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Does anyone here have M.E?

(41 Posts)
hertsnessex Sat 13-Oct-07 21:17:26

Can anyone give me any advice on this?

Thanks,

cx

Rosyspookily Sat 13-Oct-07 21:33:53

A friend of mine had it for a few years. She was a very energetic person, took a while to work out what was wrong. She had to rest loads and give up strenuous work. She has now recovered and is back to her old energetic self. I think she was ill for about five years.

hertsnessex Sat 13-Oct-07 21:35:39

thanks rosyspookily. does she know what the trigger was?

(am asking for myself)

cx

Katymac Sat 13-Oct-07 21:40:24

For me the trigger was a very high temp for 36 hrs (no specific symptoms just general feeling of yukkyness) & I never got better - I was very ill for about 3yrs then moderatly ill for about 5 yrs and now better

hertsnessex Sat 13-Oct-07 21:45:03

glad to here ppl are recovering from this. makes me feel alot better. thank you.

cx

MrsMuddle Sat 13-Oct-07 21:55:41

I have a friend who is in her 3rd year of sick leave with ME, and I want to help her so much. She seems to be being pushed from pillar to post by her GP, and has had physio and seen a psychiatrist too.

Can I ask those of you who have had ME or who have had a friend who has had ME, but have now recovered, what you felt the most useful thing was that helped you to get better?

Was it just a case of letting the illness run its course or could you recommend anything that my friend could try?

Thank you.

Katymac Sat 13-Oct-07 21:57:44

Rest, Diet & Reflexology

Rosyspookily Sat 13-Oct-07 22:00:30

My friends m.e. was triggered by glandular fever. I think it helped her greatly to be diagnosed and understand what was wrong. Then she just paced herself, ate really well etc.

SpookyDooooo Sat 13-Oct-07 22:31:23

My MIL has M.E along wiht many other things, she is terribly unwell with it & has got worse & worse over the last 6 years since i have known her, she has actually had it for 11 years now.

She struggles terribly with day to day life, she is soo tired she phoned me this week & she had only been awake for 4 hrs of the day, the day before she called.

She gets terribly down & feels her life is restricted because she has to go to bed.

FIL has just paid privatly for many tests to see what can be done, it has cost alot of money but it is something the doctors would not do.

My only advice would be to pace yourself, i think mil's problem is when she is awake she is going at 100 miles per hour & she burns out very quick, it has effected her in a bad way she can hardly walk when she is so tired, she has a wheelchair now.

They did have a top M.E doctor from wales i think she was test mil & they were told mil was the worst case she had seen in all of her time doing her job shock

I feel very sorry for anyone who has this as it must be very frustrating.

Sorry you are suffering & i hope you get over this very soon smile

SpookyDooooo Sat 13-Oct-07 22:34:59

My MIL has M.E along wiht many other things, she is terribly unwell with it & has got worse & worse over the last 6 years since i have known her, she has actually had it for 11 years now.

She struggles terribly with day to day life, she is soo tired she phoned me this week & she had only been awake for 4 hrs of the day, the day before she called.

She gets terribly down & feels her life is restricted because she has to go to bed.

FIL has just paid privatly for many tests to see what can be done, it has cost alot of money but it is something the doctors would not do.

My only advice would be to pace yourself, i think mil's problem is when she is awake she is going at 100 miles per hour & she burns out very quick, it has effected her in a bad way she can hardly walk when she is so tired, she has a wheelchair now.

They did have a top M.E doctor from wales i think she was test mil & they were told mil was the worst case she had seen in all of her time doing her job shock

I feel very sorry for anyone who has this as it must be very frustrating.

Sorry you are suffering & i hope you get over this very soon smile

hertsnessex Sun 14-Oct-07 20:16:03

After 15mths i should finally have my 'diagnosis' on monday - have looked on alot of forums etc and ME support sites and just need to know ppl to recover. i was sooooo active. up until last july (big op) and things have gone a bit downhill from then. however i am generally 'ok' with bad weeks dotted around after being busy with work.

thanks everyone.

cx

p.s. so sorry to hear about your MIL.

Katymac Mon 15-Oct-07 20:15:42

How did it go?

hertsnessex Mon 15-Oct-07 20:18:34

the dr (very reluctntly) agreed i had CFS/ME.

