M.E. or chronic fatigue syndrome info plz

november

blue-kat wrote:

Hi ME2
I have frequent uncontrollable electric shock spasms/twitches, def. worse when I don't rest enough, but you know sometimes life happens ! I've been checked for epilepsy and MS ( MRI scan and a flashing light test) but the cause is unknown - 'just ME'.

I also keel over every so often, not exactly faint, just can't stand/sit any longer, and body goes on shutdown.

Wow! Thanks for that information.

As I said earlier in the thread (first page) I think I had ME but remain undiagnosed and am now recovered mostly.

I had those spasms! They were left undiagnosed by a GP who just came round and said it was a virus and she didn't know how long it would last. I also got taken into hospital by my then boyfriend calling an ambulance as I was having spasms on the floor, twitching and sounded like I was having problems breathing (I was). The hospital did a blood test and said they found nothing and sent me home again. When my boyfriend said I was a single mum and couldn't dress or walk myself they said he could borrow a wheelchair to get me to the door then put me in a taxi! The spasms lasted for a week until eventually another locum GP came out with medication as he said I had gastro entiritus (without any of the normal 'toilet' related symptoms though). He said this as the spasms were made worse by my trying to do so much as even take a sip of water. By the time he came round I was apparently dangerously dehidrated (obviously this recollection is from what I was told not what I knew - I was well out of it). Prior to this locum GP all the rest of the medical profession had just been telling me to 'calm down' and 'not get stressed' (including the ambulance men)! I actually remember feeling perfectly calm somewhere inside me while the rest of me kept twitching and trying to breath!

The 'body on shutdown' came prior to me getting the virus (about 2 months prior) and my GP diagnosed depression which I KNEW I didn't have but I did believe it could have been related to mental health (yup they had me convinced). I just got used to being able to tell when it was about to occur (it started with a strange feeling in one of my legs) and would quickly aim (well as quick as I could) for somewhere I could lay down before I embarrrased myself too much!

I say a big thanks because it sounds like instead of some bizarre mental issue followed by a virus followed by ME which is what I had diagnosed for myself (official diagnosis depression followed by virus and depression followed by depression!) it sounds like the WHOLE thing may have been ME from start to finish only the start was 2 months earlier than I thought. That sounds so much more logical now I think about it.

Incidentally 6/7 years later (now) I am left with just alchohol intolerance (I can't drink so much as a sip) and mild vertigo. Mild vertigo meaning I have never been back to the GPs about any of this since, it isn't all the time, but I do have a tendancy to fall over/get dizzy and nauseous in vertigo causing circumstances plus when tired I walk into doors etc as I misjudge where the door frame is.

Suggestions for treatment at the time - as I had none whatsoever I just tried to do exactly what my body wanted. I didn't eat anything that made me feel ill which to start off with was a very restricted diet (excluded coffee, chocolate etc which I love, and nuts strangely enough but I can't remember it all I can only remember not eating or wanting to eat things I love) and sleeping or resting when I needed to. I did do what I could when I could so to start with that was crawling then resting (I couldn't walk) then eventually walking. I can still remember the joy in my first walk to a friend's house 4 doors away, holding onto the hedge/fences all the way, going very slowly - but the sun was shining and I was outside

scrimping_steff

loopy_lass wrote:

ive cut sugar out of approx 90% of my diet, feel more shakey & unsteady now than before!... so... had a couple ... ok had 4 squares of chocolate last nite & was shaking even more.... tried some more this morning... and started shaking again.... wonder what on earth is going on....

This is exactly what happened to me. The doctors said it was a result of cutting down foods. Try and do as november says and see a dietician. Hope you get sorted soon.

scrimping_steff

I have been bothered that this thread is going against moneysaving rules, not seeming moneysaving. But you know when you look at it, the only way to get advice when you have m.e is to pay for it. How many sites are dedicated to 'cures for m.e' all for £10+. Having your fillings removed £70 a time.(some adhere to this as the cause by the way), herbal remedys a price as well. Just think how much we are saving by FREELY giving one another advice here.

loopy_lass

wont be long before a mod shuts this thread down, cos we cant ask for or give medical advice, we cant talk about anything illegal, we cant speak our minds incase it offends, we cant have bibles, we cant eat meat, sugar or discuss bottoms....

