help

[angiexxx]

hi new to this site looking for help advise ect i was diagnosed with bipolar 10 years ago and last year rediagnosed with eupd (emotionaly unstable personality diorder )with severe anxiety and psuedo phycotic symptoms on and off for the last couple of years ive been having bouts of exhaustion so dibilitating ive lost my job my life really ive been to my gp in tears i just cant explain how exhausted i feel all dr does is blood tests and says its all clear my sister was diagnosed with cfs me and now fibra mialga (cant spell sorry )she says the symptoms im experiancing are the same kind of thing just wondering if any of you guys know if it can be a genetical thing or whats wrong with me feel like im alone in a feild screaming but no ones listening to me right now ive taken to my bed im so exhausted i could cry x

[ukmsmi4]

Hi and welcome.

Yes it is believed that there is a genetic tendency with ME, which I guess means CFS and fibro too as they are part of the same family. I know one of my sisters has had ME for nearly 30 years and I have had it for nearly 20. Though I have only been diagnosed about 5 years which tells you how difficult it is to get a diagnosis when it is even known that it is in the family.

In fact I have also recently been diagnosed with fibro too and my sister suspects she has it too as her pains are getting worse. But her ME is so bad she hasn't got the strength to go back to the doctors and be poked and prodded around again.

I'm sorry but you will probably find like me (and probably most other sufferers) it takes years of going back to the doctors with a long list of symptoms before you get a diagnosis. I only got mine when I got so bad I had a massive ME crash at work and I've never been able to work since. Luckily that day I got to see a doctor I had never seen before because she was the duty doctor that day. She has turned out to be the one doctor that seems to believe in and understand the condition so now I stick to her like glue if I need to see someone about ME or fibro related issues (which is most of the time!).

In the early days I spent years continually getting viral infections. But as all they say is sorry it's a virus we can't do anything about it, you get a bit fed up with being made to feel you are for ever complaining. But unfortunately that is what you have to do. I even said to one doctor "Yes I know but WHY do I KEEP getting viral infections. Surely that is not normal". His really helpful answer was unfortunately some people are just susceptible to viral infections. But he wouldn't do anything to investigate further. Needless to say I avoid that particular doctor as much as I can.

I'm afraid I can only suggest you keep going back every time there is something wrong so they can see the issue and try and see a different doctor until you find one who will at least listen and is prepared to investigate further.

Good luck

[lindaam]

Hello. I'm sorry you're suffering such awful symptoms. I myself have dreadful fatigue and have been fobbed off with Fibro/ME/CFS diagnosis for many years. When doing some research online, I found some info which 'switched on a lightbulb'! I remembered that the Dr had 'suggested' taking a B12 supplement a couple of years back, which I had done but no improvement.... I gave up work 7 yrs ago, as I just couldn't cope anymore. By last year, my memory and ability to function was very poor and depression/anxiety was bad. I also thought I may end up in a wheelchair as walking or standing for any length of time was very poor. After doing some research online, I discovered I was probably B12 deficient! I requested copies of all blood tests in the last 5 years. The test showed that my b12 was in the very low end of the range, and my MCV (mean cell volume) was on the large end of range. I had by this time joined the Facebook page facebook.com/groups/B12defi... This is a fab support group, who will advise and support you. They are linked to b12d.org/ which is a charity who has about the only specialist on B12 deficiency. They have helped me loads. I have learned that even tho dr said bloods ok - I was not. I'm much better, since changing the type of b12 I take. All other symptoms have lessened and I can see the light at the end of the tunnel. I like you had felt so helpless and nobody seemed to understand, my pain and stress. NB Do not start supplementing until you have been tested for B12, Folate and Ferritin levels as any supplement will show up in bloods and not give a true picture. Also good to note, in Japan, dr's treat you for B12 deficiency when levels are below 500. Mine were 270 in 2011. Good luck. Doctors don't seem to understand how dangerous low B12 is to some people, so well worth getting checked!!!! You are not alone xxxxx

[Maggie-mae]

Hi Angiexxx

So sorry you are in a low dip just now - even if you have other medical issues, there is no reason for the doc not to refer you for suspected ME/CFS - the fatigue of this serious illness is quite unique : post-exertional fatigue and malaise ie the fatigue comes on later that day, next day or even several days after, along with a flu-type ill feeling. Other symptoms vary from person to person, but can be joint/muscle pain, headache, muzzy head, feeling your legs won't hold you up, dizzyness, tinnitus, IBS etc etc.

Anyone describing this package of symptoms, but especially the type of fatigue, should be referred by the doc to someone who can diagnose ME/CFS. But often GPs themselves will diagnose it too.

I agree you just have to keep asking - Action for ME and the ME Association have leaflets and booklets you can take to your doc. although all doctors now have information on the illness. It's very important, if you do have ME, that you get the correct advice early on but most people find pacing is the best way to deal with it, ie a small amount of activity then rest, working out what works best for you.

With ME, blood tests tend to come back as normal and we have no diagnostic test as yet, but there is more good biomedical research being undertaken now and it's just a matter of time and funding before the puzzle is solved. Also if it is ME, there might be a self-help group in your area for support. All the very best.

[mysmugcat]

Hi, just wanted to sympathise, especially about losing your job, keeping up employment is so hard. Not sure your work can legally dismiss you if you are ill? I'll just write that for now, finding it hard to concentrate. Good luck.