How did you get a diagnosis?

Brain and nerves
1

Hi

I am  30 yr old female and I have been having the symptoms of CFS since I was 15. I have been on and off antidepressants, had tests for underactive thyroid and anaemia etc and get pain relief dished out when i have muscle pain. No one is listening to me. My partner says i am lazy as i can literally on bad days spend all day in bed and then get up for an hour and go back to bed and solidly sleep yet constantly feel too exhausted to do anything. I struggle with concentration and memory on a daily basis and back and joint pain. I feel like i a constantly moaning about something. I am putting on weight and my children are not getting the time with me they deserve. any help would be greatly recieved.

2

It took me a few years to get a diagnosis. I was fobbed off by doctors trying to give me antidepressants, saying I was just tired and sleeping so much because I was depressed.

I kept saying 'but I'm not depressed!, my life is great apart from how fatigued and ill I feel!'

I didn't accept the antidepressants and kept changing doctors and surgeries, until finally when I kept saying 'I think I might have ME' one send me to a consultant. I wore him down.

Don't take no for an answer, demand that you see a consultant! It's your right, and best wishes with it. 

More is known about it now; I went through this some years ago so have hope.

3

l agree its a battle of will,s with some gps, if you dont fit obvious symptom conditions and your common tests come back clear, its easy for them to fall back onto phycalogical, sometimes it is, sometimes not, but they often stop testing for unusual or rare conditions, took me years to get intersticial cystitus diagnosis treatment, didnt take specialist long, just getting to right one, treatment helped 90percent symptoms, years ago, But now l also struggle with finding energy to do most basic jobs, no stamina at all, worst time in morning, motivated by pet care, then after an hour can lay on sofa an sleep for 1-2hrs, aches and pains with it, little concentration, memory, leaves you with an existance, and yes l often think they dont listen, easier for text book response, pycalogical.. But someone on a thread yesterday mentioned magnesium deficiency, looked it up, and fitted me also, as with other deficiency,s, problem is most gps only test for most obvious, iron aneamia, thyroid, All the while its going on its putting strain on your partnership and kids, which makes you feel worse, vicious circle, Georgia is right, some gps will keep fobbing you off and months years can go by, not right, also at a time when you feel least like battling over it, helps if you can take partner, parent, to support and back you up, but good luck with it.

 

4

And Lynne's right about taking someone with you if you can, because it's hard to hold your own against a doctor when you're just a patient with barely any energy and you only have 5 minutes to state your case.

Some support will give you more strength to demand to see an ME consultant.

And if your doctor still says no demand to see the practice manager! 

5

If you're not getting the help and assistance that you need from your doctor,  you need to change doctors and then get a referal to a ME/CFS clinic where you can get the help and support you need to give you the best quality of life you can.

It's tough trying to explain it to family and to get them to understand but again, if you are under the care of a consultant, that may make them sit up and take notice.

I'm sure that many of us have suffered what you are going through and would say that it's important to get people close to you to understand how ill you are and that starts with receiving the correct medical help.

 

6

Yes Mike so true! My family and friends didn't take it very seriously until I got a diagnosis and even then it's taken them years to slowly come to a realisation, and they still don't understand the severity of it.

So the earlier you can get a diagnosis the better, and although the medical professionals have not yet found a cure scientists are researching it, things are being found out about it and there are herbs, supplements, complimentary medicines that can help.

I'm saying there's hope, some people get better but first step, diagnosis! 

7

Hiya, I had a violent reaction to a stomach bug in 2010 and was rusehd to hospital with suspected heart attack.  I lost my (unpaid) work scheme job and went downhill from there.  I was eventually diagnosed with M.E/CFS in JUne 2011.  I had to leave another unpaid, voluntary job as I gradually became too ill to do anything.  It has been an immense uphill struggle trying to get those nearest to me - friends and family to 'be on my side' and be there for me.  Most people keep saying, "Yes I feel tired all the time", or "We just have to get on with it don't we" - these are from everyone.  People are SO ignorant about M.E.