bO ll ox z

talk about big brother... its 1984 all over again

blue-kat

I do think it is necessary to watch out for 'snake oil' merchants targetting people with ME, and other ailments/illnesses/disabilities.
-

loopy_lass

sorry to bring this back to life foilks.... my diabetes tests came back ok, so did thyroid etc etc etc... Dr says, i just need motivation!!! My ME seems to be quite bad at the moment, went to drs for said BT and said i felt awful as it had been the second time that day id been doing something, and she said i looked terrible & made me lie down, blah blah blah... all i wanted to do was sleep! so even she noticed it & said oooo theres something wrong here!! Ta daaaaaaaaa

been in touch with ME association thanks to these threads, and got some great advice, printed out "checklist" and can tick all of them... So ive made another app. with dr tomorrow, am going to suggest they refer me to consultant & if she refuses i shall enquire as to how i do this privately....

will keep you all informed,

loops x

Ted_Hutchinson

Green tea extract and catechin ameliorate chronic fatigue-induced oxidative stress in mice. (click on Green to make link work)
The way to obtain a high level of green tea extract (GTE) and catechin is to use LEAF tea brewed in a pot. A heaped teaspoon of Green Tea LEAF in a pre-warmed 500ml teapot then filled with boiling water and left for 15-20 minutes to cool down, will have a much higher level of GTE and catechins than dunking a bag of low grade green tea dust into a mug of hot water for a couple of minutes see The Truth In Tea for more details of the health benefits of green tea. Tesco's do Clipper Green Leaf tea fairly reasonably priced.
There's other research showing that more GTE and catechins are absorbed on an empty stomach after overnight fasting, so if you make this your morning cuppa you will get a quicker effect. Remember the Japanese who have done most of the research on Green Tea drink at least 6 cups every day 1200-1500ml daily so don't expect one morning cuppa to suddenly make a dramatic change in your activity levels.

Turning_into_scrooge

loopy_lass wrote:

sleep... mmm well, that fluctuates phonix... sometimes i can be dead to the world nigh on 23hrs per day, other times i can be up and about at 5am, get everything done, then run out of steam and have to go back to bed.

generally i go to bed around 10pm, sleep until 8am, once i get me legs working im up and doing a bit of this and that, then i run out of energy about 1pm and sleep till 2.30 - 3pm....

thats about it...

loops

Just a thought but have you been tested for FIBROMYALGIA SYNDROME ? CFS is a part of it but so is the fluctuatins on the sleep pattern. I have fibro and cfs, i really do sympathise

EDIT: thyroid is also a sympton of fibro but very often the tests come back negative

loopy_lass

:beer: Well i never, printed some info off from various websites suggested here... took it along to dr and said im suspicious it may be this.... she umed and ard a bit and then asked ME what i wanted to do about it...

So i said refer me to a specialist then we will all know whats going on..... so she agreed... offered her my print outs and she said it was ok she had access to such herself.

not sure what a specialist will do.... any suggestions? what do they ask? what do i need to do? should i start & keep a diary?

thanks loops

Turning_into_scrooge

Hi Loops

I saw a Rheumatologist, who was useless i have to say , but anyway they usually rule out other things though blood test, take a history a full list of symptoms. The chances are they will re do any blood tests your GP has already done :rolleyes: . You will more than likely have to have an examination with a nurse present. Its basic ellimination whatever the diagnosis but the diagnosis cannot be formed untill all others have been ruled out. I have a relative with ME who has vetigo with it, also the excessive tiredness but also blurred vision occasionally and muscle pain and weakness, lack of concentration and confusion which are also all the symptoms i have with fibromyalgia :rolleyes: . The only difference is that fibro has a series of trigger points on the body that hurt like hell when touched. the points are not there with ME :eek: . It is far better to get the diagnosis as you may be entitled to claim disabilliry living allownce if you need help when you are really bad with general things such as getting dressed in the morning etc. Good luck, i hope what ever your outcome it is satisfactory for you

EDIT: a diary would be a good idea, also a food diary just in case you are showing any allergies which are just apearing, you may also have up to 16 weeks to wait for your appointment :eek: