Fibro specialists - we need you -

[lizard57]

Norfolk is a beautiful county , open spaces, gentle people, - but it is still mangaging to ignore FM.

It took me around 4 years to get my surgery to acknowledge it existed. Even then I can only see one doctor out of 6, and even he will not discuss anything but medical remedies - and of course loosing weight.

Would anybody like to move this way to educate the medical fraternity and open a clinic for us poor desPerate Fibro, ME, CFS sufferers.

I've had Fibro around 4 years now and I've tried everywhere I know.

Even the 1 so called specialist just says probably and sends you back to the GP

We desperately need a clinc for some proper monitoring and help

Can anyone help!!!!

FiBi

[TheAuthor]

Hi lizard57

I am so sorry to read this and I genuinely hope that some changes can be made to enlighten the good medical fraternity of Norfolk. I have pasted you a link to the [/]FibroAction webpages on Fibro Groups in your area. It may help to contact a group (there are two in Norfolk) and see how they get on and who and where the best practices are? You could also form a group of your own and educate people?

FibroAction - Fibro Support Groups East Anglia

fibroaction-public.sharepoi...

I want to wish you all the best of luck and please let us know how you get on?

All my hopes and dreams for you

Ken

[lizard57 in reply to TheAuthor]

Thank you so much - maybe we can pressure them into action.

[lizard57 in reply to TheAuthor]

Dear Ken - your a lifeline

Good point. North Norfolk needs to make a noise - I think I'll look at that.

Same old, same old - if you want a job done properly ....

Thanks for that - all my best to you and your wife .

D

[Lizzyear]

Hi,

I don't know where you are in norfolk, but I live near Kings Lynn and my doctor is really up on Fibro, she's brilliant and the hospital runs help groups for Fibro sufferers as well. The pain clinic at the hospital is brilliant too, keeping a check on how we are coping and ways of helping. So prehaps it is just where you live in norfolk, because I have just been so very impressed with the medical help and support I have had. I moved from the West Country and feel I have really landed on my feet with all the help and knowledge I have received. Isn't it a shame it's all a bit of luck as to where we live as to the care and treatment we receive. I hope you get the help and support that all us fibro suffers need to help us obtain some quality of life. Good Luck Lizard 57

[lizard57 in reply to Lizzyear]

Thanks so much for your reply, I was hoping someone would enlighten me about other areas. I'm at the other end on the broads nearer GYarmouth but I don't care how far I need to travel it would be worth it.

Thanks so much -FiBi

[lizard57 in reply to Lizzyear]

Thanks so much for your reply, I was hoping someone would enlighten me about other areas. I'm at the other end on the broads nearer GYarmouth but I don't care how far I need to travel it would be worth it.

Thanks so much -FiBi

[GeraldineG in reply to Lizzyear]

Hi, I have been recently been diagnosed and really feel moving to a doctor with fibro experience would be beneficial. I'm kings Lynn based and wondered who your doctor is? Thank you

[sweetthing]

Hi and nice to hear from you.I too live in Gorleston near Great Yarmouth and I too have found the medical profession round here sadly very poor.My gp was fabulous and after years and years of going to her very unwell I was finally sent to a rheumatologist who diagnosed FIBRO and chronic fatigue.The specialist discharged me with a leaflet after being diagnosed and said there was nothing he could do for me.He offered an appointment with the pain clinic for which I had to wait 5 months.The pain consultant was very abrupt and said he did not have a magic wand and whatever he prescribed for me would not work so he prescribed nothing.He kept calling fibro a sleep complaint and that's about it.He offered me an appointment with an occ therapist who would help with pain management and that was it.Ater waiting so long for the appointment my expectations of him were like sky high after reading about so many other people's dealings with a pain clinic.I came home and just cried as I thought what a rubbish doctor as my expectations of him came crashing to below floor level.I feel so disappointed that there is no help around here for us fibro sufferers,and now my gp wants me off as many of my mess as possible to stop me being a zombie and sleeping my life away.Ive had to take ill health retirement from work due to pain and fatigue which is a constant battle every day.Gentle hugs to everyone else out there and thanks for listening.bye bye

[lizard57 in reply to sweetthing]

Hiya sweet thing

Guess it must be just you and me then!

I get more and more wound up when I hear about people like you and I - and since when did we need a 'pain clinic' as far as I knew pain was a way of your body telling you something's wrong?? But now they just tell us to live with it !! - I have the joy of another doctors app tonight - after waiting nearly 2 weeks think I'll have a moan and show her this website and all the others just to see what she says

If you hear of anyone being dragged out of the doctors in Stalham by the police for causing an affray that'lol be me.

I'm gonna take it further now and put in a complaint to the NHS and the MP let's start to rattle some cages - why should we suffer because we live out of London.

I'll keep you posted.

[sweetthing in reply to lizard57]

thanks for replying and really hope the doctors app went well.Hope you didn't come out of the surgery steaming with frustration.Yes it would be nice to rattle a few cages wouldn't it,trouble is once we've left the doctors surgery we are forgotten, actually living with this awful thing is a different story.I am so fed up of being drained of energy, I've forgotten what it feels like to be normal.There must be something out there that could help don't you think, I only wish I could find it.Talk about feeling old I feel a bloody ruin oops!Would be very interested to see if you get a reply from the MP,you might at the moment with all the election talk at the moment.They might even tell you they are going to find a cure , now wouldn't that be nice.keep me posted if you hear anything.bye

[Abcdefg12345678910 in reply to sweetthing]

I was reading your story ,I also live in gorleston and I feel my doctor takes no notice of me my pain is so great at times I can’t get out of bed ,I have my good days but always in pain I just feel so depressed some days fed up of taking pain killers ,my doctor told me I needed to exercise omg I did this and the pain was so bad I thought I would never get over it ,wishing you well take care.

[Abcdefg12345678910]

Hi I live in gorleston also but don’t feel I’m getting much support from my doctor I’m in constant pain I’ve just give up going to him it’s a wast of time gets me down but but there is not much I can do ,take care wishing you well.