ME (Chronic Fatigue Syndrome)

[aimeesmummy]

Hi,

Can anyone help please, does anyone have any knowledge of this condition?

I'm a single Mum and I've recently started seeing this chap who told me (in an early phone call before we actually met) that he has ME. We've only been seeing each other a couple of months and I don't know how to handle his illness. I can't get out much as my daughter lives with me (plus he has his toddler son a lot), so we've only been out a few times and have done a lot of staying in; dinner, talking etc, oh and "staying in" (which is nice!).

To cut a long story short, my daughter is with her Dad this week (Easter Holidays) and when I have child-free time, I unsuprisingly like to get out of the house bearing in mind I spend most nights on the sofa in front of the telly. Last night, this chap came over and he wasn't feeling great so we just stayed in. He has permanent headaches anyway and has had stomach pains for a few days. He turned up at about 8, he fell asleep cuddling me on the sofa watching tv, he went to bed about 10 and I went up about an hour later - a little bit frustrated I have to admit.

Now I know he has this condition, I know he says he's always tired and always has headaches and I know he goes to bed far earlier than I do (and gets up way earlier). My mind is jumbling over how on earth do I deal with this? I do like him (and am having some of the best nookie I've had in years ) but I know I have a lot of energy and like going out and doing things and I spend far too much time obn the sofa on my own.

Sorry of this is a bit jumbled but anyone elses experience of ME, either "suffering" from it or dealing with a partner with it, would be very much appreciated.

Yes, me! I am an ME sufferer who is currently in good health but has had it in various stages for just over 10 years! I just have to pop into a quick meeting (I am at work) but when I am back I will write you a long post. Should be 10-20 mins.

my ds2 has this type of condition he has phases of good health but can have some quite debilitating times ,i believe that as he gets older he will be able to recognise his symptoms and 'manage' it for himself - rest is a big part especially when hes at a low time.........does that help? my ds is only 12 and continually fights his symptoms until it gets too bad and then he ends up in bed poorly,ds2 lso get frequent hedaches at low times

Well I was only 5 mins in the end!

I will post in several large chunks!

First things first I think its important for you to realise ME is much more than tiredness, it effects different people in different ways with varying degrees of severity.

There are some good websites out there which I suggest you have a look at, to begin to understand the condition a bit more, for example www.meassociation.org.uk/ and www.afme.org.uk/.

The basic symptoms (although not everyone experiences all of them) are:

Overwhelming and persistent fatigue or tiredness, especially after doing things that didn?t used to make you feel exhausted. You may notice the fatigue straight away or it may take a day or two to kick in and is not relieved by rest. This delayed reaction is a distinctive feature of M.E. which can help doctors to make a diagnosis.

Feeling generally unwell or malaise which is similar to feeling like you have the flu. A sore throat with or without swollen glands.

Pain is common and can be felt as aching in the muscles and joints, pins and needles, muscle twitching and headaches or migraine.

Sleep difficulties such as needing to sleep excessively or not being able to sleep, unrefreshing sleep, waking in the early hours, light, dreamy, restless sleep and sleep reversal (for example, sleeping from 4am till midday).

Problems with thinking such as concentration difficulties, memory problems, difficulty finding the right words and problems organising thoughts.

Problems with the digestive system such as nausea and loss of appetite, indigestion, excessive wind, bloating, stomach cramps and alternating diarrhoea and constipation.

Problems with the nervous system including poor temperature control, sweating, dizziness and difficulties with balance and vertigo.

Increased sensitivity; to alcohol, medication, some foods, bright lights, noise and odours.

Now people rarely have every sympton and some people have a lot more than others. Also severity can vary hugely. Some people manage to hold down full tiem jobs as long as they look after themselves (this is where my health currently is), others can only work part time, some can't work at all. Some people have been bed-ridden for 10 years, others in wheelchairs or using sticks, whilst some can walk a few miles as long as its a "good day". Some people "get" ME, are ill for a year or so but fully recover and are never ill again, whilst others (like me) will relapse (sometimes severely) during times of stress/work pressure/general ill health.

You also get "good" days and "bad" days, on a good day you feel so much better that if you are not careful you end up doing too much and as you often get delayed reaction to overexhersion you wont feel it to 1 or 2 days time when you will have a really really bad day! This is the trap many fall into, the trick is striking a balance between doing enough to aid recovery but not doing too much as this will put recovery back.

I am no expert on ME but thought maybe I would share my personal story as well.

I first got ill when I was 15. Had a virus that never really went away and was left with post viral fatigue (another term for ME). I had the entire year out of school. However, my health was very well managed, I got support from health professional (my parents had private health care) and an incredibly supportive family. In ME terms I made an incredibly quick "recovery", it only took about a year.

