Getting worse

[Mimicry]

Warning, long rant ahead 😅

I've been ill with ME since 2008 and was mild for the first 13 years, more or less able to study, do a part-time job, exercise a bit, have hobbies and a social life. Since May 2021 my ME has been getting worse and worse, not sure why (edit. There actually was a stressful period back then but I didn't crash from it, instead I started getting slowly worse which I think is weird). Then I had my first bout of covid in Feb 2022 and the second one in Oct 2022 and they left me in a horrible condition. I'm currently moderate, so I'm not in bad trouble (yet) but still worried because I have no idea what to do and there are no real treatments available where I live (Finland, it's basically all GET and brain retraining here, nevermind some doctors who prescribe LDN and LDA). I'm homebound, my energy envelope is less than 2 hours of light activity a day and I try my best to pace but as you know it's not exactly easy. My most profound symptoms are lightheadedness, muscle pain, feverish feeling, weakness and nausea.

I've been trying so many different supplements over the last couple years and some of them, like arginine and ubiquinone combined with NADH, seem to help... for a week, until I crash again. I was able to help my spouse with renovating our kitchen floor in July thanks to arginine but after that I crashed badly and have been at my all-time low ever since. The only supplement that seems to help consistently is salt water. Nevertheless, I just ordered TUDCA and sodium butyrate inspired by the WASF3 discussion here on PR.

I'm on mirtazapine 30 mg, I started it a year ago, and it has helped somewhat with OI symptoms (it raises noradrenaline levels), depression, sleep and nausea. It also seems to help my migraines a tiny bit. I started keto diet in May this year and it cured my gastroparesis and reactive hypoglycemia attacks, but I feel like it has zapped my energy and made the lactic acid burning in my muscles worse. I'm also on LDN, only 0.4 mg, because I get severe side effects whenever I increase the dose even by tiny bit.

In addition to my worsening ME baseline I've been getting a bunch of comorbidities. I'm wondering if they're actually what's making my ME worse because the additional stress can't be good. I developed a chronic daily migraine in May 2022 and thought it might be due to either LDN or the hormonal BC I was on at the time so I stopped them, to no avail. Now I'm thinking covid triggered it (and my neurologist thinks so too). I've tried different prophylactics over the last year but they all give me terrible side effects so I had to stop them. Fortunately I found a supplement combo that helps a tiny bit so I don't need to use triptans every day. I finally got an appointment with a neurologist a month ago, and am hoping that I get to try the biologics soon.

I also have persistent pain and paresthesias in my hands, feet and calves, and am 99% sure it's small fiber neuropathy. I've had it for ten years or so but it's gotten horrible over the last two years. I just got an additional referral to the neurologist so I'm hoping they'll do a skin biopsy. I'm already on pregabalin due to sciatica I've had since 2010 but unfortunately it doesn't seem to help with the neuropathy.

In addition to these, I'm suspecting I might have endometriosis and hypopituitarism but I have no idea how to convey my suspicions to the doctors without them thinking I'm a hypochondriac. 😅 I also have CPTSD but I severely doubt that it could be making my symptoms worse now that my mental health is actually in a relatively good place. I've been meditating almost daily for months (I started it again this spring, but I've been doing it on and off for the past ten years or so and it's been very helpful for my mental health) and it's done absolutely nothing for my physical symptoms.

I'm not sure what my point was when I started writing this essay, I guess I'm mostly just looking for commiseration. Have you had similar crashes and did you ever recover? Do you think getting the migraines properly under control might help with my symptoms in the long run?

Thanks for reading and for any replies ❤️🙏

 

[linusbert]

high dose riboflavin in like 400mg per day over months might help for migraine, there are some studies on pubmed about this.

 

[andyguitar]

Do you think getting the migraines properly under control might help with my symptoms in the long run?

Sure, i'd expect it to make a difference to how you feel day to day, not just in the long term. So finding a treatment that works is something to aim for. You might need to try a few different drugs over a period until you get a good result. Good luck with it.

 

[Mimicry]

high dose riboflavin in like 400mg per day over months might help for migraine, there are some studies on pubmed about this.