I used to go to the M.E. clinic and be crying my eyes out because no-one I loved believed me, or was there for me - I think that hurts the most.  I would say to anyone like yourself who has had this dreadful illness for years, to change your GP, until you get one who helps you.  I moved home in 2013 and had to find a new GP.  The first one was dreadful, and the one I have now is not much better - BUT I am lucky in that my previous GP believed me and listened, and put me forward for the M.E/CFS Help Group therapy.  So my 'new' GP HAS to follow on from that diagnosis.  I dread going to see him because he is pretty useless.  I passed out last year at a friend's house.  She had given us sandwiches and salad then cake.  About 2 hours later, I felt very sickly (as I often do anyway)and got up to go to the loo.  Then I passed out!!  I saw my new GP later in the week, and he said that it's not unusual to pass out after a meal!!!  I told him it was only a light salad, and I feel nausious all the time, but he insisted it was nothing unusual!!  I've never heard anything so ridiculous in my life.  After seeing the male nurse on the news, who forged his medical certificates, I do wonder how many doctors etc forge their papers?  My doctor is Indian.  How do I know his certificates are real???  Due to his lack of patients (when I go for an appointment, there's never any other patients waiting to be seen by him), I do wonder.

I am waiting for a new surgery to open across the road from where I live, and will sign on there eventually.  The reception won't let me see another GP in my present surgery!!!  I don't think they can do that, but no-one will back me.

I am fighting at present to get changed from the work-related ESA benefit group, to the Support Group as I truly can't work.

Persevere, get as much help as you can, and don't EVER give up.  Things are gradually starting to change re M.E. thank god.  Change GPs until you get one who cares about you.  Get leaflets on M.E. and pamphlets from your GP surgery or hospital, and give them to your partner.  Try all that you can to get ina M.E/CFS Support Therapy Group near you - write to your hospital and ask them, and they truly do help you with many issues.

Best of luck, I am on your side.  take care, love Val x

8

Hi Kirkby

I thought my diagnosis was pretty quick!  I had upper respitory track infections, sore throats, bronchitis, severe ear infections etc etc for 7 months.  However before that I kept going to the doctors saying how totally wiped out and exhausted I was for about 2 years.  On hindsight I was not depressed, or lazy (misconception of this disease), but found out I had ME/CFS in January this year when I became bed ridden for 2 months.  There is light at the end of the tunnel for me as I am feeling much better after just starting to return to work, starting at home with just a few hours in the office, but not full time.  

However like you i struggled getting my partner, family and friends to really believe me.  They eventually came around after reading some ME/CFS materials from NICE - I gave them the employers version which spelt out symptoms and how it is a recognised disability.  I also showed them a few youtube clips.

I am araid you need to be totally selfish here.  If your partner does not understand, dont bother explaining - that uses up too much energy.  Instead take that precious time to rest away from conflict.  As for the weight, I fully understand this too.  Initally when diagnosed I lost a lot of weight due to nausea.  However they prescribed Amitriptyline, which after a while has made me get my appetite back - which is a catch 22 situation as the weight has also started to come back on when I need it most.  Now I am feeling a bit better I think I may start cutting back.  I am also taking so many tablets, such as vitamin B12, Magnesium, N-Acetyyl-Cysteine amongst many others.  Over a 4 week period I have noticed energy coming back.  I hope this is good news - and not just a placebo affect.  

If you need to rant, rave or cry, this is the forum to do this in.  We are or have been in the same boat!  If you need to stay in bed somedays to recover for a little bout of energy the next - then so be it.  Listen to your body, let it heal, it simply takes time which can not be measured as each person will be different.

You take care Kirby 15708 and rest easy.  I wish you all the best

9

I have to say on things people say to us! People from my family and friends, who know I've suffered from ME for 10 years still complain to me that they're tired or have a headache! And I murmour the appropriate soothing words.  What else can I do. Give them ME!!!! 

10

You told your GP you'd eaten salad but did you tell him/her that you'd eaten sugar?

Sugar, either too much or too little can make people pass out so perhaps you need to be checked for diabetes? Just a suggestion. I have it so it rang alarm bells.

I have the hypoglycemic type, as in my sugars are too low and I'm too thin but it's just as devastating and serious as the overweight, high sugar diabetes as in can lead to a coma either way, high sugar or low.

I'm just saying I know a bit about it.

11

Hi

Thank you all for your messages. I never realised my eating habits could impact and be also a part of me. I have always been told I have ibs even though I've never had any tests to prove it. For the first time I actually feel like other people understand me and how I am feeling. It's so hard to explain to people how exhausted I am. Thank you

12

You don't need to explain how exhausted you are, or how lost and frightened because we're going through the same things. 

Keep coming back because there's a lot of support here and we feel for you because we know what it's like. 

