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Author Topic: ME (Myalgic Encephalomyelitis)  (Read 3957 times)

Offline Ashley

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ME (Myalgic Encephalomyelitis)
« on: May 05 2014, 08:00 PM »
I hope it's ok to post this question here. In a forum this size, I'm guessing that there are a few of you who have been diagnosed with ME alongside your Meniere's. I have been dealing with chronic health problems for 16 years and after going down numerous avenues to "get well", I am slowly having to accept that I probably have ME. However, I do wonder how useful a formal diagnosis would be? Is there any benefit to pursuing this or not, given that I have essentially been doing what would be done to manage ME (e.g. graded exercise, energy management etc etc). I'd value hearing from others with ME either on or off forum, if you prefer. Is it worth getting a "proper" diagnosis?
Many thanks indeed,
Ashley

suzygirl

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Re: ME (Myalgic Encephalomyelitis)
« Reply #1 on: May 05 2014, 08:26 PM »
It is always useful to know what is wrong with you and have the correct 'label'.  It protects you at work and in education, with regards to appts and any adjustments needed.   I am not familiar with how you get a diagnosis of ME, to my knowledge it is a diagnosis of exclusion you have to rule other things out first. 

When you say you have gone down numerous avenues to get well, is that natural or nhs doctors? I have Lupus as well as a few other things so know a little about tests.  If you want to PM me, I am happy to help.

Take care

Deb

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #2 on: May 05 2014, 08:49 PM »
Thanks for your reply, Deb. I think, to be frank, I am fed up of receiving diagnoses for which there is no real cure or treatment, only management (and, often, very little understanding from other people). I won't give you a run down of my NHS trials and tribulations for the last 16 years but, suffice to say, the final avenue is ME. But, there's a part of me that just does not want that label. It feels like a hopeless diagnosis (when compared to finding a specific cause and treating it - I just want to be able to take a pill and be cured!).
Hey ho..
Thanks for listening
Ashley

suzygirl

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Re: ME (Myalgic Encephalomyelitis)
« Reply #3 on: May 06 2014, 09:35 AM »
Ashley, I think part of the learning curve of being diagnosed with a chronic illness is finding out that you can't just take a pill and be cured.  I know for myself that was a tough lesson to learn.  The thing that made the most difference was pacing myself and making lifestyle changes.  I didn't want to make those changes and resisted it for a long time, making myself very ill, however once I accepted it did improve.  I think that is why there is so much written about acceptance and the grieving process when you are diagnosed, it is more than a label it is a whole life change sometimes for the family.

WOW! I rambled, what I was trying to say is I understand.  It is an exhausting and quite an emotional process getting a diagnosis.  Sometimes you have to take a break.  Do you keep a diary of your symptoms?  Take a note of fevers?  Take pictures of any rashes, swollen joints etc?  It is useful to show at appts.

Take care

Deb

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #4 on: May 06 2014, 01:16 PM »
Deb, thank you so much. You hit the nail on the head. I was up half the night crying and again this morning and, you're right, it is grief. Intense, overwhelming grief. For so many years I have been telling myself that once x, y, or z is better/complete (iron treatment for a deficiency, physical rehab for loss of muscle/stamina, etc etc) then I'll be able to do all the things I want to. Work, social life, hobbies, travel, sport, relationships, etc etc. All of it has been in the distance, waiting for when I get better. After 16 years, it is slowly dawning on me that my life may not actually get better. I feel such a searing sense of loss (which I'm sure you and many others on this forum will be able to relate to).

Thank you for replying Deb. I know I went through a grieving process when I got the Meniere's diagnosis last year but, at that time, I was still thinking "this won't affect my progress (I had just started some voluntary work, 2hrs a week, which felt like a huge step forward). I am determined to get better". Needless to say, it has affected my progress and March and April were basically spent house bound and isolated by vertigo and utter exhaustion.

Ö.*sigh*Öone of those things, I guess. A process which has to be gone through.

Thanks for listening
Ashley

suzygirl

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Re: ME (Myalgic Encephalomyelitis)
« Reply #5 on: May 07 2014, 05:10 PM »
Do you know I am ticking things off my 'list', and it is really helping.  I had become a stay at home mom once the boys were born and we scraped by with me doing odd jobs here and there.  The intention was as I was young to go back to work and then travel with my husband as time allowed.  Then lupus hit, big time, I spent 6 months in a wheelchair and life hasn't been the same since.  I felt sorry and guilty and depressed and angry for a very long time. We were living life but I was doing it for everyone else and not for me really.  So holidays and days out etc were for the lads and Tony.   Lately we have been doing more things for me and I am enjoying it, even if it is only small things, kind of seizing the moment.  Instead of putting things off till I am better, or in case I am ill that day.  Just accepting that this is how it is and dealing with it.  We have done a few things and I have brain fog and can't remember them!  I am going for a cocktail lesson with a friend in a couple of weeks  :angel: 


Maybe it will help you?  Start small, then build up.  Maybe a coffee or afternoon tea with a friend then a night out or a weekend away?  I don't know what you enjoy, it will be different to me, I am sure.  Try it.  Let me know how you are doing.

