Neurological basis for CFS?

[Derekthecat]

Hi all,

I have been receiving treatment for CFS for a relatively short time (7 months) and although there is a certain amount of mild fatigue I don't generally have muscle pain and FM. The main symptoms for me are brain-fog, confusion, amnesia and a "buzzing" feeling in my head which is very similar to severe jet-lag. It's very scary, I develop a stammer when it's very intense, get my words back to front, forget people's names and lose my way in familiar places. The GP has assured me it's not a neurological problem and has diagnosed with "Post Viral Fatigue".

I'm wondering if anyone else has a similar spread of symptoms who could share their experiences - and possibly any supplement protocols which have helped. So far the supplements which are supposed to help with the neurological side of CFS (such as tocotrienols and co-eQ10) have done nothing but intensify the problem. - Of course that could be a coincidental deterioration of my symptoms.

I'd love to hear from anyone who's gone through anything similar. - as I feel like I'm in a slightly different realm of symptoms to others on here.
Thanks
x

 

[sarah darwins]

Do you feel able to go back to your GP and push for a neuro referral, Derek? That doesn't sound much like post-viral fatigue. Why is your GP so sure it's not neurological?

 

[Derekthecat]

I do have a neuro referral pending, but I've been told it's a precaution and that most of my symptoms are classic CFS. Symptoms are triggered by exertion, and accompanied by some fatigue which at times is intense but that's not my worst symptom by far.

 

[sarah darwins]

I do have a neuro referral pending, but I've been told it's a precaution and that most of my symptoms are classic CFS. Symptoms are triggered by exertion, and accompanied by some fatigue which at times is intense but that's not my worst symptom by far.

You hadn't mentioned the exertion trigger, which is a bit more typical. But it's good to check out as many other things as possible, especially before you get saddled with an unhelpful 'cfs' label. Glad you've got the referral.

 

[Large Donner]

Hi all,

The GP has assured me it's not a neurological problem and has diagnosed with "Post Viral Fatigue".

I do have a neuro referral pending, but I've been told it's a precaution and that most of my symptoms are classic CFS

Your GP has contradicted himself then, as both CFS and PVFS are listed as neurological. If he doesn't mean post viral fatigue syndrome and instead he means simple fatigue after a virus that will soon resolve itself he cant then say the symptoms are classic CFS.

 

[Derekthecat]

Your GP has contradicted himself then, as both CFS and PVFS are listed as neurological. If he doesn't mean post viral fatigue syndrome and instead he means simple fatigue after a virus that will soon resolve itself he cant then say the symptoms are classic CFS.

Totally agree. I have to admit my brain fog means I am probably writing gobblidigook, and not relaying properly what has actually been said and by who. Basically they're slightly puzzled by the weighting towards "head" as opposed to body symptoms - but have given me a diagnosis for CFS anyway. The post viral comment I think was a platitude intended to give me a bit of hope it isn't permanent. I am pending a few referrals so it's early days but I just wondered if anyone had experienced a similar balance of symptoms.

 

[minkeygirl]

Neuro crap is common. I have only one functioning brain cell Earl. When the fog first got bad I wondered how I'd live with it. I've adapted. That is almost easy compared to the significant cognitive deficits I deal with.

You will find everyone has a different set of symptoms. Put 100 of us in a room and everyone will have different problems.

 

[GhostGum]

If your symptoms are more so cognitive/neurological related then it is certainly worth investigating the B12/methylation section of the forum and looking at, probably a genetic test as well. I wish I had discovered this in the initial stages of my condition, was over 10 years before looking into it.

 

[Maria1]

I don't generally have muscle pain and FM. The main symptoms for me are brain-fog, confusion, amnesia and a "buzzing" feeling in my head which is very similar to severe jet-lag. It's very scary, I develop a stammer when it's very intense, get my words back to front, forget people's names and lose my way in familiar places.
Thanks
x

I had those symptoms too and wanted to reply as I recognise exactly that description. My mental symptoms were exacerbated by physical or mental exertion and felt more disabling than the physical symptoms, causing me to stop working in a mentally demanding job but one that I really quite enjoyed. My symptoms are so much better of late, after 3 years of being pretty constant.

In fact, the brain symptoms disappear now completely at times and I feel totally normal which feels like magic. What you describe as 'buzzing' felt to me like fatigue spaghetti being constantly pulled through holes in my brain (?) So a buzz, but a very particular kind of buzz.

For me, it has taken well over a year of iron and vitamin d supplementation, and treatment for an underactive thyroid (have hashimotos); I think I'm really feeling an improvement now but it has been slow, slow work. I had a borderline underactive thyroid for years that was never picked up. Neither was the anaemia.

