Finally decided..

[Dolphin100]

So pain clinic busy and said speak to gp re pain getting worse.

Gp won't refer me to rheumatologist so I have decided that I will go private to get a diagnosis. Appointment Friday this week.

Best questions and symptoms to list before hand??

Thanks

[LeighBlyth]

Short answer - all of them!

Try to write down all your symptoms. Start making a list now, keep adding to it as you remember things, then write out a more organised list before your appointment.

(my symptom list was very long!).

A full history is important. Make a list what injuries, trauma, surgery, infections etc you've experienced. What things may have triggered/contributed to your pain.

Try to list things in chronological order - where did the symptoms start, how they have changed over time. Things tend to blur over the years so again writing things down as you remember them then organising into a list later is a good idea.

(I used to start my pain list with bad knees age 7, but actually I was hospitalised as a toddler with scald injuries to my neck and shoulders and I think that contributed to my rounded shoulders and restricted movement in my upper body and then I started to remember the pain of movement when I started school - trying to do a forward roll was sore. My first and only attempt at a cartwheel and I went crashing to the ground.... )

Printing out a picture of a human outline and drawing on that to show the painful areas can be a useful exercise. And quite cathartic.

(scribbles all over for me!)

Think about your range of movement and your posture. How do you use your body? Is it in a good position, free to move without physical tensions or are is your body tense and restricted?

[Dolphin100 in reply to LeighBlyth]

Fab thanknu souch I will do that. I have all the hospital letters for the last 4 years so thats a start

[LeighBlyth in reply to Dolphin100]

Definitely take a copy of the letters. The more info. you can provide re tests and previous exams the better.

It's easy to get flustered/distracted/nervous in a doctor's appointment so the more you have written down the better. I know from experience the feeling of "ooops forgot that, didn't ask about this, why didn't I mention ... " kind of thing after I've left the office.

Better to ask a silly question and get an answer than to have something rattling round in your head - and remember this appointment is all about you so make the most of it!

Wishing you all the best,

Leigh

[Dolphin100 in reply to LeighBlyth]

Hi LeighThank you I have copies of all the letters they are requesting theri scam I had done and I will write everything down too before I go so I am prepared.

Thank u xx

[Cat00]

Did they say they wouldn't refer you?

[Dolphin100 in reply to Cat00]

Yes the gp said he wouldn't refer me as I dont meet the criteria. Gp is useless x

[Cat00 in reply to Dolphin100]

I wonder what the criteria is.... I know when I (eventually) got sent I was ticking all the boxes. Other than the unexplained moving pain, I had chronic migraines, IBS, bladder problems, hypermobility, anxiety and depression, Raynauds disease, insomnia...the list goes on and they all contribute to a diagnosis of fibromyalgia.

[Dolphin100 in reply to Cat00]

Not sure but I have a lot of chronic pain that moves, anxiety, depression, ibs, joint pain, muscle pain the list is endless. I decided for the cost and to be seen quicker to just pay and get the final diagnosis. Then.if I need help I can get it. Xx

[Cat00 in reply to Dolphin100]

Yes I think if it helps you move on you should do it, people spend the same amount on new trainers these days.

[Dolphin100 in reply to Cat00]

Exactly. I just want the official diagnosis. I was cleared for Ms as I had no lesions on spine or brain but it doesn't explain what is going on. Hopefully I will get the answers I am looking for. I know this consultant specialities are fibro, me etc so I have done my homework 😀 will keep u posted. Xx

[Cat00 in reply to Dolphin100]

I would fascinated to meet anyone medic who specializes it fibro!

[Dolphin100 in reply to Cat00]

He does I read up xx

[Cat00 in reply to Dolphin100]

I'd love to know how it works out for you! I hope you get a diagnosis that makes sense for you.

[Dolphin100 in reply to Cat00]

I will let you know. Are u uk or somewhere else??

[Cat00 in reply to Dolphin100]

In the UK..

[Dolphin100 in reply to Cat00]

Thats not too bad thenI'm cambridgeshire x

[Cat00 in reply to Dolphin100]

And I'm in Cambridge!

[Dolphin100 in reply to Cat00]

Ooh wow I'm seeing a consultant in Peterborough x

[Cat00 in reply to Dolphin100]

Small world...

[Dolphin100 in reply to Cat00]

Very

[Dolphin100 in reply to Dolphin100]

Finally diagnosed privately by rheumatologist feel kinda numb but even tho I had an idea. Best £220 I spent today ;/ xx