

 

[Ladycreole03]

Wow! Thx! I will get some. I use to drink them when i worked out. I use to lift weights and they did help with my lactic acid. Thx so much.

 

[Mary]

@Ladycreole03 - one last thing - a couple of years ago I gave the keto diet a try. I lasted less than week. What happened was within about 3 or 4 days I found my energy dropping and I think by the 4th day I was crashing BEFORE reaching my usual 3-1/2 to 4 hours a day limit - my energy envelope was shrinking. This was very scary to me. And it was NOT the keto flu - crashing or PEM is very familiar to me and it it is like nothing else in the world. Also, my recovery time started to get extended - my one-day recovery was no longer, I was going into the second day and maybe even the 3rd, I can't remember. Anyways, I stopped keto immediately when I realized this and also boosted my BCAAs for several days until I got back to my regular 1 day recovery period.

I think the rapid drop in my carbs caused my body to use even more amino acids for fuel, depleting my BCAAsI So I was going back to how I used to be. So if I ever try keto again, I will definitely boost my BCAAs.

 

[PisForPerseverance]

I hear you and I'm so sorry. It sounds horrific and scary. I pushed so much for years too because I didn't understand. Even after I had some diagnoses and healthcare, but before I was diagnosed with ME, I pushed to my limit constantly. Then even after I was diagnosed I pushed because it still wasn't explained to me as the core feature of ME! And definitely I wasn't told that the more pushing the worse I may get. That wasn't until this past year that I learned that. Through the goddamn internet. Like you. Even though I have awesome docs who treat me/cfs now.

The knowledge gap even among doctors who treat it and follow the best treatments, to not even know or think to explain the consequences to their patients, is f***ing insane. So it's systemic. Even if you had some measure of better healthcare it's so rare that you would've been told about / figured out the consequences on your own. It's so painful to realize. I know. The grief of this realization of knowing what may have happened if we'd been educated and helped with just understanding PEM consequences. Awareness and education are growing thank god.

Someone may have mentioned this but have you been getting assistance from city, state, federal, and non profit organizations? Are you in the US? Sounds like you have a good amount of help from your family (?). A caregiver would make an immense difference to your situation, and it sounds like you really need it right now. Have you applied for this yet? It sounds like you're realizing how crucial it is that you reduce exertion as much as possible right now. I am realizing this in a deeper way now too as I go through a significant worsening (but not as severe as you I'm sorry). I'm finding it difficult to grasp it deeper. It feels like it comes in levels of grasping it, and that I have to constantly recommit. I mean years worth of pushing is not so easy to erase. It's also hard to figure it out the limits, the envelope. My understanding from others is that it's a process. What we need is comprehensive guidance easily available to everyone diagnosed. I'm hoping an hrv and hr tracker will help me.

I do believe (and it's easier to grasp when I say this to someone else) that whatever treatment or supplements you do next would have a better chance for improvement the less you're exerting. And that any amount that you can exert less, have less physical stress, less adrenaline, the better you'll be for today and all the tomorrow's. Being in a state of being taken care of more fully by a caregiver might also let your mind rest a little more too. Might turn down the volume just a bit on this totally distressing situation.

Is it childcare that you push yourself for? What do you find yourself pushing yourself for.

There is so much potentially part of state dshs disability programs I'm learning about that you can get assistance for for you and your family. There might be state or non profit childcare programs in the home in your area, maybe part of dshs too. A program for moms who recently had a child and are struggling with health might even be its own separate program because of that need. This website from a person with ME has instructions and tips for so many kinds of assistance. https://howtogeton.wordpress.com/. Today while I'm applying I found out that in my state you can get a caregiver fast tracked while they obtain what they need. If you're already part of a federal disability program getting a caregiver from dshs could also happen right away. If you're not in the US, then I'm sorry, and I can see what resources I can find to help you for where you are. I'm envisioning you getting out of this setback. Oh Jamison hill have you read his blog or his book? He was very severe. I haven't read his book yet.

 

[Ladycreole03]

@Ladycreole03 - one last thing - a couple of years ago I gave the keto diet a try. I lasted less than week. What happened was within about 3 or 4 days I found my energy dropping and I think by the 4th day I was crashing BEFORE reaching my usual 3-1/2 to 4 hours a day limit - my energy envelope was shrinking. This was very scary to me. And it was NOT the keto flu - crashing or PEM is very familiar to me and it it is like nothing else in the world. Also, my recovery time started to get extended - my one-day recovery was no longer, I was going into the second day and maybe even the 3rd, I can't remember. Anyways, I stopped keto immediately when I realized this and also boosted my BCAAs for several days until I got back to my regular 1 day recovery period.

