Does this below sound like I could have Chiari Malformation?

I am a 49 year old male.

LONG TERM SYMPTOMS

For 5 years I've been suffering from hoarseness especially if I talk much.

Also for 15 or more years I have had on/off discomfort in my fingers a bit like the feeling of having dough stuck under your fingernails but in the joints, a umb stiffness sort or reluctance in them.

Again for years I have had an occasional headache in the base of my skull particularly if I run, sneeze, or look down too much (when washing up I rest my forehead on the cupboard above the sink).

I was also told five years ago after an Oesophageal manometry test that my swallowing was quite weak.

RECENT SYMPTOMS

I have been suffering with fatigue since October last year. It has been getting slowly worse and seemed to be exacerbated by exercise. I became housebound in May and then bedridden for the last 9 weeks. I get up only for the bathroom really. I have weak hands arms and legs.

The other symptoms are tinnitus and hyperacusis (in my right ear) . If I listen to sound it tends to make my tinnitus worse and give me brain fog and sometimes a headache at the base of my skull. I also often get brain fog if I try thinking for too long. These can be accompanied by pressure headaches across my eyebrows and a feeling of bugs crawling under my skin. Or sometimes I get those without other symptoms. I have lots of trouble sleeping at night and often wake up. I also get body jerks when I am close to sleep, though this could be the Amitriptyline I am taking.

CONCLUSION?

So my GP has diagnosed me with probable ME/CFS, but it doesn't completely add up as I've never really had PEM, I've mostly just got worse after exercising. I've not had flu like system symptoms at all.

A few days ago I heard about Chiari Malformation and in some ways that fits.

What do you think? Would it make sense, could it lead to my symptoms and being bedridden with tired legs?

Thank you.

Hi, welcome to the NeuroTalk Support Groups.

I'm sorry I know little about Chiari.
I did wonder when the last time you had any blood tests? The hoarseness is a red flag for thyroid and parathyroid also. A regular old Chem 20 blood test would show your calcium levels and lots of other blood chemistry. Thyroid would be done separately to that. At least it's like that here. Thyroid hormones affect the way you use energy. Parathyroid too and symptoms can include tiredness,muscle weakness and bone pain amongst other things.

PEM means Post-exertional malaise.

I'm not sure what is meant about the flu symptoms. Aches and pains. Headaches.

Jerking close to sleep is quite common. Myoclonic or hypnogogic jeck occur in totally healthy people as well although some meds or health issues might make that worse.

If you don't take your medication at the same time every day it might be wearing off a bit by the time you try to sleep. If that's the only med you take and you take in the morning then maybe ask the doctor if you can take it closer to dinner time so it's peaking when you want to sleep. You could at least see if that helps. What is that prescribed for in your case exactly? Depression? Pain?

The bugs crawling under the skin feeling or parasthesias can happen for a lot of different reasons. Blood sugar levels included.

I'm sorry it's all become so bad.

I know that ME/CFS can be that bad as to be unable to get out of bed.

I think I saw that Chemar showed you where the MG forum is too. I'd certainly do some reading in there.

Please be careful with lying in bed all day and night please. When I'm really ill and in bed a lot I get such sore legs and then I worry about blood clots.

It's nearly October again, so you've been sick a long time. Maybe get another opinion from an MD or go see someone more natural who may treat people with CFS or long Covid and has experience with post viral syndromes. They might have more knowledge about your myriad of symptoms.
Wish you well,
Let us know how you're doing,
Lara