How to cope with disabling brain symptoms?

[Rufous McKinney]

my psych told me the prescribe it only to alcoholics.

You should be able to get this prescribed by your Primary Care Doctor, its not a psych drug in my opinion. I have to pay for it myself, my insurance won't cover compounded (reducing the 50 mg of Nalthrexone down to 3.5 mgs low dose). I could try filing a formal appeal for them to cover it, but haven't initiated that (sounds unpleasant).

I"m dealing with pretty intense cognitive symptoms also, and awful blurred vision and eye fatigue.

Your distress about all this seems totally understandable. Its just really hard and beating yourself up about it isn't helpful. And this isn't demented, or other more famous forms of cognitive. It just feels like the energy required to think, got zapped. So I start to think, or ponder something, but quickly just replace that with a sigh, and this is too much, stop now, whatever it is.

I don't read much, or for long. Too tiring. And the eye thing. Oh brother- my vision is seriously blurred. So it just hurts to see quite often. Driving- I go a few blocks. Outside is- intense.

I seem to cope by reducing my expectations and waiting for that occasional day when- I feel less awful. They happen now and then. I can no longer feed the ego.

Sometimes this is mostly a giant management challenge and attitude adjustment. Staying in the zone, not overdoing, taking breaks and resting often. Not trying to do hard things. Deciding thats Ok. Sure its disappointing, not the dream, not the plan.

I could go full tragic and dismay over my condition. I just really try not to do so often. And sometimes I think this is an energy issue response as well. I just don't have the energy to sob in dismay, or put alot of fuel on the woe.

 

[Stretched]

@talkinghead

I’ve had 2 concussions in the last 6 months on top of long time CFS... . I’ll look up and post a couple of pertinent references you might find useful.

Here are a few relatively newer articles from my research journals related to your concerns and potential brain Involvement. You might find these helpful in resetting your perspective of getting relief. Good luck and please keep us apprised.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease or Disturbed Homeostasis due to Focal Inflammation in the Hypothalamus? - PubMed - NCBI
For Pub Med abstract
https://www.ncbi.nlm.nih.gov/pubmed/30076265

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. - PubMed - NCBI
https://jamanetwork.com/journals/jama/fullarticle/2737854

Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study. - PubMed - NCBI
https://www.ncbi.nlm.nih.gov/pubmed/24665088

Clinical Trial to Investigate CT38 in the Treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - ICH GCP - Clinical Trials Registry
https://ichgcp.net/clinical-trials-registry/NCT03613129

Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonan... - PubMed - NCBI
https://www.ncbi.nlm.nih.gov/pubmed/30617782

Front. Pharmacol., 29 May 2018 | https://doi.org/10.3389/fphar.2018.00548 (https://doi.org/10.3389/fphar.2018.00548)
(https://loop.frontiersin.org/people/304789/overview)

Potential of Natural Products in (https://loop.frontiersin.org/people/18023/overview)

Attenuation of Alzheimer's - possibly Related MECFS Disease (https://loop.frontiersin.org/people/402676/overview)

See related: https://www.healthrising.org/blog/2...ic-fatigue-syndrome-me-cfs-drug-trial-begins/ It discusses how stress and the immune system works to sustain this illness. Also, at hand, google: July 5, 2019 Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome Anthony L. Komaroff, MD1

 

[Stretched]

I don't read much, or for long. Too tiring. And the eye thing. Oh brother- my vision is seriously blurred. So it just hurts to see quite often. Driving- I go a few blocks. Outside is- intense.

This started with me in the last year, on top of usual symptoms. It’s especially stressed in the evenings, lying back on the sofa reading, then watching TV. I get to bed and my head pulsates, sometimes with pain behind the eyes. It adds to the time to sleep. Also, driving will do the same thing and add to cognitive issues. Does this sound familiar?

 

[Rufous McKinney]

Does this sound familiar?

Yes. I seem to be able to watch some TV without too much grief..thank goodness. Magazines seem particularly difficult, the print, the shiny paper.

My eyes feel squeezed. But everything is swelling around this whole area- so no wonder.