13

Hi GeorgiaS, yes I have been checked for diabetes and have been told I'm on the cusp.  At the time of that picnic, I was with 2 pals who have diabetes, but they were fine.  I keep having dizzy spells, but am constantly told it's M.E.  I am 5ft 11" and weigh 15 stone - throughout my life I've been really slim and around 8 and a half to 11 stone - I am 55, and my weight has fluctuated since i was about 48.  I put on 4 stone in the last 2 years, due to M.E and having to stay in or go back to bed so often.  I used to walk for miles, and cycle everywhere and had a '6 pack'!!!  I have to see a physiotherapist this Thursday, and am going to ask them to give me the right exercises for an M.E sufferer, with possible under-active thryroid and definitely a Hiatus Hernia.  This is all down to M.E since 2010.  My GP told me to lose weight - he is a fat man, and won't even get up from his chair to give me a blood pressure check.  I have to have B12 jabs for the rest of my life, and the nurse referred me to a health trainer at the surgery.  The health trainer has gone off sick, but her stand-in is pretty good.  He is going to devise something for me, after the physio tells me what I can and can't do.  He said that he wished everyone would eat as healthily as me - I've eaten healthy food all my life.  I suffer with insomnia, which can trigger diabetes, I think that's the only way that I may eventually have diabetes, as it's nothing to do with my diet.  I have so many things connected to M.E. and have just had blood tests for my brain as I have awful short-term memeory loss.  My gran had dementia, but she was 80.  My mum is 81 next Monday, and her memory and health is better than mine!!  It is truly all down to M.E.

It seems that SO many people have M.E/CFS these days - since the 1980's.  It definitely wasn't an issue prior to then.

Sometimes I wonder if it's germ warfare - you never know do you!!

Seriously though, it is alarming how this dreadful illness attacks so many people these days, but there's still no cure or remedy.

I think more money should be put into research into M.E/CFS, as much as cancer and other debilitating diseases.

If ever I won the lottery, I'd plough lots of it into medical research into M.E.  That's a promise.

It is so good to share symptoms and experiences with like-minded people, as you don't realise how other people have the same experiences etc, you tend to think you're alone don't you.  I live alone, so don't have anyone to share things with.  But even if I did, it appears that not many people are sympathetic to their partners anyway?

You kind of wish it would happen to them don't you, but in honesty, I wouldn't wish it on my worst enemy - not that I have any enemies.

Good luck everyone.  persevere with your GPs, it's the only way forward really.

Take care, Val xx

14

Some really good responses, honest and typical of what many go through if not getting a condition or disease that is commonly known of where near all families have experienced it personally, How many can relate to the comments `we just get on with it``were all tired` etc, mockery and ridicule. even from family members who love and care about you, `its our ......` re neaurotic inuendo, this attitude is sort of encouraged when gps dont diagnose anything, more so when test after test comes back clear, so its down the phycalogical causespath. But there are people with the mentality of, if l dont experience it no one does, if l can do this everyone can, sometimes only those with same can truly understand and empathise, if lucky youll have a close family member who loves and trusts you, despite what gps, tests, scans scopes dont show up, also agree even with diagnosis some dont understand how serious its affects can be. .  l,m also prone to nausea, and have passed out just eating quiche, or taking a prescribed tablet, l think the whole immune system becomes vunerable, and lve also had stupid answers from gps, you wonder, l think some dont look listen or examine you but fall back on text book responses, there are good docs but also useless ones, that is if you get anything other than the obvious. There are laws about patients rights, such as changing gps, surgery,s, seeing post op medical reports, but they all wont abide by them automatically, many will resist and put it back to your attitude, state of mind, sometimes patients go out of surgery feeling worse than on arrival, then maybe question themselves, is it me, even agreeing to anti d,s or councelling, yet deep down knowing its real and physical,  Why would anyone be it family public dr,s even think you,d want to live your life in such a way, no energy, feeling ill, sitting and laying about, not being able to do things you want or need to re  energy motivation enthusiams with your kids, pets, household, social, friendships,  