((( hugs )))

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #6 on: May 07 2014, 07:02 PM »
Hi Deb, thank you for sharing your experience. It does help.

I wonít go into details on the www, but I became ill at the age of 23, fresh out of Uni, in a new job, in a new town. Needless to say, I never got the chance to make friends, develop romantic relationships, have the choice of having children, and so it goes on. Iím now 39.

Iíve no doubt youíve come across the Spoon Theory (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/). I read it during my most incapacitated years. It helped a lot in conceptualising what I was dealing with in terms of managing my resources. And, Iíve made the best of the last 16 years but itís always been with an eye on ďone day Iíll be betterĒ. I guess, at the moment, Iím going through a huge shift in my thinking and, at the end of the day, maybe itíll be for the best. Instead of putting huge amounts of effort into ďrecoveryĒ, with an eye on future health, I can perhaps think about how to make the best of the chronic limitations and stop kidding myself that one day Iíll be well. Disillusionment is a painful process isnít it?!

Thanks again
Ashley.

Offline Nuttyneddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #7 on: May 08 2014, 02:22 PM »
Thank you for the link, very interesting reading and a useful concept.

I think it probably would be useful to get a proper diagnosis.  I have a couple of friends with ME including one who was initially diagnosed with viral encephalitis which they later decided was ME (I was talking to her about her symptoms when I was trying to figure out what was wrong with me).  She has some drugs which help her a lot, so a correct diagnosis would give you access to those.  She is currently pregnant, and apparently a lot of people recover from ME following a pregnancy, so all is not lost regarding having children (assuming that is the choice that you would make given the option). And she's also 39 so don't give up on yourself!

The shift in thinking from "one day I'll be better" is a tough one, I'm not through that bit myself yet.  I was talking to a friend of my parents who happens to be a doctor (not a GP) and who was asking how I was feeling and even she said "maybe it's a virus and you'll get better" which just adds to the unhelpful delaying of acceptance.

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #8 on: May 08 2014, 05:31 PM »
Hi Nutty
I think I am slowly coming around to the idea of seeking a diagnosis. My resistance stems from all sorts of places including the fact that, over the years, having described my difficulties, ignorant people have said things like "Oh, you're not another one with that yuppie flu!". Given that it has limited my life drastically, those kinds of dismissive, belittling remarks felt devastating and I purposely tried to distance myself from an ME diagnosis (I had plenty of other diagnoses to throw at them, lol). However, it has also meant that I have constantly struggled to get well and put enormous pressure on myself to function at a higher level than I'm actually capable of (with the inevitable, negative consequences).

It really is encouraging to hear about your friend, who is also 39 and pregnant, with ME. Thank you. And, I can very much relate to the unhelpfulness of remarks like "perhaps it's a virus and you'll get better". As you say, it does nothing to help you to accept the chronic nature of MD nor does it leave you feeling comforted and understood! As support goes, it's worse than useless, lol.

Take care
Ashley


Offline Nuttyneddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #9 on: May 09 2014, 10:03 AM »
Glad it was a help (we need a hug smiley! Or perhaps I've just got used to writing on forums instead of expressing myself properly in words.  Either way, have a cyber-hug).

It's really great to be able to come on here and find support from others who understand, and to realise that it's not just ourselves who are struggling to accept and overcome the difficulties that MD or other chronic health problems bring.

Offline Giddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #10 on: May 10 2014, 07:36 PM »


I won't go into details on the www, but I became ill at the age of 23, fresh out of Uni, in a new job, in a new town. Needless to say, I never got the chance to make friends, develop romantic relationships, have the choice of having children, and so it goes on. Iím now 39.

I can perhaps think about how to make the best of the chronic limitations and stop kidding myself that one day Iíll be well. Disillusionment is a painful process isnít it?!

Hello Ashley

Hope that you are feeling a little better now. :)  I am the same as you - I became ill a month before my 21st Birthday and I am nearly 39. I can say that I have done "nothing" at all with my life.

I don't have any friends call or any chance of romance (who would want someone like me?) I even found out via Facebook years ago that the "so called" friends I grew up with all meet up and they don't want to know me because I haven't got any children - that really hurt. (I had to come off Facebook in the end - it got too depressing for me).

