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????

Hmm Sharbie I haven't actually met anyone who has rececovered from it. I got it when I was 20 and 8 years later I still have it. Same with a friend of mine. I think there are very few people who fully recover. Most tend to find a good balance and have the odd relapse.

Really DP ?That's a shame, I had read before of teenagers doing well but must admit hadn't met anyone of this age with ME.
What's your opinion on the lightning Process - I can see a few comments on here.

Sorry to jump in again, but DP both my DD who is 15 and my stepbrother who is 40 have fully recovered from CFS/ME. My DD was on LP with 5 adults. 4 of them are fully recovered. By recovered I mean have none of the symptoms of CFS/ME. Yes they get illfrom time to time but only in the same way as non ME sufferers.

So have they gone back to work/school yet ?
How's that going?
How ill were they before the did LP?
Thanks.

Hi Sharbie .
Well DD started with a virus and got progressively worse - saw Esther Crawley in Bath and eventually went up to GOSH. I reckon she was mild - moderate. She was down to 2 lessons a week at school and after Lightening (it is a 3 day course) she went back to school full time the next day. 14 months on she has an 89% attendance rate(it was just on her report!!).
As far as my stepbro is concerned he has been ill since the age of 19/20. Bedridden at first but then gradually got better but lots of relapsing that led to him being self employed and moving to NZ . He did Lightening on the back of my DDs success and hasn't looked back. He is kitesurfing, windsailing, has 4 kids etc etc. Our LP trainer was in a wheelchair before she did it.
I attended LP with my DD and I think the sad thing about it is that it costs so much and also it seems shrouded in mystery. It is very very good and believe me I am a cynic!!
GOSH talk to Phil Parker and Ester Crawley is about to do an NHS trial on it. Someone said earlier about the exciting US research. Well it sounds like LP which is based on the idea that the sympathetic nervous system is working incorrectly with CFs/ME sufferers.

As you can tell I am passionate about it as it has worked so well for people I know. My only motivation in coming onto this thread is to say give it a go because I know how desperate this illness is, not as a sufferer admittedly but as a helpless mother.

I hope this helps.....x

Hi all,

Glad to see you are all exchanging info...

I went to the doctor...He as horrid. He ticked some boxes and poo pooed my upsetness!
He diecided that being tred and emotional meant tha my anti depressants were not working and has now doubled te dose. He did nt look at the list of symptoms and I had to insist on some basic blood tests. Signed off sick for two weeks. I am going to call surgery tomorrow ad go and se my old doctor.

I even had to ask him for a tissue, he didnt offer one!!

Newlease its taken ages for ds to be diagnosed

Newlease,keep at it with the Dr as nickschick has said it does take ages to be diagnosed as they have to try and rule everything else out first.

When I was first ill in '96 it was following a virus and I had been working exceptinally hard without any real break. I faced a lot of scepticism from the Drs - one quote I will never forget " Are you depressed? you don't look very happy" - absolutely classic!

When I was eventually given a diagnosis it almost meant the end of my career - I was told I could leave my job or get on with life (as I said very sceptical in those days) there was no such thing as the Lightening Process - I learnt everything at the time form a book by Dr Charles Shepherd and through trial and error. I went from not being able to get up the stairs in my own house (but still having to try and work PT) to now being classed as "highly functional". My employer (who provides my medical care) has been variably supportive depending which Dr I have seen. I have had really bad periods where I have been off work for 6 months to times when you wouldn't know I was ill to look at me. I have only really in the past 2 years "come out" with my work colleagues because of the stigma I have previously felt with this condition but the past 2 years have been really helpful with making improvements. Psychologically I am in a new place and know I can control this. I do believe you can be better but you need to be given the opportunities to do so. I don't believe this is really possible in the NHS at present. I don't know about the lightening process, those that have used it have only ever said good things but many of the ME forums I used to frequent didn't have positive things to say. I think because it is an unknown people automatically refuse to accept it may work. My only concern is it is a private treatment and it is expensive - I suspect it is little more than Cognitive Behaviour Therapy but I will happily admit if I am wrong.
I know what works for me and the important thing is to find what works for you. There is a lot of research going on some a bit freaky but everything helps! There is curently stuff being looked at that says our muscle cells don't produce energy the correct way - I think it is a case of wait and see, this illness has been round for a long time but only really recognised recently.

