Anyone suffer with ME?

[NewLeaseofLife]

Just had a chat with ex h who was researching into ME and he said that he thought I fitted a lot of the symptoms. I lookd it up and seem to... Am going to book to see Doctor asap but wondered if anyone could help me initially? Am I just fitting myself into the symptoms????

ME symptoms have a lot in common with several other illnesses. Therefore, the GP really is your best bet for sifting through them all, eliminating them one by one and working out the correct diagnosis.

I have had ME sometimes known as CFS for 13 years - as chilli says many other illnesses can be confused with it so best to see GP. I am classed as "highly functioning" now although haven't been in past. Happy to chat if you want.

Hi both, Thanks for getting back to me.

I think the main issue I have is simply the devastating tiredness, I wake up more tired than when I went to sleep. Despite being shattered I cant get to sleep some times. I can also sleep all weekend though... I had a weekend where my ex had DS and I slept from 9pm on the friday till 6pm on the saturday then from 10pm till 5pm on the sunday.

I have given up smoking, I am eating the best I have ever eaten, I have cut down on alcohol and I am medicated for my anxiety. I have even come off contraception to see if that would help.

I am constantly bloated, I have trouble distingushing between dreams I have had and actual events e.g. I was sure i had met my brother one day but when I mentioned it to my Mum I hadnt even left the house on that day. I lose words... Over the past couple of weeks I have been sensitive to light (although I wonder if this is jsut as its brighter) I have had a couple of really odd, nasty headaches. The latest one started on sunday, I then vomited all day and it is just going off now, Its not a migrain as I have had those before I also have cluster headaches).

I understand that the doctor is the best bet, just dread the long process or ruling everything out. It took 12 years to be diagnosed with Cluster headaches.

I am so tired right now that I can barely breath, I just want to sleep, I feel sick im so tired.

You sound like me when I was first ill and yes it took a long time to be diagnosed however it is better to get checked and make sure it isn't something else.
I will try and find you some links later and come back with some more advice if you want it but first thing is get yourself to Dr, take a list of your symptoms with you otherwise you will forget them all, take a list of questions -ditto and make notes - if you don't feel up to taking notes etc is there someone you can trust who you wouldn't mind going in with you to do that for you?
If it is ME ask to be referred to a rheumatologist or ME specialist (there are some about depending on where you live)
If it is ME most important thing is not to do too much but not to stop completely. Do a little each day but don't feel you have to do stuff. Many don't believe in graduated exercise or pacing - it worked for me but I have had reallly good medical support from my employer which has included a residential course for 3 weeks. Pacing and Grad Ex if done incorrectly will make you worse so please ask for help from the specialist.
Make sure you look after yourself, try to rest as much as possible when you can.

As i said i will try to get back later and give more info.

GET to the Drs!

Thanks so much MrsSnaplegs. Thanks for all your help. Any links you have would be great.

I have a doctors apt next Tuesday. I will sit and write out all questions etc tonight.

www.meassociation.org.uk/
www.meresearch.org.uk/index.html
www.afme.org.uk/
www.nmec.org.uk/

Ok top 3 are all support organisations with lots of varying information, bottom one is still fairly useful with some contacts on for your GP depending on where you live.

How is your list for GP going? Don't try to do it all at once otherwise you will forget - stick it to the fridge like a shopping list and write things down as you remember them.

How old is DS? Can your Ex have him a little more at the moment to help out? What about family/friends - have you got a good support network close to you?

Do you work? How is your employer being?

Hope today is a good day!

Hi,

You are great, Thank you so much. Went straight to bed once ds had settled last night so no list yet. DS with his dad this weekend so will do it then.

I have quite a good support network, My Mum is great, Ex has him set nights but has a new gf so will shortly all go tits up. I find that I sleep a lot when I dont have ds but by the end of the next working day I am back to square one again. It doesnt seem to help long term.

I am worried about my boss, he has been quite understanding...I thought it was all to do with my anti depressants but it doesnt usually affec me like this and he understands all that BUT I have another really sore throat now which I imagine will get really bad over the next day and am behind a bit on work...I hate the thought of having to tell him how crap I feel again. It seems to be one thing after another really. I work full time too. Am finding it all quite hard but cant afford to drop my hours etc.

Thanks so much

Just to balance things up a little... read this list of symptoms for iron-deficient anaemia Anaemia is incredibly common in younger women and you'd have to admit that a lot of your symptoms chime with that list. That's just one condition. There are so many more conditions besides that this is why I say you need to see your GP rather than self-diagnosing.

Hi Chil I will have a look. Thank you. I have been researching the ME thing and a lot of it mentions muscle pains... I dont really get those so doesnt really fit and am willing to consider anything I can go to my doctor with as suggestions.

I figure that they will test for everything else to rule ME out though and hope that they will be able to pick up what it is...

Yep have to say the muscle fatigue/ pain is debilitating and is fairly classic. A lot of people think it's about being tired all the time which it isn't - that's why a lot of people with ME get frustrated when talking about their condition and get the response "oh yes I'm exhausted when I do....(insert whatever activity) as well".

I agree with Chil it is better to see your Dr and get some tests done and a firm diagnosis and we can go from there.

Mrs S

NewLeaseofLife - how are you feeling? Have you managed to get any rest this weekend?

If you don't get the muscle pain I would be inclined to say it is something else. I have had M.E. for about 8 years. Had loads of tests to rule out other things. So many things with very similar symptoms.

