How do I get a diagnosis/ assessment and what does it entail?

Hi all. Not even sure I should be here but please bear with me.

I have been going backwards and forwards to the doctors for the last 6 months (although symptoms have been going on much longer) with pain all over, stiff neck, shoulder,hands, feet and ankles. Very swollen feet. Numbness and tingling, sweating, stumbling. Vagueness, confusion, forgetful (not like me as I've always had a memory like an elephant) headaches, tearful...............and so it goes. and you've probably guessed after several blood tests (all clear) etc that I am no further forward.

Without sounding like a hyperchondriac I decided to look up symptoms and they appear to match fibromyalgia.

I am more than a bit nervous of going to the GPs (it's a long story) and feel that I should go again but not sure what to say. I am always concerned that they are not listening and I apologise for being there and try to hurry the process so that I can leave.

Any suggestions would be welcome as I have always been a very active person and really just want to know what's going on with my body (and brain)

7 Replies

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  • The diagnosis can be just as you described some drs are just not willing to accept fibro as a diagnosis cos it's so complicated. I was lucky at 25 i moved and I got a new dr and I walked in with my recurrent chest pain he prodded other places I now know are the trigger points whe he had prised me off the ceiling he said fibromyalgia for sure gave me meds and told me to take gentle exercise even gave me a leaflet for a local support group ...don't give up . if your dr makes you feel uncomfortable change them I have moved 4 times since my diagnosis and found other drs who refused to accept what was written in my medical records so I changed drs. It's your life your health please try and find a dr you feel happy with.

    Helen xx

  • Thanks Madhelen.

  • Hello, just to say the things you describe are all possible within fibro, no blood tests tho will show it up. I suggest that you ask your dr if he/she would test your trigger points - if they know anything about fibro they will do this (like Helen I had to be prised off the ceiling when they did mine) There are I think I am right in saying 18 trigger points and anything over 11 would put you into the fibro range (according to my gp). If however your dr baulks at your suggestion I think you should do as Helen suggests and look for another dr and continue to do so until you find one who is sympathetic to you and understands fibro. When I was first given a diagnosis of "fibrositis" when I was 17 I thought it was just muscle pain that would go on its own. Fast forward 25 years and my present gp did a trigger test (after years of me thinking I was going nuts ) when an osteopath i'd been prompted me to ask and immediately said fibromyalgia - I told him about the "fibrositis" and he told me its the same as fibromyalgia and that's what I had been fighting all the time. It put everything into perspective and I regained some sort of sanity ( some sort ;-) ) .

    I would really urge you to steal yourself and go to your dr and see what they can come up with, but if at first you don't succeed do try again. Best wishes dottii x

  • I have had many symptoms for many years but never knew what the problem was. Despite being referred to (and later discharged) from varying osteo, rheumatolgy and podiatry clinics, no-one had any answers, and X-Rays.blood tests etc showed nothing. I was given cortisone injections, acupuncure, ultrasound therapy,surgery and medications all to no avail.

    Most doctors tended to disiss me as though I was imagining things, and I gave up asking for help.

    Recently however we got a new doctor at surgery who actually listens, so I downloaded a picture of a body, put it into 'Paint' and then drew lines and information boxes labelling everywhere I had pain,or discomfort, plus previously diagnosed 'conditions'. I had 45 arrows!!

    I took it to her and said I had brought it to save her time. That I was aware that not everything was significant, but perhaps she could look at the overall picture and 'join the dots' so to speak to tell me what was going on.

    The 5 minute appointment stretched ed into almost a half hour as she asked questions, and then examined me before making her diagnosis as Fibromyalgia. So far we have found no medication that I don't react badly to,so I am awaiting referral to a pain clinic.

    The picture is now in my medical file, doctor thought it was a great idea, and said it really helped with the diagnosis, as othersow so many things might have been overlooked. What really mattters in getting a diagnosis, is a doctor who will listen, and at least attempt to understand your problems. You might have to be persistent, but don't give up.

    Good luck

  • PS Apologies for many typos, right arm strapped up, so trying to type with left hand only :(

  • Thank you all so much for your comments. I did as Maladjusted did and took a picture with all the areas of pain marked and the new doctor at my surgery said "what do you want me to treat. I can't work miracles" Thankfully he left after only 3 mths and I'm now back with my usual GP. I'll try the drawing with her and possibly suggest that she does the "trigger test" I'm very cautious about suggesting anything as I don't want them to think I don't have any faith in them......even if I don't. Wish me luck and thanks again.

  • Behappy, ask for a referral to see a Rheumatologist. This was the first big step for me and this is how I got my definite diagnosis and then the correct medication for me. You will also have blood tests, the tender point test etc.

    If your current GP is helpful and understanding you might get on ok with her and not need the referral, but it's always handy to bear in mind this is an option.

    Wishing you all the best - please let us know how you get on! Take care :D

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