ME symptoms picture

Part of "Blogging for ME Awareness Day 2009" To view what i have written for the occasion visit ashy00.wordpress.com and to see what other people have written, visit meaware.wordpress.com

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Comments

alvason says:

yes, all that and more.

sending best wishes from the land down under ...
adam
Posted 7 months ago. ( permalink )

rrmakepeace says:

I also have ever shifting sleep cycle, sleep paralysis, transient paralysis, information/sensory stimuli overload (crash), nystagmus, lung function problem and cramps...
Just a little contribution. ;-)

You've done excellent job with these visual awareness project!
Posted 7 months ago. ( permalink )

ashy_sheela says:

thanks! oh i get cramps and sensory overload too... ahh well, i knew i would forget something!!!
Posted 7 months ago. ( permalink )

rrmakepeace says:

There are so many symptoms, and I always forget something to mention all the time...
Posted 7 months ago. ( permalink )

KittyLamour2009 says:

I was recently told I have ME. I have many of the body disfunctions you have mentioned. They are very debilatating. Especially when many of them ocur altogether. This is why other people think they understand if they've experienced one or more symptom at one time or another.

However, I'm telling myself that not EVERY uncomfortable experience my body gives me is ME and it seems to help.

TMJ for example is the Temporo Mandibular Joint right? - there is a whole section in most hospitals dedicated to this particular joint as it is so problematic for so many people. I grind my teeth as a result of stress caused by many things including worrying about how tired I feel. This results in aching in this joint. I know that TMJ problems are not ME though if you understand what I mean. It is a result of worrying.

I don't know how long you have been suffering with ME so I'm going to just ask you...

Do you think achieving a regular sleep pattern (if that's possible) coupled with CBT and relaxation classes would help you? Would they aid the other secondary symptoms that result from exhaustion?

A concerned & tired friend ; )
Posted 4 months ago. ( permalink )

ashy_sheela says:

Hi KittyLamour, i am sorry you have been diagnosed with ME. I am in my 10th year now or living with it, so an old hand...

I do have a fairly regular sleep pattern, as far as that is possible, it does involve going back to sleep late morning and that works for me. I do need a fair amount of sleep, and it is easily disturbed.

I think learning to relax more and avoid stress is very important if you want to use your energy for more useful things, as it is very draining.

Personally i do not think CBT is right for me, it is not a treatment for ME, and i have learnt to cope and manage in my own way. I have a physical illness and i am not making it worse by thinking in certain ways. I am not stuck in a rut, i am physically ill. Some may benefit from it if they have relevant mental health issues, but i am ok. I was "encouraged" to have it but only made it to two sessions as i am not even well enough to attend an hour's intense talking like that, it made me worse for up to week afterwards each time. Unfortunately many people peddle CBT as a cure for ME, but it is not going to "cure" a physcial illness.

Yes TMJ is the the jaw joint. Mine is a bit better these days, though it does flare up when i am very drained. unfortunately anything like this can be ME-related as our bodies are malfunctionning on such a grand scale any weaknesses can flare up. I think a lot of people with ME have TMJ issues, though as you say, it's not directly ME (though who knows when it is not really defined as yet?). I find my pain in that area seems to be the muscles in spasm rather than the joint itself, but i don't grind my teeth.

Good luck with finding things that help you manage and cope with your illness, and i hope you do improve from where you are now.
Posted 4 months ago. ( permalink )

KittyLamour2009 says:

Thank you for finding the time to get back to me. I really appreciate it. Recently, I heard that an exhausted adrenal gland can play a major part in ME and CFS. Someone has recommended DHEA (often used as an alternative to HRT in the States) Have you heard of this and if so what do you think?
I'm still learning how much I need to 'pace myself'. I have twin girls aged 7 and 2 year old busy little boy. Pacing is so damn hard especially in the summer holidays! I'm going to take the DHEA - I feel desparate to be my 'normal' self again.

Take care , Kitty
Posted 4 months ago. ( permalink )

KittyLamour2009 says:

I can see now that any 'aliment' can be exasperated by ME / CFS. The day after I wrote to you was a massive learning curve for me.

In the morning I was ready to 'pace' myself by going for a gentle walk to the park with the children. By 2pm I was in bed and had to stay there. I was devastated. All the CBT in the world wouldn't have made a scrap of difference to how I felt! WTF is going on with me?!!
Posted 4 months ago. ( permalink )

ashy_sheela says:

I have not tried DHEA so i don't know. there are so many things to try but so few that make a lot difference so don't get your hopes up too high or spend too much - pacing and learning to live within your limits is the most difficult thing but the most important and probably has the best chance of allowing your body to function as best it can and hopefully improve/recover - i have no idea how you will manage to pace with 3 kids in the summer hols! Just ask for as much help as you can get from any source and rest when you can... best wishes.
Posted 4 months ago. ( permalink )

Fish Photographics says:

Hi, I'm an admin for a group called Living with illness, and we'd love to have this added to the group!
Posted 2 months ago. ( permalink )

Sean-Michael 365 says:

Really well done. I don't understand why ME/CFS is seperated from FMS. Over the years I have come to think it's the same thing. I can relate to this picture.
Posted 5 weeks ago. ( permalink )

ashy_sheela says:

i have wondered if i have fibro as well as ME as i have periods where pain is a big issue, but i am unclear about whether i have the right type of pain or enough to qualify!! I do not find warm weather helps me, and i am not aware of specific joint pains (except maybe in my spine) and these are things i hear fibro folk saying... i am sure there are big connections between the two conditions too.
Posted 5 weeks ago. ( permalink )

alvason says:

Ashy, I tried DHEA for a while and it did nothing. I think fibro and CFS are just different parts of the same spectrum.
Posted 5 weeks ago. ( permalink )

rrmakepeace says:

I don't have serious pain issue, so I tend to think ME/CFS and FMS are different.

Only time I suffered from serious stubbing and shooting pain was when I was on antidepressant. Pain and some of other problems disappeared once I stop taking the medication.
Posted 4 weeks ago. ( permalink )

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ME symptoms picture

Comments

alvason says:

rrmakepeace says:

ashy_sheela says:

rrmakepeace says:

KittyLamour2009 says:

ashy_sheela says:

KittyLamour2009 says:

KittyLamour2009 says:

ashy_sheela says:

Fish Photographics says:

Sean-Michael 365 says:

ashy_sheela says:

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ashy_sheela's photostream

ME Awareness Day 2009 (Set)

CFIDS (Pool)

Detail In The Hidden World (Pool)

Myalgic Encephalomyelitis (M.E.) Showing the world it is VISIBLE (Pool)

Living with illness (Pool)

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