tettridge

Hi

Sorry to be the bearer of bad tidings but unfortunately what you are having is normal for ME. all I can say is there are lots of us here so do write if you need any help we are only to pleased as it is something we can do

I was in hospital because of the exhaustion and temperature rises I was having after months of the doctor trying different drugs to help and I was actually diagnosed by a doctor who was visiting another patient and he looked at my notes and spoke to the staff and they then made my diagnosis. and they let me out then as they said there was nothing they could do it was ME.

Do not knock yourself, I know I could not cope with running a family as you do. when my ME was diagnose my children were in their teens so they did help where I was unable to.and eventually after a while I was able to go back to work but it never really leaves you i am afraid.

Kindest regards

Terry

Tearsofaclown

Hi,

I read your email, and was saddened to see that your own GP is so insensitive, and obviously has no real understanding of the way this condition affects people. Please try to ignore the harshness he/she uses. I have read a lot of articles on the internet and in books about this condition, mainly as it's so difficult to comprehend for myself. It appears that many doctors are unhappy about the condition, because they can't cure it, with pills or tests. I guess it would be disheartening, if each time you gave someone a set of pills, they returned a few weeks later with no improvements. I had been a right royal pain in the neck, I'm sure, when in the early stages of the condition, I was continuously calling my GP with more unusual symptoms. There is nothing usual about it! I decided to learn about it myself, so have joined this Group, and I also subscribe to the ME Association, who provide information in their newsletters. At only £2 per month, I think it a small price to pay, for the comfort it provides to me. In some respects, the condition is psychological, because when you experience symptoms that no-body else has had, and there isn't a test to prove anything significant from, you tend to stew on it and feel 'odd'. I believe it's this, that turns the condition into somethiing 'in the mind', and it isn't the reason for the condition to manifest itself. I take antidepressants, and will admit to feeling depressed, but I always add, it's because of the symptoms and lack of support out there! I have only just found this Site, and when you receive notifications of people experiencing difficulty on the same levels as yourself, it gives you inner strength to keep fighting. I cannot imagine looking after children, on top of this condition, and know that you do already have some inner strength to do that. I've been told to listen to my body, so when it says rest, then that is what I must do, and when it feels ok I can do a little of something. I have a cocktail of pills, and I would imagine that everybody with ME does, too. My GP describes my health condition as, A Multitude of Conditions, and all react upon each other and so worsen each of the other conditions. I would think yours is quite similar to that. As Terry has written above, it is really good to know that other people DO understand, and are on here for you. Take Care. Tearsofaclown.

Maggie-mae

Hi

So sorry, when there is now no excuse, some GPs are still doing harm. ME/CFS is a serious,

episodic and disabling illness and there are GP Pathways to guide them now.

Can you change your GP ? - if possible finding one sympathetic to your

illness - one who is on your side - we know there is no cure yet but

biomedical research is ongoing and last year the Medical Research Council granted real

money to fund several research projects into the causes. This is a huge step forward,

being Government funded biomedical research.

Like the answers before, I wonder how you cope with small children and you should feel

very proud of yourself. I hope you have family and friends helping to support you. Sometimes we think we should soldier on and find it difficult to accept help.

Try to let go of all the things that don't really matter - keep in contact with groups, either

national or self-help, who know ME/CFS and how it affects us - most have websites and/or

Newsletters .

Having come a cropper last year myself, from side effects of medications, has your doctor

reviewed all your medications to see if all is well (or as well as can be). One of my

medications was causing symptoms I was then prescribed another one for - it in turn

caused other more worrying symptoms. It wasn't my doctor who spotted it, it was my son !

Sometimes, someone taking a new look at your case notes can be a very good thing.

This might not be relevant to your medications, but it does show doctors can sometimes

not listen - I now go to another doctor in the same practice who is thorough.

I hope there is another doctor you can go to who will support you the way you deserve.

All the best,

Maggie-mae.

SickAndTired35

Thank you so much for the replies...I didn't really expect any so it's lovely to hear that other people are going through just the same (although I wouldn't wish it on anyodne). Re my GP, he is a lot better these days I have to say. He did eventually offer to refer me to the ME clinic in our area, but I haven't taken him up on that yet - it's 90 minutes travelling each way amd I would have to sort babysitting and cover for the school run. It seems a lot of effort when there's no cure and therefore only limited use I could get out of the experience. But he does seem to take me seriously now and doesn't question my symptoms, and thankfully he has said he doesn't think I'm suffering from any kind of stress/depression related issue. He's the senior partner at my practice so I'm fairly sure none of the others would contradict him! But he was a nightmare at first. I think he assumed that because I have 5 children I must be stressed!!! In actual fact they are what keeps me going.

Hidden

Have you looked at the EDMESH facebook group? You'll find a thriving community of people who will help you feel less isolated.

I know you don't want to ask for help from friends and family but trying to do everything ourselves is a common precursor to this condition and continuing to strive to do our best is, I'm sure, a factor in the progression. PLEASE ask for help. How old is your oldest child? Can you start to delegate jobs to your partner/children. I'm single and have no kids so I can't speak from experience on that score but I know my parents (who are retired) like to be asked to help out at bad times. Mum rarely visits without bringing a meal from her freezer for example. It took a lot to accept their help initially but it gets easier every time I ask.

