Feeling let down etc

[supernurse999]

I have had Fibro for many years now, a while back went to my docs because back pain and hips becoming very painfull, was not sure whether it was from a fall i had in 2002 where i fell of a ladder and fractured my L3... I arrived at my appt was over and hour late going in, felt it was a complete waste of time, she just kept smiling at me as though i was nuts, said i was not sleeping because i was not tiring myself out enough and to go join gym/exercise group.. then said she was putting me on the Fibro programme again, i only managed 3 weeks last time because we had 3 deaths in the family due to cancer within 11 months of each other. my aunt.. uncle and dad... she looked as though she did not believe me.. I came away feeling upset/ angry etc... And cannot see how this programme is going to help after all these years.. 3 weeks was enough last time i felt like i was at school..

[Angeldancea812]

Wish I had a fibro programme to go on. I have never had any support or training except I do seem to have a more supportive doctor than you. Are there any other doctors in your practice? Are they any better?

[Hidden]

Are you on any meds for fibro I am on dosulepin at night and clonezapam and have gone from not sleeping to getting 7 hours straight... There are meds out there that can help ... Yes I have med induced sleep but its better then no sleep ...

Is there another GP at your practice that you could see... Or go to your GP again with support or write your GP a letter saying how you feel and how you feel she is letting you down and its not helping .. A polite version of those can work wonders I have done all of them and get the best treatment I could now...

VG x

[tweety]

Hi sorry you got problems with Dr I've never heard of a fibro program what's that about I hope you don't mind me asking x

[ladymoth]

I think that a fibro program which talks down to intelligent, often professional patients is no good at all, and in fact may be harmful. If you have the energy, then write a letter of complaint. The system needs re-formulating!

VG's idea of writing to your GP explaining your feelings is a tried and tested one - do try it and you may get a result. If not, go to another GP.

I get fed up with saying this, but doctors get very well paid to look after us, and they need to be held to account if they don't make an effort.

As a group, we need to agitate for decent treatment, and to make sure that we get proper attention.

Moffy x

[Sarah-Jane]

I have a good doctor but he definitely treats me better when my husband is there. Its not that he says much, he just backs me up when I ask him to or adds things I have forgotten. If you could take someone with you, say a partner or friend, they would also be able to help you remember what was said and may have a different point of view to discuss with you.

I too would like to know what a Fibro Programme is, especially when your doctor doesn't seem to be taking you very seriously.

However, not having been with you to your doctor may I ask a sensitive question? It's just that I know I can be very sensitive to people's reactions when its PMT week and can over react, especially if I am tired and in pain. Could you possibly have felt there was more to her reaction than there was? I am sorry to ask, but if you could think about it and can dismiss it, then you need to take someone with you whenever you can. Then make a complaint if you feel you need to.

Write her a letter explaining everything and post it to her - but make sure you read it before you post it so you are sure you say what you want to.

I do hope you don't mind my asking you this. It was not meant to upset you. You need better treatment than this doctor gave you.

Soft hugs

[supernurse999]

it is a group practise and the dr i saw that particular day was standing in.. I am on Amitryptiline but having my meds changed.. I am not saying the Fibro programme is rubbish, i just found that everyone was newly diagnosed and i had been suffering from fibro for my years so felt it was not geared to myself.. and the rhuemy does not wish to see me again..

[mhibbo62 in reply to supernurse999]

Hi Supernurse999.

I am sorry to ask you again, but in your reply you didn't explain what the Fibro programme is.

I would like to know as I have never heard of this and if it is available for everyone I certainly would like to try it!

As we all know, we would all like try anything if it is going to make life a little easier for us.

Thanks.

[gailmarie57]

I finally got a better diagnosis than just the menopause stress or arthritis when my Daughter in Law who herself is a GP, and has the same Dr for herself, said it seemed more like fibromyalgia than the simple explanations, I had been given before.

Now finally I am getting some meds and referrals to pain clinics etc. so the saying two heads are better than one works. I know not everyone is lucky enough to have a dr in the family, but the suggestion of taking someone with you is a good one, more so if they have seen you at your worst. I have read some where that not all Drs especially long qualified ones do not relate to the fibromyalgia as much as younger more up to date ones. As for the doctor who responds to a patient better when her husband is there, he comes across as a typical old fashioned male chauvinistic pig with the attitude of it's the little woman again. I would put him in the bin, tell to retire and find a better more understanding medic.

Gail

[NWG23 in reply to gailmarie57]

I think its more a case of actually having another person there that helps not the fact that its a hubby, it could be anyone I'm sure that's what she meant. I know that regardless of what kind of an appointment I go to, due to brain fog I can't remember much of what's said. Actually I'm having problems atm remembering what's discussed at the counselling sessions I'm having. It helps a bit that my hubby meets me afterwards for lunch and we do a debriefing session then I go home and write down as much as I can and my hubby fills in the gaps if there are any. By the way pain in your hips could mean osteo arthritis. I had a total hip replacement two years ago and I thought my pain was just the fibro!

[gailmarie57]

yes, it is the dreaded osteo, creeping in, but not enough for hip replacement. The muscle pains and aches is the fibro, just lying down to sleep is a nightmare, (if I get to sleep) it feels like I'm lying on a bed of pebbles, no matter which side I lie on just can't get any release if I do manage a little the dreaded kicks and flicks start up, bet I could get top marks for those from Len Goodman on strictly.

There's just no happy medium.