I've tried riboflavin, unfortunately it did nothing for my migraines. Neither did ubiquinone even though it's supposed to be good for migraines 😔 100 mg 5-HTP, 500 mg GABA, 500 mg magnesium and 400 mg ginger twice a day seem to help though.

 

[Mimicry]

Sure, i'd expect it to make a difference to how you feel day to day, not just in the long term. So finding a treatment that works is something to aim for. You might need to try a few different drugs over a period until you get a good result. Good luck with it.

Thank you, I really need all the luck I can get 🙏

 

[linusbert]

I've tried riboflavin, unfortunately it did nothing for my migraines. Neither did ubiquinone even though it's supposed to be good for migraines 😔 100 mg 5-HTP, 500 mg GABA, 500 mg magnesium and 400 mg ginger twice a day seem to help though.

how long did you take it? in the studies it took month.

 

[LINE]

You have to careful with Arginine since it can enhance viral activity.

You also have to be careful moving one supplement too far since it can knock out the other nutrients. There are several metabolic pathways trying to coordinate. Hope this makes sense.

 

[Mimicry]

You have to careful with Arginine since it can enhance viral activity.

You also have to be careful moving one supplement too far since it can knock out the other nutrients. There are several metabolic pathways trying to coordinate. Hope this makes sense.

Yeah, I read that about arginine. And it definitely makes sense. I've been trying to use supplements in combination so that they support each others effect, and this forum has been of great help with it for the past several years.

 

[Mimicry]

how long did you take it? in the studies it took month.

Two months I think, but it was a year ago so can't remember. And I might have taken only 200 mg a day so it probably wasn't nearly enough. Now I've been taking a smaller dose (100 mg/day) for two months along with a B complex that has some B2 as well. But I guess I'll try a bigger dose again if Ajovy doesn't work out.

I've used 1300€ on supplements this year alone and I really can't afford much more 😣 I'm so f-ing frustrated.

 

[linusbert]

Two months I think, but it was a year ago so can't remember. And I might have taken only 200 mg a day so it probably wasn't nearly enough. Now I've been taking a smaller dose (100 mg/day) for two months along with a B complex that has some B2 as well. But I guess I'll try a bigger dose again if Ajovy doesn't work out.

I've used 1300€ on supplements this year alone and I really can't afford much more 😣 I'm so f-ing frustrated.

if you did not notice anything, reduction in frequency as well as intensity it might not working i guess.
Q10 you already tried.
acetyl-carnitine comes to mind.

 

[Mimicry]

if you did not notice anything, reduction in frequency as well as intensity it might not working i guess.
Q10 you already tried.
acetyl-carnitine comes to mind.

I actually take acetyl-l-carnitine daily, I noticed it helps with brain fog and OI. I take it along with NAC and creatine. I also bought a herbal supplement that has butterbur and feverfew in it, because those seem to help some folks with migraine, but it didn't do anything. I still have some left for another trial. I also read that taurine is useful for migraines, but I used to take it daily with my amino acid mix and noticed zero effect (neither on migraine nor ME). I've tried it all these past 16 months because I couldn't get doctors to help me for the first 8 months after the headaches became daily. 🥲 But I really appreciate the input ♥️

 

[linusbert]

sorry to hear that. but i know the desperation. i am trying to combat the worsening of my asthma and reaction to things... i cannot find anything that works.
vitamin D did work great 2 years ago... but it doesnt anymore it seams like.

to be honest, sometimes i even think all this vitamin micro nutrition stuff is just a lie and all those wonderful stories of people with miraculous effects are not true or exaggerated.
Freddd did write once that any minor nutritional deficiency might break methylation... so even if taking the big major stuff we all know about, there might be something missing which will prevent the good vitamins from working.
i suspect that copper could be a issue of this. because i do have to low copper and also to low coeruloplasmin. this is in a lot of important pathways regarding allergies and energy metabolism.

there is one more thing you might try. do you have problems with your neck and muscles between upper neck and head? this is a pretty nasty area and either neck itself or muscles in that area can fuck you pretty hard with things you do not even believe are possible.
do you have a seating position where you bend down your neck like looking down to a handy or something?
or do your muscles somehow tighten up in that area? probably bad positioning?
if this is the case, no vitamins and medicine ever will help you... but some physiotherapy , and change in position and maybe a neck bracer and some small little muscle exercises might.
have or get a infrared lamp, let it shine upon that area around neck and head. or put something warm in that area.
there are also exercises with putting just a towel in that area or a pillow to stretch it... no active exercise necessary, just holding that position relaxed for 5 minutes.
check youtube about anything cervical.
but i would refrain from any stretching. either do active or passive exercise and combine with warmth.
Rufous McKinney can tell a story about stretching that area and the bad side effects.

