Fibromyalgia Action UK
39,181 members51,361 posts

Diagnosed at last but what now?

Hi,finally had my appointment with a rhuematologist (yay) and have been diagnosed at last with fibromalgia but feel as if the long wait was a waste of time.My rhuematologist basically did the tests,told me yes i did have it,then told me to chuck away my stick (as if i use it for fun) or i would need 2 sticks then a wheelchair and suffer back problems (as if i dont already) ,stop taking my medication ,including anti-depressants,join a gym and lose weight.He dictated a letter to my GP saying as much,bunged me a leaflet and that was it.Feel totally let down,was hoping for some understanding and better pain relief -have made an appointment to see my GP but am so worried he will stop my meds-i feel worse off now than before i went :( thanks for listening,gentle hugs to all xx

3 Replies

It seems that none of the rhuematologists are realy interested in fibro

Its as if they can't be bothered and we are just pests I think that it's because

They just don't know how to treat us because we all have slightly different

Things and because its not life threatening don't take it to heart they are all

The same.

For you it's having to get used to it and accepting that fibro will change your

Life it's a kind of grief letting go of what your life was and it's very hard

As in your head you can still do the same, but in practise you can't.

If you find that your stick helps you then use it, the only problem

With this is if. you are using it and you have not been shown the right

Way, or if you have not been measured for it. in this day and age

No one has to be without pain medication, so if your doctor stops your

Medication which he will not do then ask to go to the pain nurse in

Your hospital they can't say no to this you have a right to go. He will not

Stop the medication so don't worry.

As for anti depressants most of us take them not always because we are

Depressed but because it it makes the seratonin in your brain help

With the pain of fibro it might be that you are not on the one that is

Recommended for fibro.

And it is thought that gentle excerzise helps fibro, I know it's an effort but

Even a short walk helps a little I could not go to the gym as if we don't hurt

Enough without the hurt of the gym

For your weight I don't know if you are over weight, you have to take

One thing at a time, some of our medication makes us put on weight.

Don't take the rhuematologists to heart they are all the same.



I agree with more or less everything that Vivian has said, apart from the bit that all Rheumatologists are the same. They are not all the same, personally I have had positive responses to my Fibromyalgia. I know that I am lucky & not everyone gets the same response, but my initial diagnosis was given to me by a Fibro specialist at a Rheumatology hospital that I was working for in the records department of a teaching & research hospital in the midlands where I lived for 10yrs, then back in Wiltshire I am now under probably best & most reknowned Rhuematology hospital in the country.

There are always going to be good & bad in the field of Fibro & other similar conditions, there are still so many Dr's, GPs & other practioner's that either don't or won't try to understand it & so right it off as something that isn't quite as it seems.

However, the good ones are out there & sadly it is just a case of finding them, which isn't always as easy as it sounds.

I have had the other side of the deal, where something is going on somewhere in my body & is overlooked because it is simply put down to the Fibromyalgia, this makes me very cross.

It happened to me last year, when I kept going back to my GP complaining of pain & sluggishness in my right shoulder, he just kept saying it's part of the fibro, I kept telling him that it wasn't & that there was something not working properly.

Eventually, I was admitted to my Rhuem's hospital for intensive therapies & coping skills to help with the fibro & they go through everything with a fine toothed comb. I told them about my shoulder & they examined it & found there was a problem with the Rotator Cuff. I had a steroid injection into the cuff & after a few days the joint was working properly again & less painful ... Unless fibro chose that part of my body to throw the pain at ;)

Don't dispare Myagi, you have got your diagnosis, that#s the first hurdle over with

Sorry that this is a long post

gentle hugs to all

Jane x


Thankyou so much both of you,i am felling a little calmer now,and yes i do have my diagnosis after around ten years so thats a positive.i am overweight and am trying to tackle that,and walk to work each day,(20 mins there,40 on the way home !)and thats as much s i can cope with.A great deal of my pain is in my legs and feet,so thats why i use the stick,but i dont have it all the while,only on really bad days.thankyou again,xxx


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