hols even, energy,s the biggest buzz, 

you feel good achieving things, very down when you dont. Like you Caryn l,m presently getting one infection after the other, cystitus and bronchitus at present, ear ache,s, and also lost weight due to nausea and loss of appetite, on decreasing trips out to shop, l dont push the trolley more lean on it, as for my appearance l dread to think how l look, not a pretty sight, its not a priority now, clean comfortable about as good as it gets, although not vain l used to make more effort to look good. Also true about benafits, many of these unusal conditions that many are ignorant of their debilitating disabling affect are barely acknowledged by benafits agencies, If you can walk and talk some of the time your fit to work, the fact most of the time your fatigued, in pain, ill, turned a blind eye to. l suffered the worst for many years and barely acknowledged by anyone, family, friends, authorities, but several year later got cancer, wow the acknowledgement, support, sympathy, benafits all came in abundance, l had chemo over 6month, radiotherapy, and l was lucky l responded, it wasnt easy, still didnt compare with the suffering of the disease that no one believed in. l,m not making light of cancer which can be horrendous,l was lucky in neither the disease or treatments caused me serious suffering and l responded to remission many years ago, but both long before the cancer and long after it, these immune type rarer conditions affected me worse, my personal experience. Its also taught me never to be cynical or mocking whatever symptoms or diagnosis, at least give people the benafit of the doubt of it being genuine in how it affects them.  l understand abuot the gps for` longtall`, you can  become a problem patient with some for just challenging their words, diagnosis.wouldnt worry about it, challenging and not settling as saved lives. Its finding a gp you can trust and sticking with them,   It is a battle getting recognitiion diagnoses and help, having a stong person support you helps, family or group if one near, all worth it to feel you can improve and enjoy life.  Thats my long rant for the day, Hope you get support advice on supplaments strategies, and med help, and improve as you will. 

15

Don't know where you live, but you need to see an ME/CFS specialist, like an infectious disease doctor. Also, I assume in all that time you've had bloodwork and other necessary tests done to rule out other illnesses.

16

I didn't manage to read all of that Lynne but what I did read made sense. and rings so true in my experience.

Here's a couple of stupid things doctors have said to me:

When I'd been ill for quite some time and after having blood tests I suggested to a nurse and doctor that I might have ME. They both replied that I didn't have it because my blood tests were ok.

There are no blood tests for ME! 

Another surgery and another doctor later. I tried to get a letter of support because of being sick, although I hadn't been diagnosed yet. He wrote back to me saying 'In my opinion sick people should work.'

I'd like to see him do a days work having ME! 

17

Hi Georgia, lol my rant was a bit long, l could write a book, forgotten so many fob off fictions from gps, and nonsense words as if the patient is an idiot or infant,  l often got more info and facts from the pharmacist.

On a serious note, l and quite a few women have had hysterectomy,s for long standing symptoms=suffering, various justifications given, l told l,d a fibroid in uterine muscle, despite earlier laprascope showing nothing, and gall bladder consultant l was seeing at same time telling me `there,s no such thing`, his key hold surgery brilliant, after H symptoms remained, later turned out to be urology symptoms problem, and not unique. Didnt have sites like this then for info and when your desperate-measure,s,  you go for trust and solution. Val on here last week same.  Just 2wk ago rang for appt, system now is gp ringing you back to decide if you can go in or pick up script, as if seeing and examining not important, anyway l said lve a touch of bronchitus and have an anasetic coming up in l0days,for scope, need to be fitter for it, also asked for omprazole rpt, he said ,`l,ll give you different anti b` oh right, what about omprazole, `lm going to give you alternative anti b, l wasnt on anti b,s nor asked for them, but he insisted l have alternative ones to omprazole, duh, thats what l got anti bs.  There are decent perceptive gps, but some not, but think maybe theyre stressed and some losing it, its said a quarter now want early retirement, Think its a lot of authorities systems, too much text book and little common sense,

too many patients with too many problems, many social, but binge drinking ones annoy me, choice.  l wish l could have just a few g and t,s now and again to cope with my health ones, but it would probably finish me off.  Yeh dont we all at times wish others could feel same for a short time at least, or a long time if they dont learn empathy. l.m going to stick like glue to good gp. Bad day today, fatigue, pain, so mini rant, for me anyway. lol, 

18

Mini rant? That was quite long actually.  I'd hate to have to read one of your epic rants!!! 

But I managed to read it all. Yes a lot of points I agree with, especially sticking to my good doctor; I mean with, not to, that would be just wierd supergluing myself to him. Lol

He might not be able to cure me but he has sympathy and empathy and he's willing to learn about ME and to be flexibe with me. He's prescribed certain vitamins I've asked for and thiamine because I found out it might help (and it does).

He's great bless him! 

19

As my son would say, he a big Homer fan, `l7 pages BACK and FRONT

and nothing more guarantee,d to bring it out than docs who diagnose wrong or not at all.  `Great you got a good one and giving you something that helps. Achievement.,

 

20

It is an achievement becuase it took me six different doctors, three different surgeries and several years to find him!!!!  I found him through a pharmacist who suffered from fibro and had been seeing him.

It's always worth asking pharmacists if they know of good doctors. 

Me and my son are big Homer fans too.