I hope you get a better reception with your next Dr - keep at it even when it feels as if the world/your body is against you!

Mrs S

Keep going with the doctors - it takes a long time to get taken seriously. I was one of the shorter ones I've heard about as it took me less than a year; but that was because I was sent a psych hospital for six months as they were sure it was psychosomatic Not that I'm still bitter about that or anything

You can either keep going back to the same doctor along the "Its Not Getting Better" route, or keeping seeing different ones until someone takes you seriously. Its crappy that there is still such a sceptical attitude and so a difficulty in diagnosis with this condition.

Our ds was ill for ages we were initially treated for sore throats viruses etc etc then several times we were rushed in as he was very pale and lethargic and covered in bruises so immediate blood tests had to be done.

Then I was reading in a book and i read out aloud to Dh the symptoms and he said whatever that is its ds.....it was M.E

Our Gp a lovely man simply denied that M.E existed and claimed it was psychosymatic ds struggled on with a 'diagnosis' of 'abdominal migraine'??? and we at the end of our tether withdrew him from school with the hopes of 'loving him better',3 years passed with several more blood tests and visits to the Dr....then he returned to school anxious to be in high school we let him go back to school.

He started well he was so excited to be there a lively lad -school is where hes happy - it wasnt to be .....on just over 50% attendance and sleeping sometimes 18 hours a day and being exhausted ,crying because his legs didnt 'work' his head was 'fuzzy' he couldnt remember things,several collapses at home and in the street,severe mood swings coupled with the inability to sleep bruises all over and scabs that never healed.....we went back to the GP.

After hearing dh say this couldnt continue we were sent to a different consultant who did yet more blood tests yet more 3 monthly appointments until finally we were told everything else had been ruled out and only now could it be CFS/M.E.

This was just over a year ago hes now 14 he started being 'poorly' like this shortly after his 5th birthday and tonsilitus.

The G.P??? he apologised and said he will never again rule it out if another patient suffers it - for him to see ds at his worst was enough for that disbelieving Gp to see M.E does exist.

Nickschick - I really feel for you with your son, at least as an adult when someone explans pacing you can comprehend what to do to help yourself - at 5 he would have had no concept! How is he doing now? Do you home school? I hope he starts to feel better soon.

Mrssnaplegs - you have my utmost respect and I know what you mean about the 'stigma' of ME. My only comment regarding LP and the ME forums is that they seem to be 'politically motivated' in other words they are pushing for research and answers which it is unlikely they will get. Esther Crawley believes that CFS/ME will turn out to be more than one illness and the team at GOSH (Great Ormond Street) think that searching for a gene or whatever is like looking for a needle in a haystack!
Yes, LP is expensive ,£500 ,but in the context of a holiday not a lot. The team at GOSH describe it as enhanced CBT but I don't think that's fair - it involves brain training, NLP, hypnotherapy - a toolkit of 'stuff'! It has an 85% success rate and that alone scares the wotsits off the ME charities - Why? I don't know. The reason for the success rate is that LP trainers will not let you attend unless they feel you will be open to it so you are assessed. It is not a case of taking the money and run.
My attitude is why would anyone not be in the 85%??

Mrssnaplegs - you have my utmost respect and I know what you mean about the 'stigma' of ME. My only comment regarding LP and the ME forums is that they seem to be 'politically motivated' in other words they are pushing for research and answers which it is unlikely they will get. Esther Crawley believes that CFS/ME will turn out to be more than one illness and the team at GOSH (Great Ormond Street) think that searching for a gene or whatever is like looking for a needle in a haystack!
Yes, LP is expensive ,£500 ,but in the context of a holiday not a lot. The team at GOSH describe it as enhanced CBT but I don't think that's fair - it involves brain training, NLP, hypnotherapy - a toolkit of 'stuff'! It has an 85% success rate and that alone scares the wotsits off the ME charities - Why? I don't know. The reason for the success rate is that LP trainers will not let you attend unless they feel you will be open to it so you are assessed. It is not a case of taking the money and run.
My attitude is why would anyone not be in the 85%??

Whoops! What happened there??