Because my balance is bad I use a 4 x wheeled Rollator to get around outside. Where we live is not adapted and also because I get very giddy I have to have my Mum take me out all the time. Mum has to help me get my Rollator though slam shuts doors and big door steps etc.... My Mum has to do quite a lot of things to help me.

I got ill in 1996 and they have only just started to really sort me out. Can you talk to your G.P at all? Do you think they could refer you to a Neurologist for a diagnosis of M.E? We had to push and push for answers. You need a diagnosis. I went through years not knowing and now I know what the problems are it is a big weight off my mind. - Mind you, everything I have got haven't got cures to them ::) - typical! But, I know what is causing me to be like it. I also have had ignorant people say nasty things to me in the past.

One of my illnesses was found on here through Deb's post (thank you so much Deb!  :)) Not many people have heard of it. Some G.P's have never seen it. (It is not M.E.) There is no support group/trust in the UK. (Other than Facebook which, I am not on). So, we don't get much support. I think I am trying to say you are not alone!
 

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #11 on: May 11 2014, 02:11 PM »
Thank you Nutty for the cyber hug (always welcome :)), and thank you Giddy for your message too, although I am very sorry that you too have lost much of your 20s and 30s to illness.

I think one of the worst things about chronic illness is the social isolation it causes. There doesn't seem to be any way around it (I have tried a number of activities (book group, craft classes, etc) where I've been able to meet people but I can't then sustain any ongoing friendship because I don't have the capacity to do things the other people do).

I will see my GP the week after next and get the ball rolling. The one thing I'm sure of is that I can't continue to live my life as if I will get better next year or the year after. The expectation and pressure is too much, especially as year after year, I don't get better. I need to accept I am "disabled" and work constructively and creatively with that, instead of trying to fight it. I think I will feel a lot better if/when my GP is on board. Fingers crossed.

Thanks for listening. It helps.
Ashley

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #12 on: May 19 2014, 05:40 PM »
After your support and kindness, I thought I'd just update you on this. I saw my GP this morning and she had no hesitation in referring me to the local CFS/ME clinic for assessment. I have to have the usual round of blood tests to rule out a deficiency but as they always come back normal, I suspect it'll just be a case of doing the referral. After that, I will have to see whether the multidisciplinary clinic team can offer any ideas/help. Finger's crossed.
Thanks
Ashley

suzygirl

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Re: ME (Myalgic Encephalomyelitis)
« Reply #13 on: May 20 2014, 09:24 AM »
Thats great Ashley, one step at a time  :)

Offline Giddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #14 on: May 20 2014, 02:39 PM »
thank you Giddy for your message too, although I am very sorry that you too have lost much of your 20s and 30s to illness.

Hello Ashley

I am very sorry too that you have also lost much of your 20's and 30's due to illness as well. It isn't much fun is it? I think that you have done very well to have got through Uni. I don't think I could have ever gone to uni - Well Done for that!  :) You also did very well trying to join some sort of classes to be able to meet people etc... I would not even think about doing that! - Too much for me!

That is excellent news that you have got somewhere with your G.P - I am pleased :) I think "in general" they would do all the blood tests just to rule anything out.

When you go to the CFS/ME clinic you have to tell them how you really do feel etc... **Keeping my finger's crossed for you.**

Offline Nuttyneddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #15 on: May 20 2014, 05:04 PM »
That's great Ashley, hopefully this is a step on the way to feeling better  :)

Offline Giddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #16 on: Nov 27 2014, 09:07 AM »
thank you Giddy for your message too, although I am very sorry that you too have lost much of your 20s and 30s to illness.

Hello Ashley

I am very sorry too that you have also lost much of your 20's and 30's due to illness as well. It isn't much fun is it? I think that you have done very well to have got through Uni. I don't think I could have ever gone to uni - Well Done for that!  :) You also did very well trying to join some sort of classes to be able to meet people etc... I would not even think about doing that! - Too much for me!

That is excellent news that you have got somewhere with your G.P - I am pleased :) I think "in general" they would do all the blood tests just to rule anything out.

When you go to the CFS/ME clinic you have to tell them how you really do feel etc... **Keeping my finger's crossed for you.**

Hi Ashley

How are you? I'm waiting for an "official" diagnosis of M.E.  :o

Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #17 on: Nov 29 2014, 08:34 PM »
Hi Giddy
I've only just seen your message, thank you. I'm still waiting for the referral to go through for the ME/CFS clinic. I can't believe it's been more than 6 months already! In the meantime, I've seen an endocrinologist who prescribed Amitriptyline for my insomnia/poor sleep (but that doesn't seem to be having any positive effect yet) and he's going with a working diagnosis of ME/CFS, until/unless another explanation can be found. The Meniere's diagnosis remains and is a separate issue. Thankfully, my symptoms have been mostly stable for the past 4 months.
The best of luck with getting some answers. It certainly takes a while, lol!
Ashley

Offline jojo

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Re: ME (Myalgic Encephalomyelitis)
« Reply #18 on: Nov 29 2014, 09:15 PM »
Hi Giddy and Ashley

It took 18 months for me to be given a diagnosis of Post Viral Fatigue Syndrome. Now known as Chronic Fatigue Syndrome or ME.