I recently found an endocrinologist who treats the thyroid based on symptoms rather than just blood tests; this means I'm on a much higher dose of levothyroxine than previous docs would allow. I'm riding on a wave of new found energy and mental clarity at the moment but tending to overdo it a bit as well.

I also take coq10, d ribose, magnesium, high dose b12 and I did supplement folate for a while as I was low in that.

I really sympathise as I hated the brain stuff. One of my low points was getting lost driving to my local garage, had to phone the to direct me there, then losing my car keys there and feeling so stupid. I probably shouldn't have been driving and I had just reversed into a pillar. I lost the ability to have conversations with anybody and felt so useless. Just this last few weeks, having normal conversations again, when everything flows and you don't even notice the words coming out of your mouth... Don't give up hope, things can and will get better.

I'm having a very tired day today as I've been doing way too much so I hope this post makes some sense. I'm not one for posting, even on a good day! One of the worst things for me to trigger a crash is writing, so it's something I still am terribly wary of.

All the best.

 

[soofke]

Neuro crap is common. I have only one functioning brain cell Earl.

and it's so precious to you that you námed it? ;D

it can be both neurological and (post) viral, only thing I know to test it is only sold in Europe and I guess falls in the "snake oil" category because it's....well....snake oil, or some kind of liquid

edit: oops & especially for sarah and her smartass (but those are often right) deleted reply : https://www.davidshealthcheck.com/en/crotalus/ can't find anything longer in English sorrysarah

 

[Derekthecat]

I had those symptoms too and wanted to reply as I recognise exactly that description. My mental symptoms were exacerbated by physical or mental exertion and felt more disabling than the physical symptoms, causing me to stop working in a mentally demanding job but one that I really quite enjoyed. My symptoms are so much better of late, after 3 years of being pretty constant.

In fact, the brain symptoms disappear now completely at times and I feel totally normal which feels like magic. What you describe as 'buzzing' felt to me like fatigue spaghetti being constantly pulled through holes in my brain (?) So a buzz, but a very particular kind of buzz.

For me, it has taken well over a year of iron and vitamin d supplementation, and treatment for an underactive thyroid (have hashimotos); I think I'm really feeling an improvement now but it has been slow, slow work. I had a borderline underactive thyroid for years that was never picked up. Neither was the anaemia.

I recently found an endocrinologist who treats the thyroid based on symptoms rather than just blood tests; this means I'm on a much higher dose of levothyroxine than previous docs would allow. I'm riding on a wave of new found energy and mental clarity at the moment but tending to overdo it a bit as well.

I also take coq10, d ribose, magnesium, high dose b12 and I did supplement folate for a while as I was low in that.

I really sympathise as I hated the brain stuff. One of my low points was getting lost driving to my local garage, had to phone the to direct me there, then losing my car keys there and feeling so stupid. I probably shouldn't have been driving and I had just reversed into a pillar. I lost the ability to have conversations with anybody and felt so useless. Just this last few weeks, having normal conversations again, when everything flows and you don't even notice the words coming out of your mouth... Don't give up hope, things can and will get better.

I'm having a very tired day today as I've been doing way too much so I hope this post makes some sense. I'm not one for posting, even on a good day! One of the worst things for me to trigger a crash is writing, so it's something I still am terribly wary of.

All the best.

Thank you Maria, this is, weirdly, exactly what I was looking for. There aren't many answers with this strange disease so it's just reassuring to hear similar stories. Interesting about your triggers as I also have big crashes when I've been writing, using the computer, or concentrating too much. Getting lost, losing things like car keys and trouble with conversations is my biggest problem at the moment. Therefore I doubly appreciate you writing this post! I don't seem to have thyroid problems but am seeing specialists who have hinted at hormone problems, just based on symptoms (rather than blood tests). Also, similar to you, iron and vit B seems to help. (Taking folate actually made me very ill). I'm trying a nutritionist route at the moment with someone who is very familiar with CFS and mitochondrial issues - she has advised against supplements for now but we'll see what happens. Thanks again for your post.

 

[Derekthecat]

If your symptoms are more so cognitive/neurological related then it is certainly worth investigating the B12/methylation section of the forum and looking at, probably a genetic test as well. I wish I had discovered this in the initial stages of my condition, was over 10 years before looking into it.

Thanks, I have a few tests pending. My current specialist is keen to do an indepth test of my Krebs cycle so hopefully that will reveal where the deficits are. I'm a bit wary of the methylation protocol as I did a toe-test on this and my symptoms got 10 times worse but I'm definitely reading what I can about it.