Fibromyalgia Action UK
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I'm confused as to why my GP hasnt said i have ME, yet my last visit to the gp they told me they are refering me to the ME clinic?, I was in tears and so upset I just accepted it and left the room feeling some what relief they are doing something, Yet when ive researched ME, apparently this should show up on an MRI Scan, i have had one but they just said at my follow up apt my scan was normal, all my symptoms were inline with fibro, so i'm not sure what the heck is goin on...??????????????

17 Replies

I didn't think there was a test for ME.

people with fibro often have chronic fatigue as an effect of it.

hope someone will have a better answer for you.

I'd be interested in what the ME clinic could offer, please let us know.




Thanks Sandra, I will let you know when ive been to ME clinic. Not sure how long it will take to get my apt thrugh. The ME is as complex as Fibro, apparently it does show up on a MRI, theres different types.. i need to start asking questions. Our surgery is not that good to be fair. Its frustrating. I'm planning going to college in September to do my CIPD, I want to be a HR Officer so i need to be clear in my own mind that this condition can be managed enough for me to work and have some quality of life finacially aswell as mentally. I'm 44 now, i cant afford to not work but neither do i want to keep taking jobs for the sake of having a job.. oh the joys of life eh lol.. xx



I was diagnosed with ME in the 1990's following normal brain scans (well they looked at the scan and said they couldn't find anything : } ) by a Doctor who was visiting a patient next to me and saw me and told them that `I had all the symptoms of ME as he himself was a sufferer. After that at least I knew what it was called but still don't know how to beat it some days.

I have severe Arthritis and a few other things but have not been officially diagnosed with Fibro (and i don't really want the diagnosis after what those with the diagnosis suffer).

Sorry for not helping but I think we are all different and that is the problem.

Take care and kindest regards



Hi you have helped, as you say you can have a possitive diagnosis for ME even with a normal scan... thats a big help knowing that because i started to think my gp was going a bit mad lol. thank you xx


Hi eversohappy, I've had fibro for yrs and lately even though I'm on all right meds I'm getting worse!!! I've been reading about me and I have most symptoms of that as well as all fibro symptoms ( I think the two are similar , !). I feel the fatique is so much worse , I can't do half the things I could last yr!!! I'm so tired !!! Completely exausted its knackering writing this !!!

I've for hospital later today had shower 6am had to lie down till8am before I could dry hair and dress !! Then I lay down till 9.15 and now will lie down again when I've finished this will leave for hospital about 11

My point being there's no way I could shower the get dressed then leave the house !!!!!

I could do that few yrs ago ! Yes I was In terrific pain but if I needed to go out I could

Not anymore !!!!! I wonder if I should say anything to dr about m,e. ??? I don't want to be told I'm telling them how to do THIER job !!!! I n fact I can't feel with the confrontation !!!!!!

Should have the energy to put my point across ??????


Sometimes you do have to tell them how to do their job, I know from experience, Ive worked for GP's for 6 years and I also have a son with Ulcerative colitis, they didnt listen to me when i told them he was ill, i had to keep at them. So my fav GP and friend out of work sent him in for tests, and hey ho, They transfered him to Sheffield Childrens and diagnosed severe liver and bowel diseace, I had the same with my grandaughter, she was diagnosed with Epilepsy age 6 months, from 4 weeks old we kept telling them something wasnt right.... it was the tone of her screaming. Her lips would go blue and some idiot told us she was teething!!!A+E even contacted my daughters baby clinic and they had a go at us for being over protective!!! Untill one visit to A+E she had a vacant episode and lips went blue, they rushed her to resus and hey presto, they did MRI, EEG, and she was diagnosed with front lobal Epilepsy... if I had not been as persistant as i was she could have suffered brain damage as we were told at Sheffield childrens hospital. So you can imagine the *ollocking i gave the health visitor, she couldnt opologise enough.... I decided to let it go but told her if any good was to come out of this experience then to listen to family's concerns, dont assume they are god and know everything. Im a big believer in instincts, and one thing a mum has is fantastic instincts!!!



