Are these Neurological & Neuro-Psychiatric symptoms consistent with ME/CFS?

[SmokinJoeFraz93]

If you are unable to read the opening part, please scroll down where you’ll find my symptoms in bullet points. They’re split in two sections; Symptoms that first appeared when I became unwell with ME/CFS and symptoms I have to this present day.

When I got diagnosed with ME/CFS in 2015, I put all my symptoms under the umbrella of ME/CFS, whether neurological or physical. However, after doing research and looking into my neurological and psychological state, something isn’t quite adding up, unless of course - the symptoms I am about to mention are indeed that of ME/CFS.

The symptoms I first started having were rapid neurological/behavioral changes accompanied by muscle fatigue, dizziness upon standing and muscle jerks. THAT IS IT. Other symptoms followed later.

I had started boxing (sparring three times a week) in the hope to get fit and shed some weight before I started suffering intense muscle fatigue throughout my entire body upon exertion and doing simple tasks such as combing my hair or beard. (I think I’ve found an answer for my muscle fatigue through looking at my genetics, which I’ll save for a different day, as it concerns a different pathology.)

FIRST SYMPTOMS THAT APPEARED:

. Extreme fear of going boxing and sparring to the point of crying

. self isolation

. Couldn’t make eye contact without getting angry

. Anorexia-like behaviors / eating at set times

. Confusion - Simple tasks such as doing my shopping list would be highly stressful and extremely agitated. I also stopped telling my girlfriend at the time that I loved her as I became so disconnected that I became confused as to how I felt or what love was.

. Religious paranoia - I was a devout Christian, and had incredible faith in god. But I rapidly became fearful that god was talking to me through scripture, TV or even people, which would make my conscience heightened, which in turn made me confused to the point where I thought I was going to get admitted to a psych ward/sectioned.

. Muscle twitches/jerks

SYMPTOMS NOW;

. Short term memory loss - (Unable to recollect what I’ve just learnt or read - always asking for people to repeat themselves because I hadn’t heard clearly or my brain hasn’t registered what they’ve said).

. Unable to spell words or say phrases that I could perform much easier previously.

. Paranoia - I don’t trust ANYONE (family included); I worry that the government are watching me so that they can take my disability benefit away; (Paranoia doesn’t occur every day, but it’s often and has become more regular since the onset of these neurological symptoms).

I don’t know whether this symptom comes under paranoia or not, but I feel my younger brother is going to die, and it’s inevitable that it’s going to happen and no human being can change it. Every time my mother phones me, my body reacts in dread that I’m going to hear that my brother has died.

. Autisitic-like behaviors - Diagnosis was questionable before, but now I’m expressing ASD symptoms such as routines, obsessed with saving the little money I do have (parting with money scares me), rigid interests and lack of eye contact to the point where I’m wearing sunglasses in public.

. Emotional unstable - One minute I want ’this’, the next I want ‘that’. One might use the term “confused”.

. Unable to do simple math/bills which I could do before.

. Forgetting my line of thought.

. Miss-reading words.

. Occasional de-ja-vu.

. Irritability and snap quickly (especially when shopping or when hearing annoying sounds such as people talking or the noise of a door shutting.

. Night terrors (I’m unaware of them) & talking in my sleep - My partner says Im always talking in my sleep. She’s actually convinced that I’m awake, but I ain’t awake.

. Easily startled.

. Clumsiness.

. Hearing sounds that aren’t there - I’ll hear my phone notification when a constant noise is present such as a hood of a cooker, but when I look at my phone, there’s no notification; Hearing my cat meow, but when I check there’s no cat there.

I don’t know whether autonomic functions are classed as neurological, but I’ll mention this symptom anyway;

. Lack of sweat - Ain't sweat in nearly five years under any circumstances.


I‘d be grateful if anyone had any input. Thanks.

 

[andyguitar]

I don’t know whether this symptom comes under paranoia or not, but I feel my younger brother is going to die, and it’s inevitable that it’s going to happen and no human being can change it. Every time my mother phones me, my body reacts in dread that I’m going to hear that my brother has died.