I get the muscle pain if I over do it. Sometimes climbing too many stairs can feel like I've over done it at the gym (not that I have been to the gym for many years now).

Get checked with doc asap. Write everything down. Possibly keep a symptoms diary, times of day you feel tired and write ALL symptoms down, even if they seem irrelevant. Could include what you eat and drink too to try and give your doctor a clear picture of your lifestyle.

Hi,
I have managed to sleep quite a lot and feel half normal at the moment, I know it wont last long though but feels great to feel half normal.

I am really looking forward to going to the doctors. have put off going for ages and have high hopes....

Main isses:
Tired...So, so , so , so tired.
Bloated all the time.
Memory loss,
Confusion,
Headaches,
Dioreah (sp),
Constipation,
Anxiety - still quite bad despite medication.
Sore throat quite a lot, gets bad very quickly and sometimes gone in a couple of days other times several weeks.
Enlarged glands (could just be due to glandular fever)
Crap concentration,
Confusion,
Sleep disturbances.

Questions:
Why are these things happening to me.
What can be done?
How long is it going to take?
I would like a full check up... Everything!

Aything else I should ask?

Thanks for your support.

No point asking how long it will take. It wil take as long as it needs to. I had to see 3 different docs before they would take me seriously. Had the same set of blood tests 3 times. Had another set of more in depth tests. Had a chest x ray at the hospital. Was referred to a neurologist then a physchiatrist. My friend is going through this atm. She is waiting to see a rheumatologist. It will be a lengthy process unless the blood tests show something up.

Just tell doc your symptoms and how long you have been like it. They will do the rest. Make sure you get them to explain what they are looking for. Also you have to have the symptoms for more than 6 months before M.E. can be diagnosed.

Good luck!

ok all of those and more could be ME but also many other things so make sure your GP gives you a good going over (oooer missus!) I completely agree with Detective P - the muscle pain for me has always been the key factor to the extent I have short hair now as when it is long I can't hold my arms up long enough to dry it or put it up!

Hi Detective P (insert big smiley face and wave!) - nice to meet another ME buddie on here. May you always have good days!

Hi everyone

I have been ill for 8 years with ME and I didn't have muscle pain at first - that came later.
Just echo what the others have said OP, from your other symptoms it sounds like ME esp the glands.
There is some exciting new research inthe US that would indicate a virus may be responsible for starting this illness.We catch the virus and our bodies don't ever switch off from fighting back so that explains the general fatigue and malaise.
My GP was excellent but was very upfront and told me there was no available treatment at the moment and not to waste my cash on private treatment and alternative cures.I did try as I was so desperate to get back to work.
But trust me nothing works.Just rest as much as possible but try and do a little something each day - pace yourself.Some days will be just spent resting but in theory this will help the next day.
Good luck x

My ds has had all these symptoms and much more for over 8 years he was only diagnosed last year and hes only 14.

Hi all,
Shattered again. Just not fair

Thanks for all the replies. I never would have thought that any of those symptoms could be connected before, I thought I was just a hyperchondract (sp?).

I will have to hope the doctor is half sensible. I dont have the energy to fight a lot for this.

So how do you all cope with work? Do you work part time? When I have my cluster headaches they last for between 4 and 10 weeks and I never know when during that time I will be able to work. Its awful, I always feel like a real burden, people just dont understand that its not just a normal headaches. I suppose you get that a lot with ME? People thinking you just stay up too late etc...

Hi MrsSnaplegs (waves). I'm always glad to meet other M.E. sufferers too.

New I don't work now. I was full time when I first got ill. Went to part time, 3 full days a week for about 9 months and struggled. Then I changed to 5 half days and lastest 3 weeks. It was all too much and I got signed off sick. After 9 months sick I left as I knew I would't be going back.

After a few years I got a bit better so done a teaching assistant course which was college 1 afternoon a fortnight, 1 day a week in the school and work at home. The school gave me paid work in the breakfast and afterschool club while I was there. I got worse again quite quickly and it was apprarent that I wouldn't be returning to work. I happened to get pregnant at that time so the decision to give up was very easy for me. I haven't wroed since and now I am pregnant with DC2 I can't see me returning any time soon.

If your doctor isn't sympathetic. Just make an appointment with another one until you find one who is understanding. Thats what I had to do. In fact I had to change surgeries too. It took me a long time to go to the docs as I didn't want to go and say I wsa feeling 'tired' all the time and felt like a right fraud.

I know loads of people who have this illness and none of them are well enough to be able to work.I used to work 2 days a week but had to leave when I became ill and kept getting signed off by the doctors.Eventually I was retired due to ill health and receive a pension from my employers.This is reviewed on a regular basis.
Agree with what Detective said about shopping around for a Dr - some are not very helpful with this illness.

This is what worries me about ds .

Hi and excuse me for jumping in, but my DD (15) had CFS/ME for 2 years - not long I know compared to people on here. She did Lightning Process 14 months ago and is completely recovered. Sorry if you all know about this and have decided it's not for you but just in case there is anyone who hasn't I just thought I'd post...

Good luck with your diagnosis Mrs Snaplegs. In my opinion you have to push hard with a lot of GPs who, despite NICE guidelines still don't believe this is a genuine illness.

Nickschick - most people I know with it are in my age range (30s/40s) the chance of recovery,it has to be said, is much better for younger people and more so it seems for males than females.

Sorry - got confused - meant Good luck with diagnosis newleaseoflife

Thanks sharbie,we hope so.