I went on to do my A levels pretty much recovered. I would have lots of bugs and would get a bit run down at times but managed pretty well. By the time I went to uni I thought I was completely over my ME. The doctors told me I was and I was completely unaware it could come back. Of course it did. Uni is not an ME friendly place. Once I started my second year and the work started to get serious, the partying continued and I ignored my health, it started to fail. This time of course I knew what it was, I knew the symptoms and what was going to happen and I "refused" to let it "beat me". Such a silly ignorant attitude, I fought and fought it for months till I could no longer walk. I ended up using a wheelchair for the next 2 years and it took me another year to begin to be able to work part time. I am now 26 (next month) and am in 90% health. I work full time ( have for about 2 years now) but do get the sypmtons if I am run down so have to be careful. I now know it will never go away but as long as I manage it well I never need to be as ill as I was before. Keeping well is my biggest priority and I work hard at it!

Through most of this I had my lovely lovely DH. He was my rock and my support. How he coped with it I will never know, but he did and I am eternally grateful. He met me at college when I was 16 and has never left my side, even with all my health problems. He has pushed my in a wheelchair and understood when I have not been well enough to physically show him the affection he deserved. Now he says the best bit about me being well is being able to walk along the street with me and hold hands, he missed that when he had to push me in a wheelchair!

Now, how you deal with a partner with ME is difficult. Firstly that will really depend how bad it is and secondly on whether you are prepared to accomodate that.

I can't begin to answer either, there were times when I had no idea why my DH stayed with me. I am so glad he did and I have recovered to a level where we can lead a normal life. I still cant do as much as most people my age, there's no way I could play sport or do a job that was physical or involved a lot of standing. None of that bothers me (or DH) we both feel truly blessed to have each other and that more than makes up for the things we can't do together and we are now planning to start a family later on in the year. Through it all it has made us stronger, if we can deal with that we can deal with anything! Whether the sacrifices are worth it for you though I could not say, that is a decision only you can make.

Really sorry to hijack, but can I just ask playingthewaitinggame, how ME is diagnosed ?

Having had ME also in my twenties, and having met my DH during that time - I can't say why he stuck it out with me.. must have been the nookie

I really don't know how to advise you, but if you like doing active things and he can't, then you may resign yourself to the fact that he may be unable to join you - and may be unwell enough to join you for many years to come. my Dh used to still go on his walks and hikes with other friends, and I loved the fact the he could (without guilt) enjoy himself doing something he loved doing - even if it was without me.

I couldn't walk for a whole year- and after that had a very debilitating time for 7 years. My Dh stood by me and helped me tremendously during this time.

I don't know if you are willing to be with someone who is so ill, having only met him recently. you may be taking a lot on, especially with your own child to look after.
But that decision is up to you.

I'd contact the ME association and make sure your partner is getting all the medical help he can.
ME donsn't have to last forever, nor does it have to be severe.
Careful attention to not exceeding physical limits and diet 9avoiding foods allergic to for eg) can make a big difference in quality of life of sufferers and those around them.

Good luck!!

Cracker, thats a difficult one TBH. When I was a child (15) I was refered to a peditirician who diagnosed. When I got ill again I went to my GP who agreed it had come back but was competely useless no help at all. After nearly a year of nagging he refered me to some kid of general specialist who thought I might have MS. So I got referd to a nerologist who did MRI scans which was clear but he wasn't convinced. So I was referred to St George's hospital where I spent a week in their neurology wing under assesment. They eventually concluded it wasn't MS it was ME but offered no practicle help with it at all. Second time round the medical profession where completely useless, thank goodness for the internet!

crackerofnuts- our ds2 has dignosis of 'm.e character illness' its very hard thing to diagnose in younger children /adults ds2 is now 12 he has had 'symptoms for 4 years involving withdrawal from primary school at its worst,3 years on hes in secondary school doing well but is still limited by his health
hes very sporty sociable child and when he has what we term an episode' it generally follows a upset (the loss of a pet) stress(tests or tough work) and even happy times such as xmas and birthdys can all bring one on hes been sent home from parties ill,trips out to the fair or park can also be affected.
generally he becomes v tired and cross,he can have severe headaches and aching limbs so much so the weight of a duvet makes him cry with pain or he will actully vomit and collapse(this has happened in the street and in the bath) he will then sleep for 15-18 hours wake up feeling weak be out of sorts
for 2-3 days sometimes a week or more and then hes o in between he will become v pale with dark rings and red ness around the eyes.
He was tested for various things leukmia included and this was the only dignosis we could get - eventully we hope he will manage his condition at the moment he fights it he hates being ill he sees himself as weak and i see the stress he feels.

I was very much like others a non believer how could you be so well one day then ill the next? its down to laziness wouldnt we all like to lie in bed if we felt like it???

Within weeks i saw this condition for the devastating condition it really can be and believe me its not an 'easy opt out' because it cant be cured with pills and people dont share the same symptoms its vv difficult to dignose.

I would give anything (as would any mum) for my son to enjoy good health.

