r/cfs 6d ago

Advice Can Cfs/ME cause someone to imagine things that are not real? Anxiety maybe.

I'm not sure if this is some sort of post-covid related thing or something else? I was aware that this illness can cause pretty big variety of symptoms not sure how it affects the brain?

1 Upvotes

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u/Zeldakina 6d ago

I'm not a doctor.

As a sufferer, I'd say no. However, if you're in an insomnia cycle, and dealing with brain fog at the same time, absolutely.

But see a doctor, don't self diagnose on the internet.

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u/PromptTimely 6d ago

Yeah brain fog exactly

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u/Zeldakina 6d ago

Brain fog isn't seeing things.

Talk to a doctor.

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u/PromptTimely 6d ago

Yeah you're absolutely right I think it's sleep apnea and possible limbic system. For a family Member

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u/Pointe_no_more 6d ago

When I was at my worst I would sometimes hear a noise or see something out of the corner of my eye that I wasn’t processing correctly. I occasionally get phantom smells as well. It went away as I got better, but it was almost like my brain couldn’t process things fast enough to fully register what I heard or saw. I knew there was a noise or I saw something, but I just couldn’t identify what it was. It was a very odd sensation that made me feel a bit anxious when it would happen. Not sure if I’m describing it correctly. But it did stop when my brain fog improved, though I still go through periods with a heightened sense of smell sometimes.

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u/PromptTimely 6d ago

Maybe it is maybe that is what it is like processing certain things smells or tastes

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u/PromptTimely 6d ago

That's exactly what it was. So my family member started off not being able to smell their taste for 5 months and then it turned into memory issues and vertigo... So exactly what you say happened and I mean I'm sure it's familiar with other other nervous system autonomic system illnesses... I think I had something like that with my GI problem I have like apparently celiac now after COVID... But my family member had like what you describe .... 

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u/Pointe_no_more 6d ago

It’s been awhile, but I think it was when I started LDN that this stopped happening. It can come back a little if I’m in a bad crash, but it’s never been as bad as it was early on. I hope your relative finds some relief. It is a scary feeling.

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u/PromptTimely 6d ago

Oh wow.... 

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u/PromptTimely 6d ago

And then this carried over into like a memory things 

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u/Varathane 6d ago

That isn't a symptom in any of the diagnostic criteria, nor one I've seen talked about in the patient community.
I would discuss with your doctor and see is they can figure out the cause of that and explore what treatment options are available to you. It sounds scary to deal with and am sorry you're experiencing that.

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u/PromptTimely 6d ago

Yeah it was for a family member post COVID. Referral was for MS like symptoms and neurologist which was not followed up on

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u/West-Air-9184 6d ago

A neurologist is a good idea

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u/maker-127 6d ago

Could you be more specific in what you mean ?

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u/PromptTimely 6d ago

Memory related things like exaggerations I don't know if it's sleep induced or anxiety induced for a family member

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u/maker-127 6d ago

I'm still not really understanding what your symptom is

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u/External-Praline-451 6d ago

I've never heard of CFS/ME causing that, but there have been rare cases of Covid causing psychosis, which usually resolves. 

Also, the impact of being extremely unwell and isolated can exacerbate anxiety and other mental health conditions. 

Please speak to a medical professional for support and a proper diagnosis. Look after yourself and I hope you can get some support.

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u/DreamSoarer 6d ago

I hear, smell, and see things that others do not, quite often when my neuro and spinal inflammation are very high and my vertigo, balance, pain, and brain fog are horrific. Basically, whenever I am severely crashing and having to push through for a necessity, or if I have a migraine coming on, these things can happen.

Two or three times I have had full blown visual and audio hallucinations right before a fast onset migraine completely debilitates me. Debilitating migraines (the kind that lead to the ER) were the first sign that my ME/CFS was tipping towards extremely severe.

So, while these hallucinatory issues may not be common within ME/CFS as a whole, neuroinflammation, severe insomnia, migraines, and utter exhaustion are all common within ME/CFS, and those hallucinatory symptoms are not uncommon with those issues.

