fibromyalgia

gentleman

For many years i have suffered with pain absolutely everywhere all over my body .Iam 49yrs old femal(really feel 90 some days !).At last after plucking up courage to say to my doctor "no , do not think it is just stress and for my own sanity you must refer me " I have been told by work i would be finished on health grounds if i do not return this monday.Due to the pains and lethargy i have suffered badly with depression and been off 6mnths so i do understand thier comment .However to get to the point ,indesperation i turned to the web and looked up pain .Fibromyaliga seemed to say YES at me .Anyone out there with this ? sue x

dreamdaisy

There are many fibro-affected people here, but really you need to be properly diagnosed. Perhaps you should consider asking your GP to refer you to a rheumatologist, and start keeping a diary of symptoms and discomforts, when it starts, after what it starts, how long it lasts etc etc etc. Diagnosis does not happen overnight either, it can take a while to fully interpret and understand the symptoms. I wish you luck with it all. Dreamdaisy (who doesn't have fibro) (yet).

barbara12

Hi |Sue
I think Fibro is quite new, some docs dont even recognise it, like dd said its take a while to put names to all this pain, I havnt got there yet.
I do hope you get your questions answered very soon then you can get the right treatment, it is half the battle.
There are a few people on here with fibro, hopefully they will be along soon.
Good luck
Barbara xx

2010rainbow

dreamdaisy wrote:

There are many fibro-affected people here, but really you need to be properly diagnosed. Perhaps you should consider asking your GP to refer you to a rheumatologist, and start keeping a diary of symptoms and discomforts, when it starts, after what it starts, how long it lasts etc etc etc. Diagnosis does not happen overnight either, it can take a while to fully interpret and understand the symptoms. I wish you luck with it all. Dreamdaisy (who doesn't have fibro) (yet).

many thanks for ypour reply .i have been referred to see a rheumotologist ,had all the blood tests for osteo and rheuo that came back negative .I have the pains on/off most days and have looked at what may cause pain but to no avail.My gp said i would be having an MRI scan and a CAT scan and go through a process of elination .What ests would they be ? :

2010rainbow

barbara12 wrote:

Hi |Sue
I think Fibro is quite new, some docs dont even recognise it, like dd said its take a while to put names to all this pain, I havnt got there yet.
I do hope you get your questions answered very soon then you can get the right treatment, it is half the battle.
There are a few people on here with fibro, hopefully they will be along soon.
Good luck
Barbara xx

How long have you been waiting for a diagnosis and do you know what the treatment would be .I feel so fed up .I recently became a grandma for the first time and feeli am missing out on those early years with my grandaughter.

annie_mial

Hi Sue, I was diagnosed with fibro by the Rheumatologist last week, he's given me amytriptiline for night-time. I've had no benefit from it as yet, but he did tell me it takes some time to work. Like you I have pain everywhere, but I also have several other arthritic conditions which doesn't help.

Annie

barbara12

2010rainbow wrote:

barbara12 wrote:

Hi |Sue
I think Fibro is quite new, some docs dont even recognise it, like dd said its take a while to put names to all this pain, I havnt got there yet.
I do hope you get your questions answered very soon then you can get the right treatment, it is half the battle.
There are a few people on here with fibro, hopefully they will be along soon.
Good luck
Barbara xx

How long have you been waiting for a diagnosis and do you know what the treatment would be .I feel so fed up .I recently became a grandma for the first time and feeli am missing out on those early years with my grandaughter.

Hi and snap, I have two granddaughters, it is hard when you are in pain, I have waited at least 18 months .
I recently had a really rubbish first rheumy appointment, so I am considering seeing a private one, hopefully things will move on.
I hope you get some relief very soon,
Love
Barbara xx

2010rainbow

thanks for your reply.When me and my husband went last week to the GP ,s we ased about going private he said it would cost us enormously .Have you been given any ndication as to cost .? x

tillytop

Hi Sue and welcome to the forum.

