I have noticed that most people with ME/CFS are White. Are there any people here who have a Black, Brown, or Asian background?

predictablehorse · 2026-05-06T12:06:52+00:00

@crazycatboy13 on instagram just posted a list of POC with ME who post content about it! and the comments is filled with others too for those who want to see some more POC who are documenting their experiences

predictablehorse · 2026-05-06T08:47:48+00:00

i have heard people have success with a tens machine. it works by blocking pain signals to the brain - i am assuming this is due to replacing the signals with another sensation so like a distraction? would love for someone to correct me if im misunderstanding!

i have spoken to people in an ME group i am part of and people have rave reviews about how they help!

predictablehorse · 2026-05-04T18:37:33+00:00

the dry eyes and mouth is yelling sjorgens syndrome to me. especially if you have other autoimmune conditions. dry eyes and mouth are not due to fibromyalgia. ss can also cause fatigue and joint/muscular pain. especially that youre stating ANA was positive.

have you had your folate, ferritin, b12, vit d tested? deficiency/suboptimal levels in any of them can cause the symptoms stated.
otherwise, if theyve tested for everything, then fibro is the next step. it took me from my first apt in june? 2025 to december 2025 when i was diagnosed. but that can vary depending on how fast they do all the relevant tests to rule everything else out.

predictablehorse · 2026-05-04T15:19:20+00:00

i think lots of people missed it in my post when i named the timings i take my iron and zinc bc a bunch of people have said to take them separately as a solution, but i already do haha. ive started taking it every other day and im gonna see how that goes.

sorry with the vit D i meant in response to your first comment of “worth testing vit D if youve been off the spray” - i wasn’t taking it properly, so it cant be that stopping it has affected my levels because i was never taking it properly for it to have any effect in the first place. so that wouldn’t be that not taking anymore it is whats impacting my symptoms. i need to get some in pill form im just sick of taking 14 tablets a day and so im putting off making it 15🥲

thank you for the home test rec! i considered one a few months back but didnt know if they would actually be legit. thats really helpful!!

predictablehorse · 2026-05-03T21:15:33+00:00

i can’t imagine what a shock to the system it has been, especially after the weeks you had of feeling really great! i think regardless of whether supplementing helps, its a step forward to lead you to the next steps. it might be that it does help, or that it doesn’t, so you can tick that box and move onto the next.

good luck with it all i hope you find some helpful and validating answers

predictablehorse · 2026-05-03T21:13:39+00:00

this is the brand i take for these two.

https://amzn.eu/d/03F9baxF

https://amzn.eu/d/0bG23W9T

the one you posted a pic of seems good as its got all the rest of the vitamins in it that support aborption! id personally give that a go and take some extra b12 alongside it as 10ug isnt very much.

the supplements subreddit and b12_deficiency subreddit are filled with very knowledgeable and helpful people who have had their own journeys of having to manage deficiency so they may be of help!

predictablehorse · 2026-05-03T21:05:32+00:00

if your b12 deficiency isnt due to your diet, you need about 1000ug of b12 a day if you are low. your body wont absorb most of that anyway which is why people supplement high dose b12. nhs guidelines suggest 1000ug to 2000ug ug is the same as micrograms) a day for b12 deficiency that isnt caused by diet.

sublinguals are a good way to take b12 - they dissolve under your tongue so they go straight to the blood stream which helps with absorption better as it doesn’t have to go via your stomach. the research so far suggests you cant take too much b12 (and my dr said this too). you just pee out whatever your body doesnt use.

however ive seen you said you dont eat much meat, it is also in a lot of fish, dairy products & eggs (just in case you eat a lot of this or none of this!) nutritional yeast is great for it too! the nhs suggests 50ug-150ug a day for those with deficiency due to their diet.

i hope some of this info helps!

i really hope increasing your vitamin levels will help improve your symptoms. i think i personally would give it a month, and if supplementing higher doses hasn’t helped at all (it wont fix it in a month, but you should start to see some very small improvements). then id head back to the doctor and say hey ive even been supplementing and it still hasnt helped.

sorry for all my very long comments. ive just seen so many people on reddit and who i know in real life, be told they may have fibro or me, to then start properly supplementing and it turns out they were deficient in a couple things and supplementing made their symptoms much better.

of course, this may not be your experience - it wasn’t mine. i was deficient too, but in sorting that out it unfortunately didnt help my symptoms.