SickAndTired35 in reply to Hidden

My children are 14, 7, 4 and I have twins of 3. I've been ill since they were aged 12, 5, 2 and 1. My parents are a fantastic help and my husband is brilliant, but he is working full time and since I had to leave my job he is the only breadwinner so he works a lot. I think I'm very lucky in terms of support but I do hate to admit how I feel - in fact I think my GP is the only person I ever tell the absolute truth to!! And that's only because he signs the prescriptions! I find the whole thing very difficult to accept.

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myhealthneeds

You are amazing! But the more you push yourself the worse you will become, sadly. You need rest. You need to take things slowly. Take all the help you can possibly get. You get DLA? You might be able to get more help as you have M.E. and young children.

SickAndTired35

No...I've been too intimidated by the thought of the application process. I've seen so many people with ME complaining about the assessment and how unfair it is. I've also watched the documemtary about ATOS and the assessmemts they do and followed the criticism of them on the news and it seems as though I would be very unlikely to get anything. It seems a lot to go through for a probably negative result - does anyone have a good experience of this?

tettridge

Hi

Sorry for not coming back to you before but days seem to blend sometimes and they just vanish and suddenly Christmas is here.

I truly think you are amazing as said earlier, I know how hard it is to bring up children and to manage what you are doing is just brilliant, pat yourself on the back and try to realise what an amazing job you are doing.

I really do know what you mean about the whole thing difficult to accept, I have problems now with not only the horrible feelings of exhaustion but with the feeling of not being able to pull your own weight and the lack of self worth at times. I am not having to cope with what you are on a daily basis and I really do admire you so do not beat yourself up for it but think of the positive things you have achieved and congratulate yourself.

If you can get your family involved with the household chores that will help but I really think you need to be more honest with your husband and you eldest as they will know you are not well but if they do not know the full extent of your illness and how you are feeling then there is the risk of them just getting the wrong end of the stick.

Remember you are pretty fantastic or you could not run a household with 5 children and a husband.

Not going to mention the DLA and ATOS (oops just did) as they are scaring the life out of me as well.

Kindest regards

Terry

annebrewitt

Your story is so familar to mine. Yes I had a real battle with my doctor on both occasions, firstly when my daughter went down with a virus when she was 14 and went on to get full blown ME/Chronic Fatigue and had to come out of school. The doctors kept telling me it was only a virus and that she was fine and to get her back to boxing and school. In the end I had to go above my doctor and found the phone number of the top ME/Consultant and called and left a message on his answering machine. He called me back and was great and got the ball rolling. His own daughter had the condition, so he knew first hand about it. My daugheter was diagnosed with ME/Chronic Fatigue 6 months later. I too had been having problems and it was my daughters occupational therapist who recognised the same symptoms in me. My doctor once again would not have it that I had this and kept saying I had stress and depression, which I knew I did not and to cut a long story short, I managed to see another doctor at my surgery, who instantly felt I had the condition and referred me to the ME clinic and it was not long before I too was diagnosed. Then a few years down the line, one of the doctors who said there was nothing wrong with my daughter, then became ill and has had to retire due to getting ME/Chronic Fatigue! So now they take us more seriously. But if you are not happy at any time, with the way your doctor is handling the situation, you have a right for a second opinion. Unfortunately, I have a very stubborn doctor, She also said my husband did not have lymphoma cancer when he had all the symptoms, after a second opinion, it was diagnosed and we were told he'd had it a good few years and it went undiagnosed as stress and depression. He sadly died 4 years ago this April. The worst thing is when you have ME, you feel too ill to fight, yet that is what we seem to have to do. If we broke our arms and legs and had them in plaster, no one would question us. It is very wrong and doctors need to have more compassion and stop making us iller with the stress they put on us.

Hidden

YES! other people do feel like this and are too afraid or ashamed to talk about it, lets face it most people have such busy lives they haven't time to listen or they're so selfish they don't want to know, which is forums like this are a god-send. Sadly I couldn't have children so I'm not under the kind of pressure most women are , but I was widowed early at age 40 a few years ago and lost my home and all my possessions as my late hubby was an alcoholic. I have most of the symptoms of m.e and on top of that my spine is riddled with arthritis it's beyond surgery, and I've just been told I need two new hips and soon, so I'm doped up with morphine codeine diazepam and duloxetine. It is an effort to get out of bed never mind get through the day, but what is the alternative to that? There is none, you just have to keep going, and I do by seeing every little thing I do in the day however small ie clean the bathroom or some other small task-as an achievement. Don't push yourself too far, you're already doing a fantastic job.

Find some friends or relatives that you feel you can really trust, and talk to them, you may be surprised. If that dosen't work try and get professional help, your gp is the first port of call, if you feel he or she isn't listening find another one who will, they are out there, I was lucky I found one and he's worth his weight in gold!

Lainey40

Hi everyone

Reading all your stories is like reading my own mostly too I've no family or friends close to help just my child but there's only limited in what they can do. I get so lost feeling with so much exhaustion and horrid pain and finding it so difficult to go out much but I have to force myself. I know this sound sad but I'm very lonely and my doc M.E clinic plus Astley Ainslee have all basically brushed me off now. Sometimes I just can't understand why no one wants to help especially family as I've done so much for them and told them how I feel

ALKT

my g.p had diagnosed post viral fatigue syndrome for the first 6 months and then sent me to a clinic were i was told to get more exercise and get a dog the so called professor was very dismissive of my pain and other symptoms.but a lot of your symptoms are classic m.e.unfortunately your asthma may make things worse.