Diagnosis of fibromyalgia

[Jessfoster2]

I have recently been diagnosed with fibromyalgia but no tests were done before hand, no blood tests, no scans, they diagnosed me off a very quick examination. I have asked for further testing to be completely refused. Has anyone had the same?

[PenelopeClearwater]

Hi Jess

Sorry you’re not getting far with the GP.

The blood tests and scans are just to rule anything else out, so the actual “test” for fibro is down to ticking off the symptoms and performing a pressure point assessment. It’s not an exact science and is usually landed upon after ruling out everything else.

I’d say you’re more than entitled to a second opinion.

I hope you get some more answers soon 💙

[Jessfoster2 in reply to PenelopeClearwater]

I have been back to my gp 3 times (online econsult) since getting a diagnosis, and asked for tests to rule out other conditions and he has completely refused and sent me a leaflet each time. I have asked for a second opinion too but I haven’t got anywhere with this. I mentioned arthritis as my mum suffers with this to be told I am to young for this. I’m 31. Everything I have read says that other tests should be done before hand but in my situation everything has been done backwards

[PenelopeClearwater in reply to Jessfoster2]

Your GP sounds rubbish! Are there other GPs at the surgery? You absolutely deserve proper care and it sounds like he’s just fobbing you off.

As for being too old for arthritis, even childhood arthritis exists, so I do t know what he’s basing that on.

If there isn’t another GP, I would suggest complaining to the surgery and maybe moving to a new one.

I’m just sorry you’re having to fight for your care - I have had a very similar journey and it really isn’t fair x

[desquinn Partner Volunteer FMAUK Trustee in reply to PenelopeClearwater]

The pressure point test is no longer good practice and not part of the criteria but some older doctors still use it.

However blood tests for inflammation and anaemia for example should be run to rule out other likely conditions. You are not too young for arthritis.

[PenelopeClearwater in reply to desquinn]

Hi Des 😁

I wasn’t aware of the pressure test being out - my pain management consultant diagnosed it based on that… but he was rushing through and I expect he probably based it on all my other symptoms, too - difficult to keep up with them when you feel like this 😅

I had CFS suggested as a possibility by my GP, but I don’t feel I fit enough of the symptoms - fibromyalgia, however, I tick every box.

[Bookworm7]

Hi Jess, I am exactly the same. I had a liver transplant almost 5 years ago now, I was ok for a year or so but then started with all the usual fibre syptoms, my liver team did a lot of tests and ruled out all the things that could be related to the transplant and then told me to go to my gp. This is where our similarities lie. It's so frustrating not getting any definitive answers I was just offered drug after drug and talking therapy which I'm yet to try. I'm having quite a good spell at the moment but when I have a flare up I couldn't even write one line of this reply. I know I haven't been much of a help to you but just wanted to let you know you are not alone in your plight. Take care and look after yourself. xxx

[Yassytina FMA UK Volunteer]

Hello. 1st time I have read here a diagnosis without bloods tests to rule out out any other conditions that may be going on, if you are still not getting anywhere can you ask to see a different doctor? Most doctor s I read will do bloods 1st so I can understand your frustration.

[Jessfoster2 in reply to Yassytina]

I am going to be putting a complaint in, I have asked 2 times now for bloods or some kind of test to just be handed a leaflet

[Jessfoster2]

I have been told they diagnosed it on examining me which they only touched the inner elbow and rib no other area. The reply I had from my gp I found was quite rude, I am going to put a complaint in to nhs England. Thank you everyone for your reply’s

[Cat00 in reply to Jessfoster2]

I would write to the practise manager and complain. You should have bloods, they don't cost much for the surgery to do and if it is arthritis and not fibro you will need treatment.

[Gaballetto]

I would say blood tests are a must, to rule out other, treatable problems. I know I had my thyroid assessed, and was checked for evidence of Lyme's disease among many other things by blood test, and had xrays of my spine, hands and feet, before a fall-back diagnosis of FM was made. If you do have something else that is treatable, you will have to live your whole life without treatment! That GP sounds verging on negligent to me (I'm not a doctor or lawyer). Plus, if you are a woman, it is worth consulting a menopause specialist in case lowered hormone levels are playing a part in your symptoms.

[saj01]

Hi Jess, I can appreciate your concern. If nothing else, they would normally do blood tests. The reason being is that fibromyalgia doesn't normally show inflammatory markers, whereas polymyalgia normally does... they are 2 different things- although similar is some respects. Plus, it is possible for someone to to show a combination of both symptoms.

Confused??? Not surprised- the experts can't agree on whether it's neurological or autoimmune.. Some even think it's all in our heads!!!.

Mine showed no inflammatory markers, but I'm now showing polymyalgia symptoms as well...

If there is a different Gp that you could see, it would be worth asking again if they could do some blood tests, to eliminate anything else and put your mind at rest.

....just something else to bear in mind is your age. Fibro generally tends to affect younger people, whereas poly tends to affect older people.

Take care x

[Sarahvit]

Hi Jessfoster2, sorry you had that bad experience with your doctor. Most doctors rule out other conditions that could cause the same symptoms as fibromyalgia. I had lots of blood work, tests and scans done including the 11 out of 18 trigger point test done. This was back in 1994. I know this is highly controversial but I have been involved in research studies on fibromyalgia and ultimately had the FM/a blood test which gave me tangible validation on paper that yes fibromyalgia is real and not a “catch all diagnosis” that some doctors believe that is what fibro is. I would find another doctor.