Thanks MrsSnaplegs....hes at school sometimes, just 'managing'

Meant to say 'Hi' to you Nickschick! Do you remember me from the 'teen' Cfs thread? So sorry your boy is still unwell.How much school is he managing? Hope things get better for you soon....x

hi opmumma,course i remember you!!! i dont come in there so much - dont like being a sympathy sucker lol .

Hes managing quite a bit more school but at huge cost to him hes knackered of a nightime guzzling coffee and energy drinks and really v moody-so hes really existing to go to school in his efforts to 'prove' us wrong,hes getting to school but having to come home or 'rest' in school.....some days he cant get out of bed so at least that means we dont disagree but for now hes got to learn it for himself .

Hope things are good at your house.

Hi OPMumma that is interesting to hear about LP, you're the first person I have come across who has really explained it and I agree that it isn't a lot finanacially if it works. I've had similr treatment through a really good occupational therapist through my employer and i would agree the NLP for me was the most useful bit from my recent treatment. I used a piece of kit called Pzzizz which gives you a piece of equipment which allows you to do structured relaxation techniques - also available on itunes supposedly but as I don't possess an ipod or iphone not much use. Nickschick - now your son is 14 it may be worth trying him with a NLP system to teach him relaxation techniques - a way to start to control his condition himself.
Anyway we've kind of got away from OP here!!
Newleaseoflife - how are you today?

LP wouldnt work for ds he refuses to even accept he is ill ,I know its had positive results for many but Im still not entirely convinced....even if I was absolutely up for it unless ds admits he has a 'problem' and stops blaming himself for something he cant control but accepts he can do things that help his condition that are within his control - even a miracle wouldnt help him .

But hes 14 and teenagers know it all .

I have doubts how LP could work - it kind of makes me think of the people who believed ME was all in the mind.hmmmmmmmm
nick try and let him deal with it the best he can - he will have to when he's older.
Its probably his way of coping with it at the moment.He won't be 14 for ever.

I will quite honestly say that I initially thought it was psychological,so much so I even 'dosed' ds up on 'tablets' tic tacs in a pill bottle,theyd worked for everyone elseand this would put a stop to it completely although you might still feel tired and achey,if you had somewhere to go like a party etc one of these pills would 'delay' the symptoms.

Ds still had to come home from birthday parties,fell ill on holiday,had to stay sat on the altar as he couldnt stand etc etc- blast those magic pills.

oh god no take it from me it is so not.
I was so ill for about 4 years I couldn't leave the house - you really feel you are going to die I had days where all I could do was breathe (lying down in bed) and that was it.
It is a horrible horrible illness which needs proper funding to find out a cause so people can be treated and get back their lives.
I was a very busy mum of two who had worked for years,never been ill with anything major before - I was the last person you would think to get ill (but this is true of some many with the illness).

In no way does LP deny that ME is a physical illness and it is not about placebo effect either.
I came on this thread just to 'put it out there' particularly for the OP to give her hope that if she does indeed have ME/CFS, there is something out there, however much ME forums deny it, that can make 85% of people who do it better...
I'm glad my DD and I did LP. It was great. It wasn't fake. She is better. Full stop.
I agree with Mrs Snaplegs that the thread needs to get back to the OP, so I will bow out gracefully now.

Op mumma I wasnt disagreeing with you in fact I was reinforcing the fact that ME isnt in the head.

please dont think I intended to upset anyone.

Before ds got ill I struggled to understand M.E in fact I like many was very ignorant....but as ive lived with this for all this time M.E is a bastard of a condition.

I just wanted to give the different side of the LP in that it didn't work for me.

I had a cousin who it worked brilliantly for, and the other people on my course were helped enormously, but for me, not a bit of difference. And I did it in just the same way as the other people on my course.

I think you have to be careful with the 85% success rate (some quote it as 97%). Yes it can be marvellous and life changing for those who it helps, I absolutely will give it that, but I don't think there is any official statistic. Another person thought it cured a third, helped a third and did nothing for a third. Until some proper, independent research is done I would say the statistics are meaningless. And I think the ME charities are sceptical because of a lack of research and because for those it doesn't help, some of the trainers can make it feel like it is your fault, and no one needs to be told that (and yes, i personally was told that which was horrible on top of the disappointment of it not working)

Anyway, to the OP, I hope you find a sympathetic gp. Tis a miserable condition. They do exist. The support groups have really helped me, so do contact them. It's just a relief more than anything knowing you aren't alone.