Hi , I think I had all the symptoms of ME ten years ago. I was exsteemly tired and couldn't do much, this was following glandular fever , I was really poorly for two years solid , doctors just kept perscribing antibiotics I was sure it was ME. I couldn't face anything cut the grass whatever needed doing it was a real effort. I lost my job and thought I was dieing of some unknown desease . They kept doing routine tests and gave me iron supplements . I personally should of really played up but I had a six year old and felt to tired to play up about anything I just wanted to sleep the clock round . I'm not sure how ME effects people but if its like that and can come and go, then I defiantly had and prob still do have ME. X.


HI jjojay, when i was told i was being refered to ME clinic my symptoms were fellings of just been to the gym for 6hrs, My arms felt like they had lead weights attached to them. Getting up and by the time i had brushed my teeth, had a wash i would have to lay down and i could feel my pulse racing in my stomach. Its hurrendous, I even think the fatigue is more of a problem for me than the pain of fibro.



Fatigue is my most used word ,,, lol,,, I can't even get to the top of the stairs without my thighs aching , my pulse races I just go straight to my bed lay for half n hour before I can get up and go hang the washing out . It's not everyday tho thank goodness but it used to be bad ten years go it was extreme . It's my belief that ME fibro MS Lymes and a few others I can't just put my name on right now, are connected, I wouldn't be surprised to see something sometime in the near future connecting them. Because I've seen so much literature and read so many people in chat rooms discussing the same symptoms. X


Hi all , I agree the fatique is so bad !!! Any little thing i do I'm soooo tired afterwards

I push myself to live a bit of a life. Eg going out for a coffee and doing bit shopping but I would have taken 6 gabapentin and 6 dyhdrocodine before I can do that !!!! And then its only couple times a week !!! I've been hospital today and in knackered !!!! Trying to diet ( not doing very well ) and slimming clubs tomorrow and I'm trying to build up effort already !!! I just can't up and go !!! And to go somewhere two days on the trot is soooo hard work !!!

Every effort to loose a few pounds I wonder if its worth it ?????

A dr told me yrs ago to whatch my wieght because once your over wieght Its ten times harder for us to loose it !!!! How right he was I've got sone and half to loose !!!!!!! And all I want to do is eat chocolate and cakes !!!!!!!!! Couldn't care less for normal food ????? Only sugar ???? Is anyone else the same ???? And yes I'm going to tell gp I think I've got M.E. as well !!! Wish me luck !!!!!!!!! Take care out there xx


Some people cannot loose weight no matter how they try , I'm this book I've been reading about fibromyalga , they is a paragraph dedicated to weight loss and weight problems due to medication and the function of organs suffering with this condition , it's also written that other related ailments that run along with fibro. It's incredibly interesting. All my family are of slight build and I am the only one whom suffers with weight problems . I'm of mixed heritage and the Indian and Jewish background are all pretty slight builds . I know now it's this condition because up to 7 years ago and this is not due to my age believe me , there is a fat pad ,, yes that's what they call it in this book it's sooo right because it just goes across my middle and it don't matter how much weight I loose its still there. It's extra fat and it hangs down there's no other weight it explains it all in this book. It's extremely hard to get rid of. Just eat healthy if it stays there there's no point in getting upset. I don't i just eat as well as I can . Never starve yourself it's the worst ever thing you can do . Just stay focused on eating well and healthy. There is some connection to this condition and its complicated to explain there is a way to burn out this so called fat pad. But to be honest I haven't gone into it much as yet because I am ok with my fat pad and not too bothered as I am contented at the weight I am . I know it shouldn't be there but what the hell. It's enough been ill without getting upset over that too, I won't accept that everything is down to weight either it's so easy to look at someone n say, we'll they are overweight , you can take a slim person and an overweight person they have the same condition and symptoms. If you eat well and healthy then that's the best anyone can do. My advise stay away from sweet stuff bread and any bad carbs. Just eat the good carbs the ones your body can use. Only usable natural sugars. Stay away from processed meats and processed foods. You feel better really quickly and your body will use everything it needs . One tip my mom gave me was not to eat meat and potatoes on the same day as our body's can't digest them as easy. Stay away from anything that makes you very windy too as the gut is not happy digesting it. I've used this for the last seven years it's really good advise. Eat more meals less on your plate instead of three meals a day have six just half your quantity . It does work honest my mom is 77 and is slim she does yoga and knows her food well. I hope I haven't written an essay, sorry , I just sympathise with you because I used to worry about everything in connection to feeling ill and gaining weight , I don't anymore now I understand this condition , don't worry about your weight , x