Not paranoia @SmokinJoeFraz93 it's what is sometimes called 'Anxiety Neurosis'. Unpleasant but not rare and not a sign you are going mad! Bit like a compulsion really. OCD you know about that sort of thing? As for the other stuff....... we live in difficult times so bad dreams and the rest of it are something that many,many people are getting.

 

[Judee]

I think these things start out as some kind of exposure which triggers an unexpected physical response which we then associate with a lot of life events. (I actually think that's where most panic attacks originate--associating life events with a time when our physical equilibrium is knocked off balance.)

The way you describe it, the boxing situation sounds like it could have been the trigger. I would think about what types of chemical exposure you could have experienced while doing that (and/or did you experience any illness during that time that would have physically weakened you and made you feel defenseless). MCS can cause a lot (not all ) of what you describe. Do you bring your equipment home? That might be why you are still experiencing it even if not going to the gym.

Also did you box with anyone else? (Sorry, if that's what you meant by "sparring.") Could you have sustained a head injury?

If you can identify the trigger(s) and eliminate it so that you see it's associations, the anxiety will diminish. That's what happened in my instance. Three different counsellors telling me it was all in my head didn't help me like realizing that it was mostly happening first in my body.

 

[pattismith]

@SmokinJoeFraz93

I think mental issues and brain dysfunction are secondary to our autonomic nervous system dysfunction.

You have some evidence of dysautonomia (no sweating). Did you get a complete autonomic system evaluation?

 

[SmokinJoeFraz93]

Not paranoia @SmokinJoeFraz93 it's what is sometimes called 'Anxiety Neurosis'. Unpleasant but not rare and not a sign you are going mad! Bit like a compulsion really. OCD you know about that sort of thing? As for the other stuff....... we live in difficult times so bad dreams and the rest of it are something that many,many people are getting.

That makes a lot of sense, as a quick google search explained these behaviours, as well as a fear of death (which I have also). Thanks for your input

 

[SmokinJoeFraz93]

@SmokinJoeFraz93


You have some evidence of dysautonomia (no sweating). Did you get a complete autonomic system evaluation?

I haven’t had any tests done relating to the ANS, neither have I had any brain scans or any comprehensive testing apart from the standard testing the NHS provides such as the usual blood work that GP’s are supposed to do.

When I saw a neurologist, she did an examination (looking into my eyes, tapping my joints and pressing against my arms), which she concluded that early childhood trauma had caused my symptoms - however, I didn’t even get a chance to explain my symptoms.

 

[pattismith]

I haven’t had any tests done relating to the ANS, neither have I had any brain scans or any comprehensive testing apart from the standard testing the NHS provides such as the usual blood work that GP’s are supposed to do.

When I saw a neurologist, she did an examination (looking into my eyes, tapping my joints and pressing against my arms), which she concluded that early childhood trauma had caused my symptoms - however, I didn’t even get a chance to explain my symptoms.

you need a complete autonomic neurological evaluation, with a specialist of the autonomic nervous system.

However, if you want to get access to one, you have to insist on your autonomic dysfunction and not on your brain/mental dysfunction.

Autonomic nervous system controls heart rate, blood pressure, vascular constriction/dilation, gut and stomach contractions/relaxation, bladder and urine tract contraction/relaxation, salivary glands, lacrymal glands, etc.

So if you want to obtain the interest of an autonomic specialist, you will talk about your relevant symptoms.

Several testing can be done at home. The easier to do is the Finger Wrinkling Test, you just need hot water and a clock to do it.

 

[Learner1]

@SmokinJoeFraz93 It might also be wise to look into autoimmune encephalitis.

https://www.encephalitis.info/Pages/Category/autoimmune-encephalitis

 

[PatJ]

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List includes many of the mood and cognitive symptoms you've listed.

I've found three main causes for my feelings of anxiety and fear: orthostatic intolerance, low blood sugar, and low potassium. Low potassium has caused the strangest fears such as fear of closing my eyes and fear of darkness.