I think the rapid drop in my carbs caused my body to use even more amino acids for fuel, depleting my BCAAsI So I was going back to how I used to be. So if I ever try keto again, I will definitely boost my BCAAs.

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

 

[Ladycreole03]

Is it childcare that you push yourself for? What do you find yourself pushing yourself for.

no, im pushing myself to set things up that ky family may not know to do or research. I was so use to handling everything not expecting to lose functioning like this. Its crazy. Plus im making myself worse by researching to hopefully find something that lessens these symptoms or guve encouraging words because a i think of is how deep im in. Im mainly mentally over exerting. My brain nerves or depleted. I feel it. My facial muscles are weak.
I have had my gp order homecare for me. Thats a fight because its taking two weeks just to get them to remember to put in order. Its ridiculous. I guess i went down so bad because my pregnancy took alot too. Its heartbreaking.

 

[Ladycreole03]

A program for moms who recently had a child and are struggling with health might even be its own separate program. This website from a person with ME has instructions and tips for so many kinds of assistance. https://howtogeton.wordpress.com/. Today while I'm applying I found out that in my state you can get a caregiver fast tracked while they obtain what they need. If you're already part of a federal disability program getting a caregiver from dshs could also happen right away. If you're not in the US, then I'm sorry, and I can see what resources I can find to help you for where you are. I'm envisioning you getting out of this setback. Oh Jamison hill have you read his blog or his book? He was very severe. I haven't read his book yet.

Thx for that link!! Yes im in the US. Im in Texas.
I will definitely look at it. I need all the help i can get. My hubby is such a superman.
I hope you get more improvements! Did your gp help you with disability?

 

[PisForPerseverance]

https://hhs.texas.gov/services/aging/long-term-care/aging-disability-resource-center

what's your insurance like? Do you have Medicaid already? You can qualify for Medicaid for aged, blind, and disabled, even if you have private insurance. If your income is low enough. Looks like your state has 5 Medicaid programs, some may have different income requirements. At least in my state, and this is probably everywhere, a caregiver is part of that kind of Medicaid program. Maybe there's a way to get a caregiver through your state health and human services even if you don't qualify for that medicaid? If not, looks like howtogeton.com has instructions for other ways to get a caregiver.

When you speak to your state aging and disability resource center, ask about getting fast tracked for a caregiver. They may not know or give you the wrong answer so it's your social worker they assign you that does your long term care assessment (if you qualify for Medicaid aged, blind, and disabled?) that could help you most. Definitely tell them about not being able to leave your bed and you need to conduct the assessment by phone and split it up or that they need to be in the dark and very quiet if they come over. In general just tell anyone you speak to from now on that you need to break the conversation into x amount of minutes or shorter because your symptoms get worse from more talking.

If your gp is already ordering you a caregiver then maybe that's all you need to do? I don't know how that works but that would sure be easy

https://hhs.texas.gov/services/disability/long-term-care-people-medical-or-physical-disabilities

https://hhs.texas.gov/services/disa...on-centered-planning-waiver-program-providers

 

[Ladycreole03]

https://hhs.texas.gov/services/aging/long-term-care/aging-disability-resource-center

what's your insurance like? Do you have Medicaid already? You can qualify for Medicaid for aged, blind, and disabled, even if you have private insurance. If your income is low enough. Looks like your state has 5 Medicaid programs, some may have different income requirements. At least in my state, and this is probably everywhere, a caregiver is part of that kind of Medicaid program. Maybe there's a way to get a caregiver through your state health and human services even if you don't qualify for that medicaid? If not, looks like howtogeton.com has instructions for other ways to get a caregiver.

When you speak to your state aging and disability resource center, ask about getting fast tracked for a caregiver. They may not know or give you the wrong answer so it's your social worker they assign you that does your long term care assessment (if you qualify for Medicaid aged, blind, and disabled?) that could help you most. Definitely tell them about not being able to leave your bed and you need to conduct the assessment by phone and split it up or that they need to be in the dark and very quiet if they come over. In general just tell anyone you speak to from now on that you need to break the conversation into x amount of minutes or shorter because your symptoms get worse from more talking.

If your gp is already ordering you a caregiver then maybe that's all you need to do? I don't know how that works but that would sure be easy

https://hhs.texas.gov/services/disability/long-term-care-people-medical-or-physical-disabilities

https://hhs.texas.gov/services/disa...on-centered-planning-waiver-program-providers

Wow.. You're so awesome! Ok i will. I have Medicaid already. And ok. Ill let them know. I didnt think about splitting up. Makes sense!