My Grandson has been attending an M.E. clinic. They look at how you pace yourself, diet etc and try to give you strategies to cope. They describe M.E. like a car battery. A normal car battery starts the engine, runs the wipers. cd, Bluetooth and so on, but it charges as the engine runs thereby maintaining a full battery. In ME. The body's battery develops a fault and never fully charges. Therefore not only do you not have enough energy to run the body efficiently, you have no extra energy to do the fun things in life. And because the battery doesn't charge fully when depleted you can never get back on top. This made perfect sense to me. Makes it easy to explain to others too. So far they have not been able to trace the fault in our batteries, but I believe it is biological and possibly linked to our endocrine system.


Oh thank you for the info, Does your son feel like its educated him enough to do anything different? Im up for anything and I intend taking my husband with me. He seems to think it's a joke, and his sniggering laughter just makes me feel like a fake. I even stopped all meds to see if it was all in my head!! silly i know, I paid the price for it. I went down hill big time. I stopped my pain killers oneday, and weened myself off the gabapentin over 4 weeks. It took me 4 weeks to get off everything by that time I couldnt even walk my dog, "whom Id walked twice aday for 3 years" even after a 12hr night shift" or up at 6am b4 I did a 12hr day shift... Nothing could keep me from spending time with him, but that did !! What a silly thing to do. I wouldnt reccomend it, But i had to see if my hubby was right and maybe it was all in my

Well it obviuosley wasnt in my head because ive never recovered from that silly mistake, 600,000 sufferers cant be wrong. My husband was the one that was wrong, this is why i'm dragging him with me to the ME clinic see if they can convince him its real.



Thank you all for your advise , it makes sence the way you've explained about the wieght and about the energy levels I am going to use both of these reasonings when I have to explain myself to anyone !!! The way you've explained it will definitely be understood by non fibro and m.e. sufferes !!!!!! Because as your all aware it's soo differcult to get any understanding out three !!!!! I certainly have the FAT PAD and have had one all my life ?

!! plus the UNDER CHARGED BATTERY !!!! And I've also thought about stopping all my meds as well !!!!! I won't be doing that now thanks to eversohappy

I have to go to gp next wk I've been on morphine patches for well over a year and this last few weeks I've started having reactions to the sticky parts and im marked for days after changing it !!! They were helping a little too !!!??? I'm also on loads tablets as well but after a while your body gets used to them and I've had to go stronger and stronger !!! I felt the same that its all in my head ??? But as you say millions of people can't be wrong can they ??

Take care and thanks again for you valuable advice xxx


He has just been to see a Kiniesiologist who said his hormonal system is completely out of sinc. He has started on supplements to sort out his adrenal glands (it's a week now) and he is noticing a slight difference. We see her again in a weeks time when she is focusing on food intolerences. The third visit will look at emotional issues. Fingers crossed.


My sister has M.E. was diagnosed in 1980s was in a wheelchair for 7...I have fibromyalgia..but you can have both its very similar I told her what she had 4the hospital..she only got gisgnosed after collapsing at work..there isn't any real transistor they don't know what causes it and no cure till they know what causes it there will be no cure...I can't stand the thought of being like this forever.


I know its crap, I would say the ME bothers me more than fibro, at least i can take strong painkillers for fibro, ME theres nothing u can do other than live the life of a snail and rest lots. Thats not my idea of living life. But on the flipside, docs told me i prob had MS, So having ME is better than MS.


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