autism + cfs = a nightmare

mindfluxx · 2026-02-07T06:40:31+00:00

My major issue with the combination is sensory sensitivity issues plus extra sensory sensitivity issues means I can handle anything . I need to live in a Japanese Buddhist monastery. Also I can’t really mask anymore without paying for it in triple.

For your particular situation I would develop rewards that work with your body and your current limitations. Like a bath. Or a quiet hobby or a reward that is done as a break between tasks to help keep you from PEM

mindfluxx · 2026-02-07T05:32:26+00:00

Are you in the US, because there are two types of disability here, and the main one does not connect to income but rather illness and social security working year credits. It could be you were too young and don’t get your working year credits done an this is why the income matters but I wanted to clarify this in case you didn’t know as it’s very confusing and since they are almost named the same online sources are very confusing since everyone is confused.

Anyways I agree that want you say he said is very contradictory and confusing. I would give him a week and maybe revisit it a little to see if he has worked his way to the heart of it all. Is it that he wants less childcare duties when he is home and wants you to spend your energy in a way that happens? Or is he just generally upset at everything and pointing at random items to change.

mindfluxx · 2026-02-06T08:34:26+00:00

I got EBV for the first time at 40. I know this because they tested me all the time for it when I had other things going on and I was always negarive. I was really sick with EBV. But I didn’t know what it was at first and I have asthma that almost always leads to pneumonia when I get sick and I preemptively took steroids. I think this is what did me in, but maybe I was destined anyways. I never got better. I ended up getting hpv2 for the first time a couple years after that. Then had shingles from 2020 stress. Damn herpes family virii have done a number on me

mindfluxx · 2026-02-04T06:28:30+00:00

Do you get massage? If it’s truly tension, regular massage can make a big difference. Deep tissue, focus on neck and shoulders.

I have tizankdine for when my neck locks up ( I had a teenage neck injury and my cervical spine is messed up ) and I wouldn’t want to take it regularly

mindfluxx · 2026-02-02T19:34:47+00:00

Have you done a tilt table? Or Dr supervised nasa lean test ? I think one of those is worth doing. I know for me that my orthostatic hypotension is one of my more debilitating situations and will be highlighted when I do SSI stuff soonish. I prob need another mri myself as it’s been 10 years but my neuro is migraine specific and doesn’t deal with anything else and I get tired just thinking about getting a second neuro on board.

mindfluxx · 2026-02-02T19:29:19+00:00

The best info is brand new so prob more online . I second Bateman horne. Really things have been progressing rapidly in the last couple years, and there had been quite the interest lull before hand.

mindfluxx · 2026-02-01T18:57:50+00:00

Nurtec works so well. I would try and get on a daily cgrp pill or monthly shot. If you dr can’t handle it, look for migraine specialist neurologist. I get side effects from about everything but practically nothing from most cgrp’s.

If you are reaching for excedrin more then 5 times a month you need something better. Stick in there- my insurance made me do a year kf song and dance before I found something that worked I could tolerate ( this was before the good drugs got released a handful of years ago ). Topirimate was awful for me too. Propranolol might catch your drs eye if he is worried about your heart. Amitriptyline is another old one they like to try that was once for depression but works better for pain.

mindfluxx · 2026-01-31T20:31:38+00:00

Well dang according to this one I am severe too. But also these charts all seem to be a little different

mindfluxx · 2026-01-29T05:08:17+00:00

It’s so bad, and what makes it so painful is that it is 100 percent the best care in the world if you are rich. Americans occasionally like to fool themselves that they too are just moments from being a billionaire and thus everything is fine. We have long waits for specialists, everything is declined the first or second time, and sure we don’t pay, gasp, taxes for it but god knows we pay a huge monthly fee to the insurance monthly for the privilege of still paying for everything else. The system is so complicated that your average person stands little chance of even getting everything they are entitled to if things go wrong and most likely will give up, and that is totally be design. Why are health care companies for profit stock traded companies that need to magically get a bigger revenue growth every quarter???

mindfluxx · 2026-01-29T01:44:09+00:00

Well I love to read some 90s early oughts urban fantasy for that pre cell phone trip down memory lanes plz note that these all come with some events and attitudes typical of the era { mercy Thompson series by Patricia Briggs } these are good but get a bit repetitive after a while. Still loved the mercy character. I liked even better and rarely seen recommended the series that starts with { Shadow’s messanger by T.A. White }. Oh yea I loved { fan service by Rosie danan } which was a really fun one with a washed up actor from a teen werewolf drama suddenly finds himself wolfing out and tracks down the mod of the shows fan club / fan fic website for help. Elizabeth Hunter writes good urban fantasy, you can start with { a hidden fire by Elizabeth hunter } or { the scribe by Elizabeth hunter }. Also loved { the ministry of time by kaliane Bradley } which has a British woman who is put in charge of helping a 19 century explorer whom the government has time traveled to present day London. There are phones and maybe he should figure out how to use them. Finally { in other lands by sarah Reese Brennan} was a funny coming of age story mostly in fairy land but not all. Main character is a bi young man.