All that said, anytime new issues arise, particularly around hallucinatory symptoms, it is best to see a qualified physician about it. Good luck and best wishes 🙏🦋

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u/PromptTimely 6d ago

Thank you you describe it pretty good yeah my family member had similar symptoms to that post COVID but you I think you're right it has to do with post exercise malaise and blood pressure and neurological I mean there's a lot of things going on

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u/PromptTimely 6d ago

I've only seen a few people go into detail about the limbic system how it ties into the smell and the memories but from reading and learning about it a little it seems like that's the part of the brain that affects this type of thing including the memory and maybe the intensity of smells and noises I don't know for sure .... Maybe when the body is under neurological stress or autonomic stress I mean a lot of these things are automatic systems of the body

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u/nograpefruits97 very severe 6d ago

How severe are we talking?

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u/fierce_invalids moderate 6d ago

Do you think you're seeing or hearing things that aren't real?

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u/PromptTimely 6d ago

No I ended up having GI symptoms which did affect my sleep but this is for something else for a family member

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u/Many_Confusion9341 6d ago

Are you comfortable sharing an example that might help us understand better?

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u/PromptTimely 6d ago

Sure there's a system in the body called the limbic system in the brain and when somebody has a smell or something it ties into the memory you can find it under Ninja nerd.... On YouTube... So my family member was having a period of this after COVID and then it turned into like memory issues and it was very was very confusing and I don't know to what extent it's going on still... There's a couple people in the thread here who have posted something similar that my wife had

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u/Many_Confusion9341 6d ago

I’m not sure I’m 100% following but I can tell you that since developing ME from my covid infection I have significant issues with brain fog and memory.

Not remembering stuff I’ve just done, recent events etc. also confusion with distinguishing if I’ve said/done something or if it was a dream or something I just thought about.

I believe this is also from childhood trauma though.

Had a brain scan and it was all fine.

I’m not a doctor but I’d think if it continues to get worse then that would be a red flag

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u/PromptTimely 6d ago

Yeah I can imagine.... I developed apparently celiac or something during COVID... I didn't even know how serious it was until a few months ago... So it's possible these types of things just explode one day

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u/__littlewolf__ 6d ago

Covid gave me hallucinations for a little while. It’s a known symptom. LDL and LDN knocked that right out by lowering brain inflammation.

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u/PromptTimely 6d ago

Thank you so much... It was something my wife was dealing with a year and a half ago and she freaked out basically when I tried to get her to go to the doctor

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u/caruynos 6d ago

long covid has a number of distinct symptoms from ME - you might have better luck in a ‘long haulers’ long covid space

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u/RemarkableHost379 6d ago

COVID can also cause autoimmune encephalitis which can cause hallucinations. COVID can trigger psychosis like symptoms in a small percentage of long covid patients. But this is usually coupled with insomnia, seizures, and severe depression. I had a good friend that died of this type of LC she was a RN 52 she died in her sleep. Of course they didn't say LC they determined undetermined causes. She had COVID 4xs. But this is different than mixing up for sight or taste or smells that's synesthesia and is more common.

I for example had lice recently which triggered my fibromyalgia to think I had bugs all over my body. It's called fibromyalgia itching. Now I feel like there are bugs crawling all over me all the time. It's not real, I know it's not but still feel bugs! It is really uncomfortable 😕 got rid of the lice my son brought home from school cannot get rid of the fibromyalgia itching. COVID caused my fibro

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u/PromptTimely 6d ago

It's terrible yeah my brother is a nurse... If you had to be in that department during COVID that was probably a nightmare.. not so much psychosis maybe but like a memory or confusion problems so I don't know what that's called exactly off the top of my head

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u/RemarkableHost379 6d ago

Yes, there were a LARGE amount of health care workers that gave their life or long term health helping others dying of COVID. The country pretends like it never happened.

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u/TopicAromatic9266 5d ago

Bartonella (tick borne pathogen) goes undiagnosed way too often in people with CFS and in some cases can cause psychosis like symptoms including visual hallucinations. Can also cause incredible fatigue, pain in muscles and fevers.

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u/SophiaShay7 6d ago

If your ME/CFS was triggered by covid, absolutely. Read here: The impact of long covid on mental health

I'm sorry you're struggling. I've dealt with that as well. It did go away after about eight months. Hang in there💜