waiting for diagnosis: I’m losing the... - Fibromyalgia Acti...

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waiting for diagnosis

Cry-babybuntin28 profile image

I’m losing the will I really am. 4 years I’ve been waiting for someone to listen to me.

Bloods taken, no markers………

Latest GP, it’s your age, you are going through the menopause, have you thought about HRT? I kindly pointed out that it wasn’t the menopause 4 years ago when the consultant diagnosed me with osteoarthritis ‘because it runs in my family’ and I have absolute zero, nil, nada symptoms of the big M……

I have just come out of my biggest flare up to date; brain fog, pain everywhere, just to be touched was agony, fatigue… etc etc. It lasted 2 months.

The GP then tried to go down the polymyalgia route, not that either, she then said she would refer me. Great I thought, finally I may get some answers……….she’s referred me to chronic pain management!!!! The booklet they have sent me is useless and doesn’t tell me anything I haven’t already researched.

I’ve phoned my GP surgery today and played merry hell with them. I’m sick of it now, I just want to know what is wrong with me

Is it really this difficult?

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Cry-babybuntin28
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22 Replies
Evonne02 profile image
Evonne02

Sounds the same as what i went through with the same time frame too. You need an emergency referral to Rheumatology. Mine took 6 months and i was told its fibromyalgia which was blatantly obvious from years ago. I have fruebds at the same gp practice who called in desperation and talked about their mental health being affected. They were called in that day and diagnosed by the gp with fibromyalgia. Maybe thats the route you could take for your gp surgery to take you seriously. Hope it helps, all the best 😍

Alltheflowers profile image
Alltheflowers

Hi, It took me years and years to be diagnosed. I had all the tests done, a few times over, and then for years it was put down to anxiety.

But diagnosis is changing all the time and is no longer a diagnosis of exclusion, so can be diagnosed a lot sooner.

In my opinion a quick diagnosis is good, as waiting years can greatly aggrivate symptoms and your mental health. However, I also think testing for other things should still be done just in case there's something else going on that could be more serious.

It all depends on your doctor, length of time of ongoing symptoms, widespread pain index etc etc.

Have you suggested to your GP that you think it may be fibro? This may trigger a referral to a rhuematologist ...

Cry-babybuntin28 profile image
Cry-babybuntin28 in reply to Alltheflowers

hi alltheflowers… yes I’ve said it may be fibromyalgia but because I’m not ‘textbook’ and I’m in my late 40’s they are not listening now.

I’ve seen a rheumatologist previously who diagnosed me with osteoarthritis ‘because it runs in the family’

This has been going on for 4 years now

Alltheflowers profile image
Alltheflowers in reply to Cry-babybuntin28

Hi, if you don't get anywhere then maybe consider changing your GP? I know that's not easy anymore as docs are like gold dust now! But maybe it's something to consider? I feel your pain as I went through the same for years and years! I know it's tough, but try and keep positive - you will get there eventually. Here if you need to chat 💜

KimiJay profile image
KimiJay

Ditto Evonne's reply about a Rheumatology Clinic. Have you seen the body pain points charts on the web? They can at least give you a clue about whether you have it or not. Get someone to help you press on them so their fingers whiten at the sides. We used it for my son the other day and it gave him the confidence to go to his doctor who has ordered some tests for him (and was also quite annoyed that the previous doctor he saw in the practice had been dismissive). Keep pressing your case while you can summon the energy. Good luck.

Cry-babybuntin28 profile image
Cry-babybuntin28 in reply to KimiJay

hi Kimijay

Yea I’ve done this and it all triggers pain…… like hot searing pain which lingers….

KimiJay profile image
KimiJay in reply to Cry-babybuntin28

Hot searing pain that wont leave you alone sounds horrible. I couldn't live with that. It makes the day and night too long! Is there a Rheumatology Clinic with a good reputation near to you where you could turn up and at least ask how you get your GP to refer you? I read somewhere as a result of something on this site I think, that it is possible to get an MRI scan which actually 'shows' your reaction to touch pressures on the trigger points although it involves a nasty dye. - If you are in London, I think it is a University there. It can't just be a private MRI scan but someone who is researching it and therefore knows about it. This is very new Knowledge. Des would be the go to expert on this I imagine. Not my place to comment on something that appears on this forum's information space.

Yassytina profile image
YassytinaFMA UK Volunteer

Very very frustrating for sure 😂😂agree push for a rheumatologist @some times it’s hard but having alittle kick off just too be heard can move on something , fingers crossed you get somewhere soon xx

Cry-babybuntin28 profile image
Cry-babybuntin28 in reply to Yassytina

Hi Yassytina

My most recent GP just kept harping on about the menopause and how I’m at that ‘stage in life’

I gave her what for and asked to be referred, she said she would refer me….. me expecting another rheumatology referral, but nope it’s to the pain management centre who sent me a booklet which is full of stuff I already know after researching!!!