 

[Mimicry]

sorry to hear that. but i know the desperation. i am trying to combat the worsening of my asthma and reaction to things... i cannot find anything that works.
vitamin D did work great 2 years ago... but it doesnt anymore it seams like.

to be honest, sometimes i even think all this vitamin micro nutrition stuff is just a lie and all those wonderful stories of people with miraculous effects are not true or exaggerated.
Freddd did write once that any minor nutritional deficiency might break methylation... so even if taking the big major stuff we all know about, there might be something missing which will prevent the good vitamins from working.
i suspect that copper could be a issue of this. because i do have to low copper and also to low coeruloplasmin. this is in a lot of important pathways regarding allergies and energy metabolism.

there is one more thing you might try. do you have problems with your neck and muscles between upper neck and head? this is a pretty nasty area and either neck itself or muscles in that area can fuck you pretty hard with things you do not even believe are possible.
do you have a seating position where you bend down your neck like looking down to a handy or something?
or do your muscles somehow tighten up in that area? probably bad positioning?
if this is the case, no vitamins and medicine ever will help you... but some physiotherapy , and change in position and maybe a neck bracer and some small little muscle exercises might.
have or get a infrared lamp, let it shine upon that area around neck and head. or put something warm in that area.
there are also exercises with putting just a towel in that area or a pillow to stretch it... no active exercise necessary, just holding that position relaxed for 5 minutes.
check youtube about anything cervical.
but i would refrain from any stretching. either do active or passive exercise and combine with warmth.
Rufous McKinney can tell a story about stretching that area and the bad side effects.

I'm sorry to hear about your asthma, it must be terrifying! I've had a couple allergic reactions where I had trouble breathing and it's awful so I can only imagine what it's like dealing with that on a daily basis. 😣 Do you have MCAS? I don't have a diagnosis but have had symptoms of mild-ish MCAS for a long time, and it has been getting worse this year and I developed new allergies. If I use propranolol for my tachycardia it aggravates the MCAS because apparently it can cause mast cell degranulation. 🙄

I personally don't think the people who have found that vitamins help are lying. They might have deficiencies or very specific problems that respond to the supplements. The human body is a weird and complex machine with way too many moving parts. 😁 I personally have found a supplement combo that seems to help with the migraines a tiny bit and I plan to keep taking it because that means I don't have to take triptans every day.

I've done physical therapy too, different kinds, but some of the exercises the pt made me do only seemed to make the migraines worse. I do massage my neck and back muscles almost daily with my hands, a fascia ball thingy and a massage gun, and I also use a foam roller on my back. And I definitely need to do some light exercise at least a couple days a week because I have TOS-type problems (not diagnosed, but the TOS exercises seem to help) and a lower back injury that both get worse when I don't move. I personally think the problem is more that the migraines are getting the muscles stuck and not the other way around. Also acupuncture did seem to help the migraines even when my upper back and shoulders were acting up pretty badly (before I found out it might be TOS and found exercises that help), so I really doubt it's the cause of the migraine.

I've read a lot about CCI, a friend has it and I've been wondering if I have that too, because if I do and I decide to try botox for my migraines, the injection sites need to be adjusted so that it doesn't weaken the neck muscles and exacerbate the issue. Then again, I don't really have that bobble head feeling, turning my head doesn't cause symptoms and an osteopath did the cracking thing on my neck and my issues didn't seem to get worse.

 

[linusbert]

did the cracking thing on my neck and my issues didn't seem to get worse.

YIKES do not provoke it please

do massage my neck and back muscles almost daily with my hands, a fascia ball thingy and a massage gun,

sounds like a tough program you have.

Do you have MCAS?

i dont know, maybe a bit. i definitely have a problem with allergies.
i suspect that my diabetes medication might play a role in that, basically things getting worse since i take those.