Eye/Brain severe fatigue and pain.

Chicky

Member
I am new here, and saw a reference to muscles in the neck/spine/brain reading here, but can'f find it. It was about how severe muscle or nerve weakness can cause such severe fatigue you can not hold your head upright, you have to lay your head down. When I saw this it stunned me, as it describes what I thought was severe cognitive fatigue from brain abnormalities that effect my eyes/brain. Instead of lying completely flat and resting, I tried trying to support my neck area, thus supporting my head, by just leaning back, still sitting up, but with a soft neck collar. To my surprise that helped alot. All this time (years) I thought this severe fatigue was mainly from my eyes, but as I sit here now writing this post, I can still use my eyes, as long as I keep my head/neck area supported while lying back on support pillows in bed. Anyone with input, info welcome. Getting answers for medical issues has been so frustrating, I know many here are also looking for answers too.
 

Carl#1

Member
It could be **This**

Just a guess though. It does seem to be a pre-occupation of some people on Corts other sister forum PR.

However I suspect that the problem originates with protein digestion and breakdown. I have a similar problem but it affected my skin healing where wounds would not form scabs and would very slowly grow out as skin was replaced. Doctors would tell me that it was because I was T1 diabetic but I very much doubt that because if I consumed amino acids, which require no breakdown, wounds would form scabs and heal much better if not fairly slowly. That could be due to the length of time I have been diabetic and also my kidney energy (nervous system) is also most likely affecting things and slowing healing.

Protein causes problems with people with CFS because of their Increased Digestive Permeability aka (incorrectly) "Leaky gut". The immune system reaction against large food molecules and subsequent cytokine release affects energy production and can cause activation of viruses. Everything is linked to IDP which is being researched in the UK ATM. I doubt that they will work it out. I have known the cause for years (2014) which was when that research began.
 

dejurgen

Well-Known Member
Instead of lying completely flat and resting, I tried trying to support my neck area, thus supporting my head, by just leaning back, still sitting up, but with a soft neck collar. To my surprise that helped alot. All this time (years) I thought this severe fatigue was mainly from my eyes, but as I sit here now writing this post, I can still use my eyes, as long as I keep my head/neck area supported while lying back on support pillows in bed.
A potential explanation is that, while in that position, you "stretch" your spinal cord. Your spinal cord is attached to the bag of spinal fluid that applies a certain pressure to the brain. Changing your neck and spine position creates a different amount of pressure in that bag IMO. And cerebral brain fluid pressure should help control blood flow in the brain IMO. It's a complex relationship that can affect both how much blood flows towards the brain and how easily it flows back. That also determines how much blood pools in the brain. Anyhow, different blood flow can "create" different states of "consciousness", mental performance and quality of life in ME.

Another possible option is that this position curves your back a little bit more. That is something only you can tell if you have good observation skills. You should feel your mattress push a little bit more against your back if it is more curved. My physical therapist says that a more curved back (like old people have) improves blood flow a bit. In order to check if that is at play, you can stand upright and then slowly bend forward with your arms just hanging there. Like you would make an arc to pick a parcel lying half a meter in front of you on the ground. Don't have to go that deep however! Just stay within what is comfortable. Also make sure you can do that safely. It's no good if you faint and fall or stumble and bump your head obviously. Any such exercise or test may be tricky for people with EDS too. So check your condition and consult your physician when needed first!

If that is the cause, you should feel a "slight piece of release and comfort" in your head after about 10 seconds. Then you might consider going to a good physical therapist and ask him to help you with massage therapy and exercises to reduce the problem.
 

Chicky

Member
Thank you both for your replies. Carl, I think your link is the one I had read but could not find. I did have a bad auto accident years ago, and I was knocked clean off my feet snow skiing by an out of control skier also years ago, came down right on my behind, on an icy slope. My tailbone was broken in two places I came down so hard. My diagnosis has been so hard to pin down, and I worked in a hospital 30 years full time. Also years ago very sick, in the hospital 2 weeks, from a viral infection, and a chronically low Wbc count, in the 2's. What took me out of my job was one day out of the blue, looking at my computer, I could not process any words I was looking at, could not write either. Something in my brain broke (?micro strokes) Doctors 10 years ago did not either have an answer, or the usual, I am just depressed, anxious. I ended up on disability. The fatigue from simple exertion overwhelming. Chemically sensitive, very light/sound sensitive. Vertigo.balance issues. I taught myself computer skills again, very slowly, years later. using a tablet is easier since the keyboard is right on the screen. It reduces eye movements up/down/side to side, which also helps reduce fatigue. I noticed quite by accident, my pupils are very slow responders. They are equal in that, but I have nearly fainted several times,severe nausea, just getting out of bed in the morning, having to get up in a dark room until my pupils reduced in size so as to not over-stimulate my nervous system. I have gone on too long. Still searching for answers, but the neck pillow collar holding my head up is still helping, I'm thankful!
 

dejurgen

Well-Known Member
Something in my brain broke (?micro strokes)
Not needed for those symptoms. I had things very similar. I also with it temporary lost my ability to speak and had to relearn basic skills like getting up from a chair or walking around the corner of my bed.

The fatigue from simple exertion overwhelming.
Says plenty. With it, your brain likely was utterly exhausted. And with that, your brain was in an entirely different state then when it was like you learned those skills. You in a sense had learned skills for a totally different type of brain. It's like they say: you remember things best in the same state as you learned them.

A good example is the drunken student that needs to drink a few beers before going to an exam in order to remember anything he studied as he never was sober when learning the course. Another example is a person that can only play darts well at the pub as he learned it when drunk.

So in essence, your skills learned when healthy are a total misfit for your brain when having a bad spell of ME. It's like having learned to ride a bicycle and suddenly all you have is a one wheel circus monocycle. Your previously learned skills wont get you very far.
 

Issie

Well-Known Member
I have had two TIAs. Both affected me. Docs will say they don't cause damage. but I can say for certain that they do. It's been years since I had them and the damage they caused is still there, though better. I was in my early 40s when this happened. Blood flow issues part of the problem. Before I got my POTS, EDS diagnosis. You may look into both these things.
 

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