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

 

[PisForPerseverance]

no, im pushing myself to set things up that ky family may not know to do or research. I was so use to handling everything not expecting to lose functioning like this.

Like what?

I guess i went down so bad because my pregnanc

people without ME also have health problems after pregnancy and there's a lot of things that can happen. I don't know much about it but I bet there is so much you could find out that might be applicable to your situation. Obviously a doctor who could just treat you would be great but it doesn't sound like you have that right now? Have you done a hormone panel since giving birth? I can do some research for you if you want. If you see symptoms or patterns that you identify with then I can help you look for actionable steps, or things you can ask your doctor to test for or prescribe.

 

[Ladycreole03]

Like what?

I had to renew some of my state assistance programs, drs. Appts needed to try and keep searching for ither things, ME specialist searches, just researching different things, bunch of things

 

[Ladycreole03]

Like what?

people without ME also have health problems after pregnancy and there's a lot of things that can happen. I don't know much about it but I bet there is so much you could find out that might be applicable to your situation. Obviously a doctor who could just treat you would be great but it doesn't sound like you have that right now? Have you done a hormone panel since giving birth? I can do some research for you if you want. If you see symptoms or patterns that you identify with then I can help you look for actionable steps, or things you can ask your doctor to test for or prescribe.

An endocrinologist only tested my aldisterone. I cant get her to trst anything else. She said thats not necessary to test my hormones. Im like why? She said there isnt any indications to. I asked my gyn too. She said no also. My orimary is also hard to navigate. These drs are ridiculous. Then the ME specialist are expensive and so far away.

 

[vision blue]

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?

 

[Booble]

@Ladycreole03

Yeah, this is one terrifying little determined drill-bit of an illness.

Those are classic symptoms, and are best avoided for now. People, even those you love and normally enjoy, are a fierce and deadly drain on limited energy. Noise and light are guaranteed disruptors of fragile neurotransmitters, so darken your room, avoid noise as much as possible.

This will pass, but for now, that's what will work ....

You ABSOLUTELY WILL NOT !!! I promise you. You will get better, it's just not an overnight miracle ....

No. No, it isn't. It just feels like that because you're so badly depleted.

Yes. Me.

When I was at my worst, during a peroid of almost 5 years that I unoriginally vall The Troubles, I was so bad, so suicidal, that my husband DB took his antique gun collection to storage. You know, just in case ....

Because of the severe fatigue and massive flucking anxiety attacks, I had almost zero brai function, but in those rare moments when I could think just a little, I frantically researched, and flogged thru those intentionally opaque research studies. It took a long time, but I gradually put together a plan.

Thye're particularly fond of that diagnois because ots hard to dispute or disprove and there are just MASSES of prescriptn drugs to 'treat' it with, all of which are highly rewarding to the prescribing Drs ..... for now, ignore them ....

If you aren't dealing with GABA/glutamate imbalances, which might be what's producing your anxiety, canned soups can be a great go-to. Some are better than others. Keep track of your anxiety attacks as you trial them, and if it goes up, you probably are dealing with GABA/glutamate issues.

Progressive soups are probably the worst option, they're extremely high in sodium and preservatives.

I'd suggest Annie's Organic Soups. The Chunky Vegetable is particularly good, and good for you. Low in sodiu and fats, and very low in preservatives. Very little chewing involved. They've been my go-to ever since I finally quelled my glutamate issues .... I tart it up with various things that make it taste delicious, and like homemade .....

What helped me, and I think @Mary has posted a link for you in her post above, was magnesium glycinate. I tried numerous other forms of mag with no success, and the mag gly didnt work until I tailored a dosing system that did the job: 50 mgs of mag gly every 30-60 minutes for bout 5 months, after which the anxiety attacks, which were really fierce and lasted as long as 19 hours at a stretch, abating for 1 or 2 hours, and then starting all over again. It as screaming hell, and I thought I was going to die or was actually dying in that moment.

So I hear 'ya ..... been there, done that.

My husband. DB, kept drilling home the rule of the 10%. Dont dismiss the 10% iprovement because it isn't 80 or 100%. Each 10% that I've enjoyed has given me just a lttle more energy, a slightly sharper edge mentally, a little more hope, and that allowed me to do a little more research, til I managed another 10%, making a total of 20% improvement. And then another 10%, etc etc etc.

The short version is that I dragged myself from what I perceived at the time as death's door and a near 5-year bed bound semi-existence to where I am today, which isn't where I want to be forever, but the difference between those two states is absolutely astonomical.

And you can do it. I promise.

There's hope, there's help, there's improvement.

Don't give up, don't give in, don't give out !!!!

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