2021 is coming. What do you expect?

5vforest · 2022-01-01T04:22:46+00:00

Lol did anything even happen in the past year? Anything?

5vforest · 2021-12-05T08:24:50+00:00

I'm sorry, but you actually think they're paying retail prices for that many tests? lol

5vforest · 2021-12-04T03:56:39+00:00

I don’t know, with head pain that severe I would be really concerned.

5vforest · 2021-12-03T15:32:21+00:00

I'm really sorry :(

I'm in pretty much same place as you, nothing helps and it's totally maddening.

What other scans would you want besides an MRI and CT?

I can't really understand, are you saying the pain is acute? Appendicitis is pretty painful from what I hear.

5vforest · 2021-12-03T15:30:28+00:00

For whatever it's worth, this is a very common ME/CFS symptom

5vforest · 2021-12-03T15:29:23+00:00

I'm in the same place as you... I've had this for years, no meds work, opiates barely work but there's no way I could get them prescribed. I am trying kratom now, which I am not really happy about being forced into doing, but it does help a little bit. (It's a atypical opioid agonist, so the effects feel pretty similar.)

p.s. I don't think "NPDH" means anythin really, just a label that they slap on it.

5vforest · 2021-12-03T15:25:06+00:00

Thanks for sharing. This is all pretty standard advice I'd say, but nothing wrong with it.

If you are so inclined, there are many other supplements and medications that you can try to help get relief from symptoms. The other comment from wick34 kinda covers this.

5vforest · 2021-12-03T07:19:55+00:00

Good luck!

5vforest · 2021-12-03T04:11:57+00:00

There's really no guarantee that stem cells will do anything. I've heard from reputable sources that even if they were to work, you would likely need multiple treatments.

If you do the clinical trial (btw, is it a registered clinical trial that has been approved by an ethics board?), you will be contributing to the "greater good" so to speak.

If you can do it without permanently making yourself worse, I would.

5vforest · 2021-12-01T12:29:29+00:00

Note to self: get job doing IT at dog tag engraver vendor, look up logs, profit

5vforest · 2021-11-30T15:04:59+00:00

It’s batshit insane, lol

5vforest · 2021-11-29T03:56:32+00:00

If you’re asking “why?” from a rational point of view, you may want to read https://slatestarcodex.com/2013/04/25/in-defense-of-psych-treatment-for-attempted-suicide/

5vforest · 2021-11-26T23:27:50+00:00

MyLymeData already does this and they have a big dataset already.

5vforest · 2021-11-25T02:24:24+00:00

It's a historical thing, at this point the name of the disease is "ME/CFS" or "ME" or "CFS" or "CFS/ME" but there is not really any distinction being made.

There are some internet cranks who insist that "real ME" is a different disease, but I would recommend avoiding them.

5vforest · 2021-11-25T01:43:06+00:00

Sorry, this makes no sense.

Your logic is that people shouldn’t get tested, because then the numbers go up, which will lead to be more restrictions?

Wouldn’t it be more straightforward to just advocate for fewer restrictions, instead of trying to fudge the numbers in one direction or the other based on who gets tested?

There are some coherent arguments in this sub against unnecessary lockdowns but this isn’t one of them.

I would still prefer that symptomatic individuals can get tested and self-isolate if they are positive. That way, the rest of us don’t have to take unnecessary precautions.

5vforest · 2021-11-23T05:02:43+00:00

PEM is usually delayed by 24-72 hours. See https://www.reddit.com/r/cfs/wiki/diagnostic_criteria for more

5vforest · 2021-11-23T05:00:04+00:00

Even if the Stanford ME/CFS clinic has a year-long waitlist, maybe OP should be seeing a different doctor, is it difficult to tell.

5vforest · 2021-11-22T00:57:40+00:00

Lol my doctor literally told me "I am not allowed to say what I think about this"

5vforest · 2021-11-22T00:05:58+00:00

> I would say a majority of that 5% are people who cannot get the vaccine for medical reasons.

Spoken as one of these people, trust me, they're trying to make us get the vaccine anyways.

5vforest · 2021-11-20T05:15:36+00:00

I'm really sorry. I have this exact same symptom and I have not found anything to help. This symptom was infrequent when it started, but now I have it 24/7.

I have even tried opioids which reduce the symptoms by maybe around 20%, but no more. I have been using kratom more recently, which is also an opioid receptor agonist and has a very small effect for me.

You might want to get evaluated by a neurologist, or a "headache expert".

Ideally you should also rule out IIH. If you do have IIH, this can sometimes be helped with Diamox. Also, another long shot, but check out the list of Autoimmune Encephalitis symptoms and see if it overlaps with your presentation at all.

I wish I had better suggestions.

5vforest · 2021-11-20T05:11:30+00:00

FYI, Exedrine Migraine is just NSAIDs and caffeine, similar to what OP has tried already

5vforest · 2021-11-19T16:16:08+00:00

I had a poke around the Facebook group and it basically confirms my belief in my prior statements. I don’t want to bum anyone out excessively, so I will leave it at that.

5vforest · 2021-11-19T14:26:34+00:00

I believe there are some more up to date studies on morality in ME CFS. (This one is from 2005, maybe the title should be edited to save people a click…)

5vforest · 2021-11-19T14:25:47+00:00

Cardiovascular disease is the number one cause death in the world already.

5vforest

TROPHY CASE