Low zinc was also a contributor to low mood but not nearly as significant as the other three.

 

[lenora]

I'm a victim of autoimmune encephalitis. It was finally diagnosed in January after my 7th hospitalization in about as many months. This is a realtively new illness, thus you'll find information all over the map.

One of the main ways you're diagnosed is via psychiatric testing numerous times. Of course it helps if you've already been seeing one. The reason for this is not as obvious as it seems: They're not trying to prove that you're a nut, but are trying to find the region of the brain the most affected by the illness. In my case, it points to my heart and indeed, I've had a number of problems, the latest being congestive heart failure where my oxygen level was below 50. That's low and I couldn't talk or breathe and became unconscious. Once I came to, I was in good shape.

Now when I was in in January, things had taken a far more serious route. I nearly died and of course they absolutely had to get to the bottom of it. I'm a reader, but I'll never know what made me read a book called 'Brain on Fire'.....trust me, you don't have to have much of a brain to folllow it. However, for some reason I did read it and, after I was released from the hosp., I also watched on Netflix, the movie by the same name. Save yourself some time by just reading the book. It's a fast read and gives you a peek into what it's like to be suffering the neurologically based version of this illness. I understand that if I go in again, I'll be treated exactly like the young lady in the book was treated. It makes you realize the importance of a good Diagnostician....and one as soon as possible.

The problem with this diagnosis is that you can have seizures brought on by the lack of certain electrolytes such as water (too much in my case) mg. and calcium. There may be other things they're still trying to work out for me. In any event, i was released from the hospital with no guidance towards electrolytes, and thank goodness my daughter from CA came and was able to help me establish a routine with Gatorade. It's pretty awful stuff (if you aren't used to sugar), thus I went onto other things. I should tell you that my l. eye had been drooping and giving me trouble for quite some time, and my l. leg gave out the day my husband noticed I was having seizures. This is NOT to say that you'll have these things happen to you, but I would suggest that you get to the bottom of things and let me know what you find out. Don't worry about the neurolgocal "tests" they're only to provide a bottom line for where your brain is inflamed (shall we say). I wish you luck and hope the future holds many happy and healthy days for you. You may want to see a cardiologist...i now have 5 stents. Again, not saying that you have problems in that regard, but if you're at all older we are at risk. I don't ever want to repeat my January experience.

I should tell you that I have been hospitalized for 6 times in the past 8 mos. Each time was a serious matter in its own rite, but didn't fall under any umbrella. I find that hard to believe, and I'm still seeing or at least talking to doctors. It's tough; but your tougher. Yours, Lenora.

 

[SmokinJoeFraz93]

I think these things start out as some kind of exposure which triggers an unexpected physical response which we then associate with a lot of life events. (I actually think that's where most panic attacks originate--associating life events with a time when our physical equilibrium is knocked off balance.)

The way you describe it, the boxing situation sounds like it could have been the trigger. I would think about what types of chemical exposure you could have experienced while doing that (and/or did you experience any illness during that time that would have physically weakened you and made you feel defenseless). MCS can cause a lot (not all ) of what you describe. Do you bring your equipment home? That might be why you are still experiencing it even if not going to the gym.

Also did you box with anyone else? (Sorry, if that's what you meant by "sparring.") Could you have sustained a head injury?

If you can identify the trigger(s) and eliminate it so that you see it's associations, the anxiety will diminish. That's what happened in my instance. Three different counsellors telling me it was all in my head didn't help me like realizing that it was mostly happening first in my body.

Hi, I thought about brain injury from boxing. I would spar 3 times a week with and without a head guard. Full contact punching was a normal thing within the gym, with most of the time we would have heavy sparring sessions (toe-to-toe punching).

In terms of MCS, I do/did have this which I think was caused by antidepressant withdrawal from Effexor (Venlafaxine), which has messed my sensory systems up. (I can’t tolerate light, sound, motion or smell without the help of THC from cannabis, as I won’t go down the klonopin and GABA agonist routes).

Thanks for messaging me. I hope you are well.