Love Tilly x

gentleman wrote:

For many years i have suffered with pain absolutely everywhere all over my body .Iam 49yrs old femal(really feel 90 some days !).At last after plucking up courage to say to my doctor "no , do not think it is just stress and for my own sanity you must refer me " I have been told by work i would be finished on health grounds if i do not return this monday.Due to the pains and lethargy i have suffered badly with depression and been off 6mnths so i do understand thier comment .However to get to the point ,indesperation i turned to the web and looked up pain .Fibromyaliga seemed to say YES at me .Anyone out there with this ? sue x

woodbon

Hi Also the trouble with diagnosing Fibro is that it dosn't show on a test, so often its done by testing for other things and if they show nothing and you have the symptoms of fibro then thats what they diagnos. Its something that my GP has mentioned may be decided for me in the end but, 2 years on, they still can't make up their minds. Its frustrating, I know.

People ask me what the problems are and I used say the things that have been found like carpel tunnel oa etc, but now I just say Arthritis and most non medics are happy with that!

I hope that you get a diagnosis soon, and maybe a simple test will be found, could life be that simple? Doctors can be so unfeeling. I've had some lovely doctors and some horrors! I hope you get on and find out some information that will help you.
Love Sue

tillytop

Hi Rainbow - and welcome.

Costs may vary but I have paid in the past and I think it was about £150 for a first appointment and £100 for each appt thereafter. If you choose a consultant who also sees NHS patients you can hopefully get referred back to the NHS after the initial consultation - that way you don't end up paying privately for any blood tests/xrays etc which can get frighteningly expensive very quickly. And, from experience, I can advise that the NHS can be a bit funny about dipping in and out of NHS care. So if you do see a consultant privately, and he writes to your GP requesting prescriptions or further tests, do check that they will be done on the NHS - because I have been charged in the past for tests done by the GP because they were requested by the private consultant.

Good luck!

Love Tilly x

barbara12

2010rainbow wrote:

thanks for your reply.When me and my husband went last week to the GP ,s we ased about going private he said it would cost us enormously .Have you been given any ndication as to cost .? x

Hi you can pay the initial fee...I am told between £75 and 150, then you can be referred back to the NHS, my hubby did this with his knee, everything was fast tracked

minky67

Hi Sue, Fibro is quite difficult to diagnose, my pain clinic dx me last year. I also have OA (this doesnt show up in blood tests) & other conditions all linked to Arthritis.
The test for Fibro is a trigger point test, they press on certain spots on your body & can tell from this & related symptons, whether or not you have Fibro.
The main meds for treating it are gabapentin or Pregabalins,these are maining used for treating the nerve pain & mine have also helped me with early morning stiffness.
Amitriptyline for sleeping (relaxes your muscles)
Painkillers (to many to name)
I also have meds to treat IBS (linked) plus various others for other bits of me that my body doesnt like

I did a piece on Fibro on LW a few weeks back if you can find it. Its lists a lot of information on fibro.You could try looking for that to see if it helps.
try not to worry as it might not be this but once you get a proper dx then you can deal with it & get the proper treatment making life a bit easier.
Let us know how you get on.
debs

frogmorton

Hi Sue

I dpont knwo how I missed you :oops: So sorry, but I am so gald you found us and this lot have (as usual) been great in giving you advice.

I hope you get your tests soon- yes it is a process of elimination, but as Debs says there are pressure points they test too - and they know straight away usually from them

My Ex MIL has it too and i downloaded the A/C leaflet for her - she found it so usefull as she had thought she was going MAD!!

Hope you fel better soon and get to the bottom of it all

Love

Toni xx

carola

In the beginning I went private 'cos I was still working then.

My initial consultation was £250 + £120 for a steriod injection. My next consultation was £200.

The private dude told me what tests to have done and I then got my GP to do them. I then picked up the results and took to the private dude again.

I am glad I paid out as it started the ball rolling quicker whilst awaiting my first NHS rheumy appointment.

Good luck.