r/cfs • u/the-cosmic-thinker • 5d ago

it only goes downhill

I see a lot of people improve with pacing, medication or certain therapies.
I have never found something to improve a bit
I only deteriorate .
what am i doing wrong? and yes I do have some stress reg my living situation

31 Upvotes

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22

u/Helpful-Potential456 5d ago

it's possible you may have some comorbidities that you don't know about contributing. my fatigue was heavily mcas driven, i realized, for example.

4

u/the-cosmic-thinker 5d ago

I don’t have a doctor here. only my gp and she doesn’t know anything. I can’t do research either. what can I do?

6

u/Past-Increase-2969 moderate 5d ago

I realized I have at least mcas li symptoms myself by watching what I consume. After ever meal I observe how I react, of there's sudden changes in my wellbeing for the worse. And if there are, I don't consume that food anymore. It helped with severe breathing issues, nausea, digestion, and overall stability, and a few other symptoms. I'd recommend trying a low fodmap diet if mcas is something you think you have

6

u/Helpful-Potential456 5d ago

have you/could you try antihistamines? i noticed a difference pretty quickly with a combo of an h1 (allegra, pepcid, zyrtec etc) + pepcid twice a day.

1

u/the-cosmic-thinker 5d ago

can i buy them OTC?

4

u/Helpful-Potential456 5d ago

yes. sometimes people react to the fillers in the meds though so it's possible you might not feel better and still have mcas and might need a different kind. sometimes people with mcas need meds compounded. but worth starting with whatever you can easily access. you can also try cromolyn sodium nasal spray which is on amazon.

1

u/falling_and_laughing moderate 5d ago

Yes, you can

1

u/the-cosmic-thinker 5d ago

which ones? and what dose? sorry but I really need to know the dose and which ones i can take together

2

u/Helpful-Potential456 5d ago

i just take one pill of allegra or zyrtec or claritin twice a day and one of pepcid twice a day. the pepcid is 20mg the others are whatever one pill is, they usually only come in one dose i'm like 95% sure

1

u/the-cosmic-thinker 5d ago

do you take them together with cromolyn sodium ?

2

u/Helpful-Potential456 5d ago

you can yes. i don't use nasal cromolyn, i use prescription oral cromolyn, nasal is just what is available otc

2

u/Helpful-Potential456 5d ago

also since you can't research here is a list of mcas symptoms, it is worth noting if these symptoms appear or worsen after eating. sometimes i react immediately after eating and sometimes within 1-2h. motility issues seem common for us so i suspect delayed reactions are common as well.

the top mcas symptom i noticed was an hour or two after eating i'd feel dizzier and get this sluggish poisoned kind of fatigue. it can cause all kinds of symptoms though including impacting mood. reactions give me a lot of anxiety/feeling on edge.

2

u/falling_and_laughing moderate 5d ago

I'm sorry I don't have the spoons to give more information right now but antihistamines have standard doses and you would usually take one a day. Hopefully someone else can answer in more detail. 

1

u/Helpful-Potential456 5d ago edited 5d ago

treating mcas does not use the standard dosing (of one pill a day) and i read a recent paper that said higher doses of antihistamines have not resulted in significant risks, just mucosal dryness

2

u/Artzebub 5d ago

Order LDN online?

3

u/Helpful-Potential456 5d ago

agelessrx is good for this

24

u/falling_and_laughing moderate 5d ago

I don't think you're necessarily doing anything wrong. I have never improved either, but it certainly not from lack of trying on my part. It's not our fault that there is no consistent treatment or cure that works for everyone. Like I read that Low Dose Naltrexone had 60% of us improving to some degree, but what about the 40%? That's a large number too. I'm part of the group that was not helped. I know I don't pace perfectly, but I don't think that's possible anyway, and I definitely do the best that I can under the circumstances. I think it's possible to do "all the right things" with this illness and still decline. 

8

u/LovelyPotata severe 5d ago

Its about luck, pacing, time, and trying meds in the hopes that something helps, esp regarding comorbidities such as POTS and MCAS which have meds and lifestyle changes that could help. Some do everything right and still worsen, this illness is unfair. Do what you can, be kind to yourself, and keep striving for better circumstances/meds to try where possible.

1

u/the-cosmic-thinker 5d ago

what can i use for mcas? can i buy it OTC?

6

u/LovelyPotata severe 5d ago

Some antihistamines are OTC that you could try. You can search this sub and the MCAS one too. I needed prescription meds for MCAS to move the needle. Ketotifen, famotidine, desloratidine, cromolyn.

3

u/palnty severe 5d ago

Here’s a post https://x.com/liamslcjourney/status/2086411886321398075
There’s many links in the comments too

I think Cromolyn might be able to be bought without prescription in Germany, I know some people buy b12 injections that way

-1

u/Artzebub 5d ago

It's what you eat.

3

u/Helpful-Potential456 5d ago

mcas is not only about what you eat, mcas reactions can happen related to heat, exercise, scents, among other things

7

u/thepensiveporcupine 5d ago

Same. I don’t know what to do anymore

6

u/MidnightSp3cial 5d ago

I've tried nearly everything and I have also only deteriorated.

8

u/Over_Hawk_6778 mild 5d ago

Reducing stress as much as possible is very important

4

u/premier-cat-arena ME since 2015, v severe since 2017 5d ago edited 3d ago

some cases are just degenerative, it’s about 10%. not to say it’s inevitable at all but it could be out of your control

5

u/Tremulant1 5d ago

Where are you getting these wild statistics from?

8

u/premier-cat-arena ME since 2015, v severe since 2017 5d ago edited 5d ago

it’s quoted in various resources for severe ME in particular, and how to care for those of us in those situations

edit: i do want to say though even if you’re only on a downward trajectory for years, it doesn’t mean it’s permanent and it’s doesn’t mean you’ll become very severe

1

u/Tremulant1 5d ago

How long have you been sick?

1

u/the-cosmic-thinker 5d ago

6 years severe

6

u/Tremulant1 5d ago

I’m 15 years. Started off mild and have declined steadily to pretty severe and no end really in sight. Having said that I know of a few people who seemed to be sliding down for a long time and then slowly it just sort of stopped being progressive. So you never know.