After 15months thats something. she said there was nothing they can do blah blah. so not helpful at all.

however i am looking around for a 'plan' -things i can do to help myself etc.

i feel better for having had it confirmed - after 15mths of blood tests, scans etc, it could be worse, so at least i can start helping myself a bit.

if you have any ideas that would be great.

thanks,

cx

Katymac Mon 15-Oct-07 20:21:36

How is your diet - I found cutting out all chemicals really helped, artificial sweetners particularly affected me

I find the more natural the better

I also find regular reflexology helps enormously

hertsnessex Mon 15-Oct-07 20:43:24

its ok, but i know it could be better, used to have sweetners - cut them out and dont have suger, but i often miss meals and then make up for it with bad stuff in the evening. will go back to organic veg delivery and take milt-vits.

i take kids swimming between 1-4 times a week, but i must do something more myself, i have a ski machine - will get on that twice a week. used to run 1/2 marathons but still have probs with my pelvis - so thats out really.

recommend reflexology to alot of my clients - does it help with ME aswell?

do you have good and bad weeks, last week was one fot he worst for me.

Katymac Mon 15-Oct-07 20:46:33

Yes - I have good & bad times but now I'm in remission they are normally days not weeks

I became very good at listening to my body & understanding it

Reflexology is great

I also found baking my own bread helped (plus buying better flour - without the 'improvers')

hertsnessex Mon 15-Oct-07 21:02:28

thanks katy xx

Tiggerish Mon 15-Oct-07 21:16:44

hi hertsnessex. so sad to hear you have ME. I had it fairly severely about 10 years ago - like you it took about 15 months to get a dx. I was lucky though cos my GP knew a lot about it and had a direct line to a specialist locally. This guy only dealt with ME/CFS and although very rigid in his approach cured 99% of his patients totally (and the other 1% were greatly improved.)

His theory was that it was caused by chemical problems in the brain resulting from the immune system attacking itself. The treatment was 2 pronged - a rigid activity/rest programme and intensive drug therapy (combinations of anti-depressant type drugs, but not for the ad properties iykwim)

It really worked too. I was back at work full time within a year and have had no problems at all since.

hertsnessex Mon 15-Oct-07 21:20:48

wow, how great to have some help. my dr said look it up ont he net, and bye bye. wonder if i should look into it further with another dr?

Tiggerish Mon 15-Oct-07 21:23:57

i don't know if he is still working but his name was Dr D.G. Smith and he was based in Essex. Can't remember where exactly, but it was due south of Brentwood about 20 mins. Might have a web site or something....

popsycal Mon 15-Oct-07 21:25:32

Hertnessex - I am undergoing lots of tests and will probably end up with a diagnosis of fibromyalgia (according to my gp today) which shares a lot of symptoms with CFS/ME and seems to be mentioned alogside it.

There was a MNer called PINDY who mentioned reflexology ad acupuncture to me but I need to chase her up to get some more details.

Hope that havig a diagnosis helps you in some way - even though there is no specific medical treatment.

hertsnessex Mon 15-Oct-07 21:40:33

I have found a website he set up - but it doesnt say where he is working - any ideas how i could find out?

was this a private hospital? i used to live in brentwood and may know of it.

thanks

cx

popsycal,

i just found:

http://www.me-cfs-treatment.com - and also went to his 'get well' site. sorry to hear about your situtation also.

xxxx

kittywitch Mon 15-Oct-07 21:42:26

Hi, my dp has it. He had it very badly before I knew him. We have been together about 10 years and although he functions well he still needs to have a sleep during the day.

pindy Mon 15-Oct-07 21:43:59

Hi Pindy here - sorry not been back to you - computer threw a wobbly !

Just completed a set of treatments on a client with ME - she is a different person - the results in 6 weeks have been really good. Today she actually said that she feels that she no longer has ME and feels better than she has done for YEARS!

So........... what would you like to know?

Tiggerish Mon 15-Oct-07 21:50:51

hertnessex - the fab bit was that he only worked for the NHS. he worked from home though - not from a hospital. It was a little village - i'll see if i can find it on multimap

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