A diagnosis of ME is made by basically excluding everything else they can think of which match your symptoms etc.. When all tests etc. are done and come back negative and a full medical history has been covered it is then normally diagnosed as ME!! Basically ME is really an Umbrella term for a number of medical conditions in one go.  That is why it can take so long to end up with a diagnosis of this condition.

The best thing you can both do is seriously pace yourselves. By that I mean if you have energy one day only do so much and still do some resting. It is like having £1 to spend every day.  The idea is that you spend 80p and save the remaining 20p each day.  That way you are building up some energy reserve every day.  You will still feel tired but seriously working along those lines is the best way to deal with ME.

I was working when I had ME.  I could not work out why I was so very tired all the time.  I was not given a diagnosis for 18 months. But, being the person I am I kept fighting it and I was certainly not going to give in.  I struggled to type at work because my muscle pain was so bad so I found that typing with one hand whilst resting the other and then swapping over did help and enabled me to get some of my work done.  But, I was just carrying on regardless and exhausting myself. I took days of as holiday to rest and slept all day on these days but I could not relieve the tiredness. In the end I had to give up work I got lost driving on my way to work one morning.  I had taken the same route every day to over 5 years but I just got lost and eventually got to work at 10.30am.  It was then that my doctor signed me off.

Diagnosing ME has come along way since my diagnosis of Post viral Fatigue (ME) some years ago. But still there is no single test for this awful debilitating condition. It is still many tests of eliminating everything else and is basically a waiting game to see if anything else shows up positive on any testing that is done.

My advice if it is worth anything is to use the £1 a day recipe. I have known of others that have done this and they are now leading normal lives. Some others are still not but they are few.  I think to be honest that it is the luck of the draw, so to speak, of how ME effects anyone given an official diagnosis.

Please just pace and rest at every opportunity.  I did not do this and I became very unwell indeed!!

Take care both of you.

Jojo x




Offline Ashley

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Re: ME (Myalgic Encephalomyelitis)
« Reply #19 on: Nov 30 2014, 01:33 PM »
Thanks for your message Jojo  ;).

Offline Giddy

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Re: ME (Myalgic Encephalomyelitis)
« Reply #20 on: Dec 02 2014, 10:51 AM »
Hello Ashley and Jojo

Thank you for your help and advice. Ashley - I cannot believe you are still waiting for the referral to an ME/CFS clinic. Have you chased them up about an appointment date? I thought you would have been seen by now.

That is good news you have been seeing an Endocrinologist. How long have you been on the Amitriptyline? I used to be on that. That is good your Consultant is ME/CFS aware.

Meniere wise - it could well be your ME instead. I feel giddy all the time and they have said it is my ME. (It is official now - that I have got ME). That is good news your are stable.

The best of luck with you too with getting some answers. I agree it certainly takes a while lol...

Jojo I am glad they found your ME in 18 months. We think it has taken them 18 years finally find mine.

My diagnosis has been the same as yours Jojo. I have had all of the tests and nearly most have come back normal. I am glad they have found out what I have got but it has been very upsetting and annoying. It has not been easy.

Thank you very much for your advice about pacing. I am thinking about your £1.00 theory seriously.

I was also working when it first started and wondered what was going on. And now it has become totally un-copeable!(to the point that it is an effort to even pick up a biro). Sorry, to hear you struggled with it. It was a shame you had to use your holidays to rest/sleep. I had to give up work as I could not longer stand up all day.

I know about memory loss too  :-[ I struggle to know where we live now etc... (we moved in June). I forget the names of things, what day of the week we are in etc....

I still think GP's and Consultants need to be even more ME/CFS aware. Everytime I went to see my old GP with joint/muscle pain/not feeling well etc..... I always ended having a lot of blood tests that always came back ok. I am so glad we had to move and change GP else I would still be undiagnosed.

I did not realise you could feel so bad with this illness. It has been that bad Hospitals were testing me for MS. I also did not know you could lead a normal life with this illness either. I agree it is the luck of the draw as I have been told that I will not get any better - I would like to prove them wrong ;D I agree - without pacing yourself - you would be very unwell if you did not do it. I know that I have had to cut down a lot.

Thank you and take care all!

Marie.  :)