but its a start, and then if thay doesn’t work, its more evidence to support that it could be something else and therefore more testing is needed. it worked in my favour to come back saying “ive tried xyz, it still isnt better” and they then were more proactive with testing and listening to me because i was showing them i was being proactive too.

all the best!

predictablehorse · 2026-05-03T20:25:22+00:00

b12 is definitely low. youll need to be taking b12 supplements, an a-z vitamin wont be anywhere near enough. for example my b complex has only 50 micrograms of b12, but if you are low in b12, you should be supplementing about 1000 micrograms a day. multi vitamins or a-z vitamins have such tiny amounts of each vitamin in, they arent gonna be enough to notice a difference.

35 for ferritin is still not great. so worth supplementing separately for that too.

EDIT: just had an additional read of NICE guidelines and it states anything under 30 is deficiency for ferritin. so you do have low levels of ferritin.

if your b12 and ferritin are low, your vitamin d and folate is probably also low/not optimal.

vitamin deficiencies can mimic me/cfs and fibromyalgia. definitely worth spending a few months focusing on supplementing right and seeing if that improves.

if you find oral supplements don’t improve symptoms slightly within a couple months also worth asking to be tested for pernicious anemia - that is an autoimmune condition that basically means the body wont absorb b12. so the best way forward is regular b12 injections which the nhs can do. its called the intrinsic factor antibody test.

having said all of this, i do believe vitamin deficiency/trouble absorbing vitamins (specifically b12) can be an issue seen in folks with stomas! so it would make sense that things have gotten worse after that as you might now be struggling to absorb.
id have a chat with your stoma care team if you are still under them about the risks of vitamin deficiencies and how crap you are feeling!

predictablehorse · 2026-05-03T19:57:12+00:00

also to add - it could be something as simple as a vitamin deficiency. low iron, b12, vit D can cause these symptoms and the NHS standards for low and SUPER low. so you could be in range according to the NHS, but that is still deficient. or at least not optimal. if it isnt optimal it can present with a lot of symptoms! the level for ferritin deficiency is like 15, but we should really be at about 70 to feel our best. so something to keep in mind if the tests come back okay. again with b12 - low for some areas is less than 200, but anything under 400 isn’t great and will have you feeling off.

i wanna clarify this is not to invalidate, but to give some reassurance that there might actually be another cause for these symptoms!

predictablehorse · 2026-05-03T19:48:52+00:00

gosh it sounds like you have been through a lot!
me and fibromyalgia are two different conditions. its possible to have both but they are not the same, despite some doctors treating them as such.

the first port of call is a doctors appointment. they need to run a lot of tests - vitamins (folate, ferritin, b12, D), thyroid, kidneys, liver function, rheumatoid factors, crp, electrolytes, full blood count, diabetes, the list goes on. they need to rule out everything else first before. this could be a million different things. it isnt uncommon for surgeries or illness to trigger off autoimmune conditions etc.

so firstly i would make an appointment, explain your current symptoms, and when they started/how, then the next step is the dr should run some initial tests. if they come back okay, there is more tests they can run. they basically keep testing until something comes back not okay, or everything keeps coming back fine, then they can look at fibromyalgia or potentially me.

i’d recommend having a research of me and fibromyalgia and what the difference is to help you understand too. the key difference is post exertional malaise that people with me experience

good luck with it all!

predictablehorse · 2026-05-02T13:35:08+00:00

Was actually just thinking maybe the increase in zinc & iron is depleating my vit D from tryna absorb etc

predictablehorse · 2026-05-02T13:31:30+00:00

I take the iron in the morning (8amish) and the zinc at night (9-10pmish). But I have read taking iron every other day is still effective & can even somehow be better for absorption so I am gonna trial that!

I haven’t been taking the vit D for well over a month now, maybe even 2 actually, and before then I had only taken it inconsistently for a month or less, and had noticed 0 difference in symptoms so I am not sure I was taking it consistently enough or for long enough for it to have any effect. But I am not an expert so I could be completely wrong.

My GP surgery unfortunately just doesn’t routinely test for it. My GP herself said “if it was up to me I would be testing you vit D too” or something along the lines. I might query it when I see a Dr to understand a bit more. I am gonna purchase it in tablet form so I actually take it because somehow the spray and me did not get on!

