Finally getting close to the answer

[casplee]

Hi all, Thanks to an old friend who pointed me towards this site of which must i say is very informative and helping me answer a few questions my story is over six years ago i fell very ill whilst visiting Austria of which to this day didnt know what it was.
Since that time i have been having problems all of which were connected with ME-CFS but the docs just fobbed me off but i stumped my new doctor who couldnt work out the main problem of my legs being very painfull tired and jumping, problems with my head etc and basically all the symptoms of ME-CFS.

He finally said it could be MS so sent me to a Neurologist on new years eve of which he said i dont have Quote "MS or Brain Damage but i do have Functional Symptoms like ME" of which now i am lost in that i have all the symptoms pain fatique etc etc and he has also said do loads of exercise and give up smoking.

Yes i do need to give up smoking but how on earth am i supposed to do loads of exercise when i have the pain/fatigue etc? I am booked in to see another doctor this afternoon to make this a little more clearer i hope that is.

Thanks
Lee

 

[alex3619]

Hi casplee, good to see you on the forums.

Misdiagnosis if common. If you don't have ME, then exercise is probably good for you and will increase energy reserves over time.

If you do have ME, exercise is the worst thing you can do. Any exercise or activity over 30s to 2m could induce prolonged symptoms, and if repeated may worsen your condition. If you keep being overactive for someone with ME, then it is likely that you will decline to the point that you can't even do half of what you can now, or worse. The idea is to pace yourself - do half of what you seem to be able to handle in a day, and do everything slowly or in small steps with lots of rest in between.

I have simplified the situation in the preceding paragraph: you could start by reading more on this in these forums which will fill out the details including the medical research that supports my views.

Bye
Alex

ps about smoking: one ME/CFS doctor found that smokers do a lot worse than non-smokers. I don't know if this is true, but giving up smoking is a good idea for lots of reasons if you have ME.

 

[casplee]

Many thanks for your reply Alex, exercise is a big problem in fact doing anything is to be honest as in i spend most of my time having to lie down after doing anything my wife used to think i was getting away from her lol. I had a scary moment when i was driving and had my foot on the rest and went to go for the clutch but my foot wouldnt work as if it wasnt there if you know what i mean of which after i felt like i was walking with deep sea diver lead boots on:O

I have really big problems with light of which makes me really ill if its been snowing and flashing of lights that people say arent flashing? Anyway hopefully all will be answered

Lee

 

[Glynis Steele]

Hi Lee,

The problem with flickering lights, especially fluorescent ones has been described on some autism support groups. Here is a link which might help, with tips on how to deal with the problem.

http://blog.donnawilliams.net/2007/02/20/heres-looking-at-you-kid/

HTH

Glynis

 

[casplee]

Thank you Glynis That certainly helps on the flashing lights so it looks like baseball cap and sunglasses ( Look a fool in winter but if it helps as i cant afford tinted lenses unfortunately ) The docs said go to the optician and the optician said go to the doctors so i gave up and suffered

 

[justy]

Hi Casplee, im glad you found this forum, there is so much good information and support here.
The neurologist you saw doesnt seem to know what M.E is.It is not a functional illness, there are plenty of biomarkers for M.E, but the NHS wont run these tests on you, nor is it a psychosomatic or stress induced illness.
The worst thing you could possibly do if you have M.E is to exercise, and exercising a lot is madness.
People who have a prompt diagnosis and rest adequately in the early stages (that means a lot! and then even more than you think) are more likely to make a good recovery.
For you right now pacing properly and resting would be the best approach while you spend some more time figuring out what is going on. Im sure there is loads of info on here about pacing if you use the search button. If you dont have the energy to trawl through lots of posts then post a question and you will usually get some good replies and help.

 

[casplee]

Many thanks for all your kind help I have been to see the doctor and she is going to keep an eye out for the report from the neurologist and as soon as she recieves it book me in to see a ME-CFS specialist?

 

[casplee]

Well finally my GP has recieved the report from the neurologist and is refering me to a me/cfs specialist

 

[justy]

Thats good news casplee, i hope you get some answers soon. xx