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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Can't control malaise

Messages
9
I can't even get to where I can function and fully take care of myself. Does anybody have any ideas? I'm lost. Also kinda venting.

Tried prescribed modafinil, amphetamine, LDN, many forms of glutathione, all the mthfr stuff, my doc put me on low dose anabolic steroids, high dose T3 thyroid, mitocore, cox-2 inhibitors, injected b12 twice a week, got ketamine (calms down microglia, etc) injections from my doctor, all the EPA/DHA fatty acids, kratom, caffeine, TMS, tDCS, exercise, cutting out dairy and gluten, adrenal fatigue treatment. Also tried a lot of alternative medicine with multiple naturalpathic doctors. I've gotten nowhere.

I was studying cell and molecular biology in University before I had to give up. Then become obsessive about trying to fix it and used some of what I learned, mainly to seek out specialist and get new novel treatments. Insurance covered but probably spent $100k on medical. Nothing. Years. Its so bad I cant read more then 3 or 4 pages of a book or even do basic stuff except listening to music. Really hard to shower, etc. Its scary. The only thing I can think of is get a sleep study and I doubt it would help. Based on your experience what am I missing? Its so intense I don't want to be alive. Its like im drugged 24/7 and its really, really painful. Housebound etc. What do I do? What has helped you?
 

Judee

Psalm 46:1-3
Messages
4,544
Location
Great Lakes
Some are getting some help with LDA (Low dose Abilify). There is a Facebook group. Tolerance can develop though but I thought I would at least mention it to you as some on FB haven't developed tolerance even after more than a year.

I am not on it but you can do a PR search for some of the threads where it was discussed here or try FB if it's not too much of a sensory overload for you.

Anyways, please don't lose hope. The covid situation has put more light on our disease too.
 
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Sidney

Senior Member
Messages
146
Location
East Sussex, U.K.
I can't even get to where I can function and fully take care of myself. Does anybody have any ideas? I'm lost. Also kinda venting.

Tried prescribed modafinil, amphetamine, LDN, many forms of glutathione, all the mthfr stuff, my doc put me on low dose anabolic steroids, high dose T3 thyroid, mitocore, cox-2 inhibitors, injected b12 twice a week, got ketamine (calms down microglia, etc) injections from my doctor, all the EPA/DHA fatty acids, kratom, caffeine, TMS, tDCS, exercise, cutting out dairy and gluten, adrenal fatigue treatment. Also tried a lot of alternative medicine with multiple naturalpathic doctors. I've gotten nowhere.

I was studying cell and molecular biology in University before I had to give up. Then become obsessive about trying to fix it and used some of what I learned, mainly to seek out specialist and get new novel treatments. Insurance covered but probably spent $100k on medical. Nothing. Years. Its so bad I cant read more then 3 or 4 pages of a book or even do basic stuff except listening to music. Really hard to shower, etc. Its scary. The only thing I can think of is get a sleep study and I doubt it would help. Based on your experience what am I missing? Its so intense I don't want to be alive. Its like im drugged 24/7 and its really, really painful. Housebound etc. What do I do? What has helped you?

Hello Richmond,

I experienced exactly this for a few years. No supplements have ever ever helped, I minimally was given a few of the fancy Rx medications - I can’t even remember which, but realised quickly that they did nothing good.

I accidentally, for a serious injury, was given Tramadol and found that I had a small amount of energy. Raised the level a 2-3 points for a couple of hours! Because they are a sort of opioid doctors won’t prescribe, but finally rheumatologist did, and the difference was remarkable. I kept raising dose from one a day - eventually thought 4 was terrific.
Of course you soon become adjusted, and i still sometimes would like another, but I’ve been completely rigid at not increasing, no matter what, for 4-5 years now. When it wears off , I occasionally head back to the crash hell, but I time it so it’s a couple of hours before sleep, and I am content with that.

i declined in ME, and I’m now pretty bedbound, but usually, in the mornings, I really enjoy life: being there; I actually feel great, as long as I don’t have to move or get up.
In the afternoons I don’t feel well at all - but seldom the full crash.

At the Stanford clinic , where I was diagnosed, I confessed, timidly, that I took 2 tram a day. The PA said, ,”O, we see far more than that”.it turns out that Tramadol can give energy.. My then doctor could not believe it, until she looked it up on her phone.

my deep sympathies are with you. Years ago I picked up a phrase from somewhere: ‘Purple Train Wreck’, which is my shorthand ddescription.

Good luck, with finding a way of life.

Sydney.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I accidentally, for a serious injury, was given Tramadol and found that I had a small amount of energy. Raised the level a 2-3 points for a couple of hours! Because they are a sort of opioid doctors won’t prescribe, but finally rheumatologist did, and the difference was remarkable. I kept raising dose from one a day - eventually thought 4 was terrific.

Yes, high-dose tramadol can increase energy, but not low-dose tramadol. This is because, at high doses, tramadol is a norepinephrine reuptake inhibitor, whereas at low doses it is not.

If you want a pure norepinephrine reuptake inhibitor, without any opioid or serotonin effects, you would have to try Strattera/atomoxetine, which is the only pure norepinephrine reuptake inhibitor. For more information, see:

Strattera (atomoxetine)
https://forums.phoenixrising.me/threads/strattera-atomoxetine.19755/

It has many of the same effects as high-dose tramadol, but you only need a very small dose. Note that some people have a genetic mutation which extends the atomoxetine half-life from ~5 hours to ~22 hours.

The last time I tried 10mg of Strattera/atomoxetine I felt cured for about 8 hours, and then crashed for a month.

Hope this helps.
 
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
For cognitive dysfunction (brain fog), some people see benefit from pure EPA (eicosa-pentaenoic acid), without any DHA. However, the quality of pure EPA varies widely from manufacturer to manufacturer. This is because oxygen and heat can quickly degrade the fish oil.

