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M.E - Myalgic Encephalopathy. - March 11th 2010, 05:46 PM

Hi everyone.

I've suffered with M.E since December, 2008.

I'm moderately-more so severely affected.

I rarely go out, I'm now in need of a wheelchair because it's that hard to walk.

I have a bath once a month, if that, because of how it affects me.

I am in bed for most of the day, I do get up a few times a day, but for short periods, ie; to go to the toilet, to go downstairs to get food/drink, to get my medication(s), etc.

Rarely I will go downstairs for the day and lie on the sofa, but that doesn't happen at all much anymore.

I'm on narcotics for pain relief, they don't help anymore, because of tolerance, so I've been trying to come off of them and intend to discuss other pain medications for pain relief.

There is no test for it, only elimination, so I've suffered a lot of grief from doctors, family members, because there is no "proof".

The symptoms I suffer from are...

fatigue, exhaustion, joint pain, muscle pain, widespread body pains, chest pains, aches over my body, sharp pains in my body, eye pains, headaches, noise and light intolerance, food intolerance's, alcohol intolerance, sore throats, lethargy, nausea, breathing problems, heart problems, balance problems, sleeping problems, shakiness, temperature irregularities, digestive problems, memory problems, concentration problems, trouble absorbing what's being said to me, trouble with speech, confusion, mental fatigue, basically brain fog, postural hypo tension, dizziness, vertigo, feverishness,

As you can see, I suffer from quite a lot of symptoms, obviously not all in one go, but these are the ones I've suffered with since developing M, and for the majority of them, I still suffer with daily.

Right now, I'm in the process of being confirmed with having M.E, but I was diagnosed with it last year, it just needs to be confirmed so they're doing more tests (repeating tests, actually).

Hopefully when it's confirmed, I'll have a lot more support and help with this illness.

I need it confirmed to fill in my DLA forms too, as I have no income due to the fact I can't work or go to college.

Does anybody else suffer from this awful, debilitating illness?

(I also want to make it clear that this illness is NOT just about fatigue, it is much, much more than that, it affects every system in your body, and fatigue may not be the most severe symptom, I know for me that sometimes I may not get up/go out due to the pain or other symptoms, though fatigue still is a symptom.)

Thank you for reading, take care.

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Re: M.E - Myalgic Encephalopathy. - March 15th 2010, 10:08 PM

I'm sorry I know things like this are tough the biggest help is to know that you are NOT the only one.

here lies the monster 8-13-06 to 2-19-10
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Re: M.E - Myalgic Encephalopathy. - March 16th 2010, 12:07 AM

It's not really the biggest help actually, it can make you feel less alone, but it doesn't really help, not for me anyway.

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Re: M.E - Myalgic Encephalopathy. - March 16th 2010, 09:11 PM

Hey My Sister Has M.E She's Had It Since She Was 14.
So I Kind Of Get How Hard It Is.
I Know How Lonely My Sister Got Because Her Friends Didn't Get It.
I See You're In The UK Do You Know About AYME?


"Another year over, and we're still together.
It's not always easy, but McFly's here forever
I know you believe me, when you look into my eyes
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Re: M.E - Myalgic Encephalopathy. - March 16th 2010, 09:13 PM

My step-sister has M.E and i think she got it in 2008 as well...she dosen't have it as bad as you but you can tell she's very weak..her doctor tell her to go outside for at least 10 mins a day...My dad had it when he was younger and ended up just lying in bed for 2 years :S
It's best if you just try and get better? I know it's hard to do when you're that ill, but you end up going into a cycle of just getting ill and then ill again. If you put all your energy into getting better, eating healthy going outside as much as possible etc...

sorry if this isn't any help though i hope you get better!

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Re: M.E - Myalgic Encephalopathy. - March 16th 2010, 10:21 PM

i have it VERY mildly and only get really bad as in in bed /cant go out when im very stressed or something like that at first the dics misdiagnosed as glandular fever but as it returns alot they've decided it is ME and it really is horrible i feel really sorry for you as i cant imagine what its like to be that bad i wont say "i no how you feel" but maybe you should going out and building up the length of time you can spend doing something as otherwise it can ruin your life even more

i hope that one day you feel better


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If I say just leave me alone...just do it or you'll regret it
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Re: M.E - Myalgic Encephalopathy. - March 17th 2010, 03:03 AM

It's harder than that to just go out & build it up, I'm bed bound & can barely manage walking around the house.
If I could just get up & build up, I would, trust me.
But doing that could set me further back & make me more ill.
Hence why right now, I'm just walking around the house when I need to, & sitting up in bed, not lying down all the time & such.
Even sitting up can be a challenge.
So, as you can see, I'm severely affected & although I am mostly bed bound, I'm still trying to get up & walk around, but just going outside is right now a no-no, I really do hate it when people are ignorant to that, so please try to listen & understand what I am saying.

Last edited by Beautiful_Disaster; March 17th 2010 at 08:26 AM.
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encephalopathy, myalgic

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