[infinite_edge]

For the last 4 years I've been experiencing progressively worse fatigue symptoms. Best described as follows:

Hard to speak
Hard to "ignite" movement
Extreme fatigue, but not sleepiness
Full body weakness
No will or motivation
Little to no pleasure in anything
Poor concentration, memory

I've extensively checked into the possibility of it being a sleep disorder or some kind of diabetes, but I came up negative for everything in the tests.

The only thing that can bring me out of my comatose state pretty much instantly is Ritalin (methylphenidate), even as little as 2.5mg.

So does anyone know what disorder this might be? Ritalin gives me really bad anxiety and makes focusing hard among other things, so I'd rather fix the source of the problem rather than treating it.

Thanks for any comments and suggestions

[Magirose]

hey, I understand this kind of tiredness that you are talking about and the 'locked in' sort of feeling of not being able to talk sometimes and not being able to initiate action. But I get this as part of a syndrome....I have Behcet's. Do you have other symptoms going on....or I am speculating on chronic fatigue. Have you spoken to a doctor about it?

[ginnie]

Sorry you are having trouble getting a DX. Those symptoms can be any one of a number of auto immune problems, including fibro. I am no physician, but I would be tested for lymnes disease. Have you gone to a good diagostic center? Maybe Mayo or a teaching hospital? that is where I headed to get my own DX. I sure hope you find out what is wrong, and that there is some resolution to help you. ginnie

[infinite_edge]

It's interesting that you mention Behcet's disease, since I get frequent mouth ulcers, but I really don't have any of the other symptoms on that list.

I have been checked for Lyme Disease and pretty much every major disease and vitamin deficiency you can think of. The only thing noticeable that came up was a slightly low Thyroid T3 level, but the synthetic thyroid medication they've given me isn't helping at all. Not like the Ritalin does

[Magirose]

well with Behcet's there is an international criteria for diagnosing and you must have certain key symptoms. No one usually has them all. I know of people who have Behcet's who only maybe have inflammation in the eyes (uveitis is a problem for some Behcet's patients). But the thing is, there are many immune system problems which have similar symptoms. I made progress with diagnosis when I saw an immunologist. I would advise speaking to someone in that field. I think your symptoms look auto-immune but what specifically it might be I couldn't say.

[Magirose]

infinite edge this is to you: I will check on the criteria....something I'm never sure about is whether or not you can have Behcet's without the genital ulceration. It's my understanding that you can. And symptoms can be very different for different people. It depends where the inflammation is occurring. I will look at the diagnostic criteria again. Thing is, I can't remember how to post something on here from another website. Maybe if I post without tagging it the moderator could possibly sort it for me and tell me how to do it. Apologies for not remembering how to do it but I'm not the best with technology!

Ah, I can't post from this website. This is taken from the arthritis uk research website. It says that diagnosing Behcet's isn't always possible. But you must have the following: recurrent mouth ulcers PLUS ANY TWO OF THE FOLLOWING....genital ulcers, skin problems, inflammation in your eyes, a positive pathergy test.

So that suggests not all Behcet's patients get genital ulceration. Certainly for me it's very rare. Never now since I'm on treatment. For other people I know, it's a major part of their disease and very difficult to control.

[infinite_edge]

I've been looking into it more, and I'm pretty sure I don't have Behcet's. Besides ulcers I don't have any other sort of skin, inflammation or digestion problems. The closest thing I can even think of is having blepharitis, but I haven't had that since I was a teen. Would have really been nice to have a diagnosis though :/

[Magirose]

yes I get blepharitis a lot though haven't had it for some time. I do have a lot of acquaintances with Behcet's who don't have skin problems or gi issues. Affects everyone differently.

[Magirose]

Though having said that, I'm not convinced you have Behcet's. I think you may have an auto-immune issue though. x

[Pouty]

Originally Posted by infinite_edge

For the last 4 years I've been experiencing progressively worse fatigue symptoms. Best described as follows:

Hard to speak
Hard to "ignite" movement
Extreme fatigue, but not sleepiness
Full body weakness
No will or motivation
Little to no pleasure in anything
Poor concentration, memory

I've extensively checked into the possibility of it being a sleep disorder or some kind of diabetes, but I came up negative for everything in the tests.

The only thing that can bring me out of my comatose state pretty much instantly is Ritalin (methylphenidate), even as little as 2.5mg.

So does anyone know what disorder this might be? Ritalin gives me really bad anxiety and makes focusing hard among other things, so I'd rather fix the source of the problem rather than treating it.

Thanks for any comments and suggestions

These symptoms are all very common in M.E./CFS. Doctors in Canada seem to be ill prepared. I was reading once that the lack of motivation happens in the brain chemically. Certainly there is common weakness in all limbs and muscles for many if not most sufferers.
It can be confusing, so I hope you find someone capable. I myself had to read. before Dr.s DX 'Ed me. I haven't found any help in 20 yrs.,maybe just coffee and lots of rest. Seems more dr.s in U.S. are educated in this.