Frustrated at mis diagnosis

[Leanne89]

Have been waiting on hospital appointment for a rheumatologist for a year and when eventually saw one was told that they can't diagnose fibromyalgia as there is not enough information on it - she said that maybe in 10 years it will be a different story - sent away with diagnosis of osteoporosis arthritis - sooo let down

[Hayesider]

Hi Leanne,

Fibromyalga is a clinical diagnosis, confirmed by touching certain points in the body. Most GPs should be able to do this, the younger ones are better, as their knowledge is newer.

There is good guidance on the NHS site re Fibro, Google and go to the NHS site here.

nhs.uk/Conditions/Fibromyal...

From the above site:

For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas

your symptoms have stayed at a similar level for at least three months

no other reason for your symptoms has been found

The extent of the pain used to be assessed by applying gentle pressure to certain "tender points", where any pain is likely to be at its worst. However, this is less common nowadays.

Hope this helps, ask GP to refer you to a different consultant. My wife changed from hers to mine, as her consultant didn't like the fact my wife's skin was in a much better condition than hers, made it very plain in body language, my wife is 20plus years older.

Fingers crossed you get somewhere, perhaps find a method of diagnosis, and rake it your GP. There should be a method of emailing into your practice, send the link to your GP asking them to read then make an appointment.

Good luck and keep us posted on how you get on.

Love Hayesider, with you xxxxx

[Leanne89 in reply to Hayesider]

Hi Hayesider - thank you for your concern in this matter - the link is very helpful and I am by no means going to let it go as I have six tender points which relate to fibromyalgia - also have dry eyes, dry mouth, IBS, which all relate to fibromyalgia - once again I sincerely thank you for your information x

[Sorebones]

What??? Rubbish!!! Find another rheumatologist 🐸

[Leanne89 in reply to Sorebones]

Can I actually ask my doctor to refer me to another rheumatologist as I am not pleased with decision ?

[Hayesider in reply to Leanne89]

Hi Leanne,

You won't know until you try, but think there should be no problem.

Glad info helpful, your catalogue sure fits Fibro. I have IBS, RA, Sleep Apnoea, and was told would get Fibro as a result.

Hayesider xx

[Leanne89 in reply to Hayesider]

Thank you Hayesider - will try try and try again as William Wallace did lol - hope you are having a reasonably good day x

[Sorebones in reply to Leanne89]

Lol! Look where he ended up! Possibly not the best comparison, but I love it! Very patriotic 🐸

[Sorebones in reply to Leanne89]

It would be worth a go. Problem is that when you get referred to the local hospital you can't choose your consultant. I had to go private to find a consultant who had Fibro listed as an interest in her profile.

Have a chat with your GP. Explain what's happened and tell her that you know what you were told isn't true! Makes me wonder if the consultant had ever heard of the tender point test! Don't just accept the answer of an ill informed doctor 🐸

[Mad_scientist_ in reply to Sorebones]

You can ask for a second opinion. A friend had to do this recently as her diagnosis changed from one type of MS to another which has a much better prognosis and treatments.

[Mad_scientist_]

The tender points are used less as a diagnostic tool now. Its more about multi quadrant pain, how long it's lasted, the level of pain, chronic fatigue and ruling out out other causes.

Given that, what the rheumatologist said about diagnosis is rubbish. Get a second opinion, but maybe do more research about osteoporosis and arthritis in the meantime as osteoporosis can cause pain in multiple joints and arthritis can flare like fibro does. IBS won't be used as part of the diagnosis as you can have it without fibro, as well as it being a co-condition.

I'm not a doctor and I don't know you or why you are desperate for a fibro diagnosis, but have you considered that you may not have it? I wish I didn't have it but know a lot of people have to fight for a diagnosis.

As someone with a medical/science background who knew nothing about fibro a few years ago I've researched it as much as possible. I've done the same for several other conditions, including osteoporosis and arthritis which my mum has (she has osteoarthritis rather than rheumatoid arthritis- both of which I learnt about at uni), which is why I've suggested learning more about them.

Good luck.

[Leanne89 in reply to Mad_scientist_]

Thank you for your information - will certainly take more time and look into osteoarthritis - just finding it difficult as I really feel doctors are taking a back seat in diagnosing fibro - hope today is a reasonably good day for you

[Hidden]

Do you have a follow up appt? Could you ring secretary of consultant and ask if you could have some physio? a good physio knows what fibro is about, a physio could arrange some hydrotherapy, don't walk away with this answer, some rheum. don't know much about fibro because they haven,t studied it and so give out negative response to cover their inadequacies. Have you seen you g.p since the rheumo appt? ask g.p to refer you for physio help..Osteoporosis needs looking after on its own really. Did you have the Tender Points test? a good physio will do this-then you will know if you have fibro/cfs..

[Leanne89 in reply to Hidden]

Have not had a follow up yet from GP so will wait and hear the outcome - had physio last year but really didn't help much - will post outcome - thank you

[Hidden in reply to Leanne89]

Sorry if you didn,t like the the physio you had, I have to say my 2 physio one close to home and one at MRI were I workd) have both been super looking after my needs for pain relief..If you have a good mate who would go to the local pool with you that has a Jacuzzi, just go regular and soak in the hot bubbles-its heaven for fibro and OA. I have found now that I have retired getting out more is essential as I was becoming a couch potatoe, my mates are at work my kid are and so are my family and so in the day time a nice Jacuzzi away from the kids in the main swimming pool..

[Hidden]

As others have said it should be diagn and can be, by a good dr. I would seek a second opinion and if you can't get one on NHS, might be worth going privately? I did, because where I live the waiting times for an appt were over a year at that time. It was about £200, but I'm sure prices differ depending on where you live. It was the best money I spent, as at least I knew what I had, they were helpful and referred me to pain clinic etc, on NHS and meds on NHS.

Good luck and best wishes.

[Leanne89]

Thank you for information and good wishes - same back to yourself

[Hidden]

hello Leanne

that is appalling,my fibro was diagnosed on "trigger points" and at the time "crawling skin".I would go back to GP mind you i saw my gp after seeing rheumatologist who refused to accept weight gain wasnt due to diet or lack of exercise and was no support whatsoever.

good luck i hope you get it confirmed soon

[Leanne89]

Thank you x

[TheAuthor]

Hi Leanne89

I am so genuinely sorry to read this and I agree with your other respondents, as asking for a referral to a different Rheumatologist may prove more beneficial? I would also explain everything to your GP and ask them if they can diagnose you with Fibro, and why?

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Leanne89 in reply to TheAuthor]

Thank you for your kind comments Ken - I am looking into going to a private Rheumatologist who specialises in Fibromyalgia as I don't think there is too much knowledge about it yet - I think your app is amazing and wish everyone a reasonably good day as I know how difficult it can be to get a pain free one -

All the very best

💙💚💜

[TheAuthor in reply to Leanne89]

Good luck my friend

[Midori]

There are still many 'dinosaur Doctors' who say Fibro doesn't exist, and a lot of them are young ones! I'm beginning to think that we will have to change the NHS to NHD; National Health Disservice!