I have this. I get mood swings, fatigue, joint pain and memory problems. I often do daft thing but sometimes it's nice to forget them though . I've been like this for 16months. I contracted Glandular Fever. I often wake up and find it really hard to function, it's almost as if I've had all my energy sucked out of me. I also get dodgy tummys and headaches. I've been told that chocolate and exercise helps.

aveanap my ds we think got his virus when he had suspected appendicitis - i think hed like the chocolate remedy
seriously do you get any medical help with yours cos we get none ,just iron when hes v rundown

cracker and waiting, I was diagnosed after a severe episode of glandular fever - after which I was just getting worse and worse even though my bloods were 'normal'.

Most of the GPs I went to just thought I was malingering and needed a vitamin B6 injection to perk me up.... eventually I did some research and I found a wonderful GP and holistic therapist who specialised in CFS chronic fatigue syndrome and ME to diagnose me (which he did straight away based on my questionnaire and examination).

Tests showed I also had a huge candida 'invasion' and had to go on anti fungal meds and a very very strict absolutely no sugar or refined food or dairy (allergy) diet for two years.

So many people thought I was just depressed or malingering as I didn't obviously look ill (apart from the dark circles) the ignorance was horrific. I made some very good friends during that time - the rest of my friends who didn't understand, or were judgmental, I let go!

ME wasn't the worst thing in the world for me - I learned a lot about what type of person I am and how I need to behave in certain situations which used to stress me out.

I read an amazing book ME and You and it helped me a lot as I could just get people who didn't understand to read it. There were lots of strategies explained in the book also as to manage and overcome the condition.

Contact the ME soc and get a recommendation for a friendly GP.

Good luck to all.

I get no medical help at all. Had the candida aswell, raw garlic clears this up. It's just the head fog that I can't manage very well. I write assignments for Uni and I've no idea what I've written. Then I re read them and think 'did I really write that?' I've done it on here more than once. It's so . I was training as a paeds nurse when I became ill. I've left now because I felt unsafe around the sick children.

I don't have ME, but have Fibromyalgia. The symptoms are very similar to ME - chronic fatigue (which in my case comes and goes), pain in the muscles, headaches, and memory problems.
I get frustrated when I can't do the things I want, and I know DH gets frustrated when I'm fast alseep at 8pm - or the opposite and wide awake(but feeling awful) at 2am
The ME association website should be able to help you out. have you tried talking to your DP - asking what if anything you can do to help?

Thanks for the replies.

I asked as I have been feeling generally unwell for months now, with weakness in my limbs, nausea, stomach problems, feeling tired etc etc, the list is endless.
This all started after I had the flu and then a stomach bug at xmas.

I am off to my docs on friday for the results of a blood test, but I suspect it may come back as normal and i'm trying to decide wrther to push for further tests of some kind.

Thanks for telling me about it, and sorry again for the hijack aimeesmummy.

I've cut out lots of artificials in my diet & I am much better than I was

I also found making my own bread with 'proper' old fashioned flour really helps

It is frustrating - I slept for 12.5 hrs last night but that was the first bad night in months - I have been in remission for nearly 7 yrs now

Cracker, bloods tests will be normal to rule out anything else. Often the only real way to diagnose ME is to rule out everything else it can be! Some docs can be great others are completely ignorant. Second time I was really ill it was almost as if my gp felt "ok, you know your ill what are you bothering me for, just get on with it!". I changed gps 3 times till I got one that would listen to me and refer me on.

Avenanap - i agree its the head fog that I found the hardest. I can cope with pain, tiredness, pins and needles, headahces, etc but loosing memory and concetration is very frustrating!! I would "get lost" in conversations.

As debilating as ME has been for me and as much as I have lost to it (friends, degree, proper career, years off sick etc) I actually think it has been a positive experience in my life. It has made me who I am. I appreciate things that I didn't even value before. I am convinced the reason I got married young, want to start a family before any of my friends etc is because I place a much higher value on friendship and family than I used to. I am genuinely so thankful that my health is good enough to leave a relatively normal life, its feels like each day is a blessing. And I still get enough bad days, paticularly when I am busy at work (I'm actually having a bad week) to remind me what it used to me like. So at the moment when I am sitting at my desk at work, typing with my swollen hands, trying to ignore my head ache and tiredness and the pins and needles in my feet I remember what life used to be like for me, it gives me a little taste, and makes me even more grateful that I don't get many days like this anymore. I genuinely get excited about being able to do the little things now and I don't mind the bad days as I work hard to keep them as few and far between as possible and they always remind me of how good life is on a good day!

My goodness me! I've not logged in since I posted my first message - thank you all for sharing your stories. I will have a proper read through. I don't know where the relationships going, it's very early days, but him having ME doesn't stop me liking him.

Another one with Fibromylgia, I have had a bad time since Christmas, sleeping very little, maybe 3/4 hours a night, then falling asleep on the sofa during the evening, and weekends.

I have chronic headaches as well, much of my non sleeping, is to do with the headaches, thy wake me up, once awake, I then cant get back to sleep.

But it does come and go, this has been a long flare up, usually it lasts about 6/8 weeks then, the sleep gets better, and the headaches get better.