Do u feel like Ur wasting Ur time vis... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Do u feel like Ur wasting Ur time visiting doctors and specialists?

miss_boo profile image
8 Replies

I've been diagnosed with fibromyalgia 6 years ago now. Last year my illness spiralled out of control. I was falling daily, my nerves went to pot, thought I had m.s. allergies went through the roof, even had paramedics out to help me breathe again. I get chicken pock blisters frequently..and my pain is unbearable. All I ever get is, "its fibromyalgia" my blood was not right, got tested for lupus, came back clear.

I just want help to live at least a little more normal. It's got to the point that I haven't been to see my gp since December. I just get my prescriptions monthly through repeats. I feel I'm wasting each others time now.

I'm at my wits end!!!

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miss_boo profile image
miss_boo
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8 Replies

If you GP isn't helpful then maybe you could book and appointment and tell them how you feel about this or write them a letter ... I did after having to change GPs when my old one retired ... I felt really hurt and upset by the way I was treated the first time I saw him so I wrote him a personal letter , the day he received it he phoned me up, we had a chat and he. Has been wonderful ever since ... If you can't do this .. Can you change gps within your practice or go to another surgery ... I have discharged by my rheummy but not until he had got me aids from social services and an appointment with podiatry , plus I get trigger point injections at my local pain clinic. So it is possible to get good quality of care with fibro ..

Vg x

miss_boo profile image
miss_boo

I didn't even know about the injections. I will definitely look into that. I'm sick of taking meds, im now on cocodamol, tramadol, pregablin, naproxin and atarax for my allergies. All make me dopey and I still hurt. The last time I visited my rhumatoagist he said had gained 6 pounds since last visit and spent ten mins telling me to buy a book off amazon called getting fit in ten weeks, and said I should exercise and diet. He didn't even examine me. I came out crying. Haven't gone back! Lol oh well. Thanku so much for replying. I'm thinking of writing a letter now. Or I may even visit him with my hubby. I can't say he's a bad doctor, it just that he admits he don't know wot to do anymore. X

anbuma profile image
anbuma in reply to miss_boo

my rheumy said more or less the same-gained 11 kgs in 7 years,need to lose weight.when I said only way to lose weight is to get rid of the mass that is my abdomen.ignored me.i had lost weight elsewhere yet total body weight remained about the same.it s not possible to lose weight in one area and gain in another??said same to dr -no comment.

Yeah some rheumys can be useless my third one was the one who got me all the help...

So please get yourself a good GP or sort out the one you have ... Get them then to refer you to another rheummy and your local pain clinic ..... It takes time but once you get everything in place life does look better.. I love my injections as I am allergic to every painkiller except paracetamol... Which I only use for headaches .. Cos they don't touch fibro...

Good luck

VG x

Jjudith profile image
Jjudith

I think many doctors are part of the problem - you get so stressed up because so often you feel that either they don't believe you, or they try to push medicines on to you that you do not want. I've even paid £200 to be given a lecture to the effect that everything that is happening to me I am doing to myself... Ugh...

Devonlady profile image
Devonlady

Every time we get a new trainee doctor I get hauled in to see them. I get the same thing every time, they say I should be seen regularly by Rhymatologist and Neuro and they say they will refer me back then they speak to gp and nothing happens. It is a sad thing but once you get diagnosed with fibro they just leave you to it mainly. I register all my falls with the fall team so it gets on my records but even with the amount of falls I have they just take my blood pressure then send me home again.

My IBS has never been fully inestigated and I have given up bread which has helped but not ever been tested for crones.

Pain clinic say that because I can't follow their program of exercise and that I won't dose myself up to the eyeballs with meds that don't help long term that I don't want to help myself which is just not true. I have changed my life in so many ways, diet, exercise and job. I find it insulting and upsetting to be just left to get on with it.

miss_boo profile image
miss_boo in reply to Devonlady

hi everyone, thanx for Ur replies. Im definitely going to see a new doc and rhumy. I've made it a new goal! I read about a new finding with weight gain and fibromyalgia. Obviously if we can't move much we gain but the item was on about something in our blood making us store fat. can't remember the word but I know its associated with diabetes. (sorry) brain isn't working. twas saying we could gain upto 2 stone in the first year alone. I Googled fibro and weight gain. I also read a new article about fibro affecting nerves in the body, this was also a new article. Thing is a lot of gp's and specialists don't even know about it!

One funny thing...I sat in the job centre waiting for my daughter and I got a twitch and muscle spasm attack, my face went bonkers..I guy sitting waiting to see an advisor smiled and winked at me. he thought I was winking at him LOL xx

miss_boo profile image
miss_boo

Oh yes, about ibs, I've been tested for crones too. It has got so bad I'm plopping (sorry for being gross) out undigested food all the time. Dreadful.

I joined the pain clinic team. They sent me to physio and the physiotherapist signed me off. Wouldn't touch me! It's like taking one step forward and 2 steps back ggrrrr

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