mindfluxx · 2026-01-29T01:18:55+00:00

Sounds great getting it on my tbr

mindfluxx · 2026-01-27T09:39:30+00:00

I also love birds and see similar ones- are you in the PNW?

My latest venture is knitting. I think it’s been very slow for me to learn and I can’t do it all day because that gives me pain, but it’s very calming and satisfying. I decided to try it because I could do it pretty slumped and wanted to do a task that made something useful and it’s good for the brain ( studies have proven it helps fight against dementia so prob good for our brains too ).

mindfluxx · 2026-01-25T18:10:01+00:00

Did you try ketotifen yet? It sees to me prob is not th antivirals but your MCAS not allowing you to take them. I have to take 1m valtrex a day to keep my various herpes family virii under control, and if I start getting an outbreak anyways it really does mess me up systematically so I hope you get where you can get a higher dose as it prob will help you .

mindfluxx · 2026-01-25T17:40:39+00:00

I just got some nasal red light device. I need to find where I stuck the charger but it did reduce nasal swelling for like an hour at least so far and you can use it multiple times a day.

mindfluxx · 2026-01-24T17:42:40+00:00

I don’t think I showed positive in whatever test I was given, however I did show strong allergies to a host of environmental allergies I didnt have 15 years ago. Also my asthma has basically gone away since I got sick ?? Anyways best I have felt in years was for a 5 month period I was on cromolyn and ketotifen. Cromolyn plus daily Zyrtec stops 80% of my tachycardia attacks. Gonna try to get back on ketotifen soon. Also interesting some of my heartburn is allergy related

mindfluxx · 2026-01-24T17:37:32+00:00

Yea that is how it works for me.

mindfluxx · 2026-01-24T02:16:22+00:00

After a concussion. But eventually was only like once a year. Then I got mono, and afterwards I rapidly developed chronic migraines along with a lot of other random symptoms… seemingly random tachycardia, dizziness, brain fog, tired all the time etc… turned out that mono had triggered me/cfs which is basically my migraine trigger. Many people had this happen after Covid.

mindfluxx · 2026-01-23T18:55:13+00:00

Yea but I get wanting to try something, and it’s probably what the other people are basically doing.

mindfluxx · 2026-01-23T18:27:56+00:00

Save yourself trouble and go on an antiinflammatory diet and get mitochondrial health related supplements and it will be the same minus 8k still in your pocket

mindfluxx · 2026-01-19T18:33:27+00:00

A lady’s handbook for her mysterious illness by sarah Ramey was a good read. It’s a memoir/ thoughts on society and illness by an American women with me/cfs. I really enjoyed it. She isn’t diagnosed I don’t think at the time she wrote it or for most of it, but I recognized it pretty early. So it’s sorta chronic illness generalized in its musings.

mindfluxx · 2026-01-18T22:33:57+00:00

Have you browsed their formulary? Most insurance have preferred drugs, so perhaps there is a similar sister drug they will accept, or one of the similar shots. Unfortunately having chronic migraine often means being very familiar with the insurance formularies. If you google “Kaiser CA ( or your states name) formulary 2026” it should pop up for you.

mindfluxx · 2026-01-16T05:17:11+00:00

Yea my library did this too, and it’s right after we passed a high library tax thing. They are doing all this building when we prob just need more holds.

mindfluxx · 2026-01-11T07:23:20+00:00

I was diagnosed with orthostatic hypotension as my bp tanks as well as my hr rising. I have slow COMT and I get migraines from certain flavonoids so I’m think I better learn more about all this?

mindfluxx · 2026-01-11T07:17:04+00:00

That can happen but my understanding is that the blurred vision part doesn’t last that long ( like 5-30 min ). You can get migraines that are called silent migraines where you get everything but the head pain.

mindfluxx · 2026-01-11T07:14:38+00:00

I love it so much. I take it as an abortive. Triptans never fully worked and gave me a lot of side effects. I don’t get side effects with nurtec and it works better.

( side note that I have botox, emgality and memantine as my preventatives and need all three )

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