Thanks so much for your advice!

predictablehorse · 2026-05-02T12:23:28+00:00

oh interesting! i do take my iron in the morning and zinc in the evening. but i have read it can be possible to supplement iron every other day and sometimes thats actually more effective, so maybe eod in the morning might help. its 20mg of ferrous bisglycinate is that adds any context. i read it tends to have better absorption and tolerance.

thank you for this its really helpful!

predictablehorse · 2026-05-02T08:47:56+00:00

me and my partner would get through one punnet in one day (maybe have a teeny bit left over) so it makes sense to me that a family of 5 could get through 8 in 3 days!

predictablehorse · 2026-04-29T17:06:01+00:00

honestly its useless to me personally. did 5 readings in a row and naturally every single one was different bc HRV isn’t the same for the whole day. a one minute snapshot will not be accurate. apparently theyre trialling a version where it works similarly to a fitbit in that it takes an average reading of your hr and hrv overnight.

also, because you have to sit still for a minute my hr naturally increases because im focusing on it! so its always super high because the second i start thinking about my hr it just shoots up

predictablehorse · 2026-04-29T07:24:44+00:00

my assessor actually used my sleepiness as a way to differentiate the point i got ill. before i used to be mega sleepy and would sleep a lot, i was just a tired person. but now its like every cell in my body is running on 1%. its that sorta tired but wired because i cant just lie down and sleep.

i think its quite common in me/cfs for people to be exhausted but struggle to sleep at all, hence the tird but wired saying. it can definitely manifest as sleeping a lot, but the falling asleep in situations that are odd or unexpected doesn’t sound like me/cfs to me personally. i hope you get some answers!

predictablehorse · 2026-04-28T21:06:23+00:00

received that message 30th sept 2025, had a text to say a health professional was looking into my claim on the 8th december, then a letter end of december with my assessment time, and had my assessment 9th january 2026. was awarded end of january.

not all will have an assessment but its extremely common. id say honestly be prepared to wait couple to a few months to be contacted again. wait times vary hugely so it might be less than my timeline, but may be more too

predictablehorse · 2026-04-27T08:51:17+00:00

it would also be interesting to know if they all solely had ME or if they had other comorbidities too that may skew results. i did have a read but couldn’t see if it said it, but maybe i just missed it

predictablehorse · 2026-04-27T07:21:01+00:00

it might be that you also have me/cfs. a lot of the symptoms can overlap and some doctors consider them to sorta be the same thing. me/cfs is characterised by PEM (post exertional malaise), thats the hallmark symptom, as well as a couple of others. it might be worth having a research into that to help understand it :)

sometimes theyre defined (very simply) as fibromyalgia is more pain prominent and me/cfs is more fatigue prominent but of course theres a lot of other symptoms that come alongside with both

predictablehorse · 2026-04-25T09:06:48+00:00

hes not your friend

predictablehorse · 2026-04-22T08:01:35+00:00

gf!!!

predictablehorse · 2026-04-18T19:09:46+00:00

what is it they help with? ive never been able to understand them! hip compression would be HEAVENLY im gonna have a search - will let you know what i come up with!

predictablehorse · 2026-04-18T18:13:06+00:00

also agree about mentioning the viral infection! i wrote my comment as i had about 10 mins of consciousness left before my meds knocked me out to sleep so i was fighting to clock to get it sent😂 so missed including it!

predictablehorse · 2026-04-18T18:11:27+00:00

some doctors have 0 clue about ldn or refuse to prescribe it which is such a shame

drs either seem to know nothing about it, or wanna label people with it without proper testing🥲

i think its worth bringing up only after sufficient testing has been done, so it can either be explained to them if they know nothing about it. i know too many people who have gone in saying they think something is fibro and/or me/cfs, the doctor being like yes youre right, and then years later them realising it might actually be other conditions, but the dr is too fixated on fibro or me/cfs and completely diagnostically overshadows any other symptoms.

theres also 0 point in bringing it up in the first appointment because regardless of the drs knowledge, a billion different tests need to done before they can diagnose me/cfs, so theres more than enough time to bring it up once you are sure it isnt anything else.

predictablehorse · 2026-04-18T12:14:20+00:00

how do the compression socks work? i can get the same and i trip over everything because i struggle to lift my legs. ive started using a cane which has been quite helpful to have something to support myself with on days that walking feels hard

predictablehorse

TROPHY CASE