Minami Nutrition, which goes by the name "Garden of Life" in the US, uses an extraction process without any heat, to fully preserve the Omega-3 fish oils. Personally, I found Minami's pure 500mg EPA product superior to Vascepa's synthetic prescription 1000mg EPA, for cognitive benefits. (Not sure why they are so different.)

Others find benefit from Branched-Chain Amino Acids (BCAAs), which are naturally found in protein.
But you will have to experiment to find what works for you, as everyone reacts differently.

Hope this helps.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
In the early years of my illness, I was transformed by tramadol. Jay Goldstein, MD had me try it in his office and it brought me back from the virtual dead. It served that purpose for me for a few years, but eventually lost its benefit. Other opioids have been the mainstay of my treatment since - meaning that this kind of medication helps me more than anything else. But nothing has repeated the magical benefit that tramadol had in those early years (25+ years ago). I was taking 100 mg 4 times a day, then.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
What has helped you?
As someone who was deeply skeptical that it would apply to me, and amazed to discover it did, I'd be remiss in not suggesting that anyone with ME/CFS look into spinal/structural issues. I read @jeff_w 's story when he'd discovered that he had craniocervical instability, and learned that once he was treated for it, his ME/CFS resolved. So, I decided to hand my cervical MRI (taken for other reasons) to Dr. Kaufman to share with the neurosurgeon, Dr. Bolognese (same doctors that Jeff was seeing), out of curiosity. Then, Jennifer Brea came out with her very similar story. As I said already, I was surprised to find out that CCI was a major contributor to my illness as well. The number of ME/CFS sufferers who are finding they do have CCI or another spinal issue is astounding.

If you haven't already, you might want to check out this thread. It's got to be one of the longest on the forum! Good luck in your search for answers.
 

splusholia

Senior Member
Messages
243
Working on my gut health. Pre-biotics and high doses of probiotics (including Mutaflor) helped. It has not been a cure but he has taken me from being 100% bedridden and unable to do anything cognitively to being able to finish novels, write poetry, potter around, occasionally go out, enjoy music. I found the cfsremission website helpful - it focuses on the microbiome. I also found vitamin D and thiamine helpful, but I had to make sure I was taking the cofactors as well.
 

Wishful

Senior Member
Messages
5,859
Location
Alberta
The malaise/brainfog symptoms have been constant for me (20 years). I've successfully treated (and cured) some symptoms, but not those. The severity varies, so sometimes I've felt a bit more energetic and clearer-headed, but it's been worse lately. I didn't figure out what caused the occasional improvements, although some detrimental things, such as my present sensitivity to proline, have been easier to figure out.

I expect that most of us have had little success in treating the baseline cognitive symptoms. Many of us have comorbid conditions that make those symptoms worse than their minimum, so changes in diet or living environment, or treatments for those other problems (gut, spine) can result in improvements.

I think the cognitive problems involve glial malfunctions. I posted a link to a paper recently (search for 'neuroglia', I think) that explained how neuroglia could cause the ME symptoms. If I were to choose a cell to experiment with to try to improve cognitive function, it would be astrocytes.

I suggest trying a nutritionally-devoid diet for at least a few days to test whether there are any nutrients or other food components that worsen your symptoms.
 

cheeseater

Senior Member
Messages
182
I used to get a lot of relief from Celebrex until they banned it in the US for slightly increasing incidence of stroke or heart attack or something. Now just stuck with a daily 15mg of Meloxicam, along with my 6 cups of freshly brewed fairly strong coffee. I stop the coffee by 4pm and can go to sleep at 11.
 

hapl808

Senior Member
Messages
2,224
I can't even get to where I can function and fully take care of myself. Does anybody have any ideas? I'm lost. Also kinda venting.

Tried prescribed modafinil, amphetamine, LDN, many forms of glutathione, all the mthfr stuff, my doc put me on low dose anabolic steroids, high dose T3 thyroid, mitocore, cox-2 inhibitors, injected b12 twice a week, got ketamine (calms down microglia, etc) injections from my doctor, all the EPA/DHA fatty acids, kratom, caffeine, TMS, tDCS, exercise, cutting out dairy and gluten, adrenal fatigue treatment. Also tried a lot of alternative medicine with multiple naturalpathic doctors. I've gotten nowhere.

I was studying cell and molecular biology in University before I had to give up. Then become obsessive about trying to fix it and used some of what I learned, mainly to seek out specialist and get new novel treatments. Insurance covered but probably spent $100k on medical. Nothing.

Just stumbled on this and resonates. I had to interact with people (in my home) for two hours today. Then I crashed immediately for 5+ hours. Finally made it to the kitchen to get tea, but I'm exhausted and nauseous and in pain and feel that poisoned feeling and just miserable - especially because my decline from moderate to severe was totally avoidable (I was trying to make a very ungrateful and now long departed fiance happy).

I tried modafinil for the first time a couple weeks ago. Not 200mg, but 25mg. Made me feel somewhat better for a few hours, then crashed for 3-4 days. I've tried LDN, glutathione, low dose anabolic steroids, various B12, etc. Didn't do the ketamine. Tried keto, carnivore, low amine, low histamine, DNRS, and so forth. Useless. Traditional Chinese Medicine, Japanese Kampo, ayurvedic herbs.

In the end, doctors caused much more damage than help. Other than my fiance, if I could take back one doctor's appointment, good chance I'm moderate and not severe.

And I have to get out of bed because I have groceries being delivered - ordered when I didn't realize how awful I was going to feel tonight. Although I should've known.

I know mental state is always worse in a crash, but when crashes follow any exertion (cognitive, physical, anything), it makes living somewhat disappointing.
 
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