Yassytina profile image
YassytinaFMA UK Volunteer in reply to Cry-babybuntin28

it does make you want too scream, I was ready too change surgeries when my practioner nurse put me on too different doctor that changed things but years before I felt the previous doc really didn’t do anything apart from antidepressants, keep at it until doc get s the message , is there any other surgeries near too where you live ? Xx

Cotswolds25121 profile image
Cotswolds25121 in reply to Cry-babybuntin28

so frustrating 😱😮‍💨

Ellie1991 profile image
Ellie1991

Up to 3 years ago I was an Ironman 70.3 triathlete and leg pressing 225kg. One day I had a tight chest aking back and pain in my side. I went through wereything including people saying i was a nurotic and a hypocondriact. Took me 2 and a half years to get them to remove a infected galbladder that had put me in hospital more time than i wish to mention. now my gallbladder has gone that pain has gone but they have now left me with fibromyalgia saying it is due to child hood trauma, repeted injuries, and surgerys. I have been told i will never race agian and that was my happy place to go into the wild and run till the day passed by and same on my bike. This is i will abmit hard to acknowlage but I have been to the lowest of the low about 20 years ago and came through so I know when teh chips are down it can be hard to see the silver lineing but the key is to endure and be strong. (Easier said then done i will admit). The pain clinic are rely good for me they sent those emails to me first but that is only the start. Find a good GP and put pressure on them.

Midori profile image
Midori

I'm afraid it can be this difficult. It took 20 years for me to get my diagnosis. It also took a rheumatologist for the Fibro diagnosis, although later they sent me for an MRI for Possible MS! Fortunately it wasn't, as the MRI showed no lesions.

I also was very sporty; rockclimbing, fencing, Aikido, Horse riding, hillwalking and orienteering. Ballroom dancing. (not all at once, I hasten to add!)

Cheers, midori

dianebrown707 profile image
dianebrown707

it took me 3years for someone to listen to me, one of my doctor's told me to go home as everyone gets pain at my age, I was 53 at the time. I just kept going back then I finally got an appointment with a rheumatologist and got my diagnosis, fibromyalgia and osteoarthritis

Dinkie profile image
Dinkie

I'm afraid it isn't an easy route to diagnosis - mine took from 1987 to 2014. I suggest you write a letter to your GP asking for a referral to a rheumatologist. Letters form part of your notes so can't be lost or fail to be recorded on your notes like a phone call or in person consult. Follow the letter up with a telephone consult. I had to go down this route for a referral to the fibro clinic once diagnosed. Keep a diary as once you manage to get a referral it's useful to have all your notes available together with a list of questions as you can bet as soon as you walk through the consultant's door the fog descends and you won't remember anything you want to ask😂 I learned the hard way🤦‍♀️ Good luck

Fibro_fairy profile image
Fibro_fairy

I’m sorry to hear this but totally understand your frustration, it took me 15 years until I was diagnosed & I’d given up but it was a new doctor who started at the doctors I go to who flagged it up after reading through all my notes etc

Keep persevering , book to see different doctors and / or if you can move doctors

All the best & take care here if you ever want or need to chat 🧚🏽🙏🏽💚

Bonny1234 profile image
Bonny1234

I went through the same with my GP lovely man but was hell bent on not refering me to neurology. I ended up having to go private, i had some savings and used it, within 2 weeks i had a consultation, MRI scan on head and spine and nerve test , turns out hand pain with pins and needles isnt fibro as doc kept saying i have cappal tunnel on both hands need op booked for 12th of october , also mri showed lesions in brain and spine , just waiting on second consutation with neurology. Doctors are not always right we know our own bodys.

Fibrofog profile image
Fibrofog

Ask to be referred to a rheumatologist, I only saw them once, but they diagnosed me straight away, and all he did was feel my joints! I seem to have been lucky as people like you seem to have trouble.

Hope this helps, and hang in there.

MrsSwing profile image
MrsSwing

My GP was awful & at one point I walked out mid appointment. It took years for me to be diagnosed & they blamed everything on my mental health & being anaemic. I told them that they were causing my mental health to deteriorate to the point of being suicidal. A new GP joined & she seemed to be up to date & the Rheumatology team that I finally saw were brilliant. Good luck & I hope that you’re able to get the help & support you deserve soon.

Midori profile image
Midori

Younger GPs are much more clued up on Fibro.

fmlife profile image
fmlife

Hi

fmauk.org did information packs to doctors not sure if still do.

fmauk.org/information-packs...

will also need a referral to a fibro friendly rheumatology.

possibly may get a mri as well. there is advice on nhs in closterphobia page for the mri.

sorry to say get a blood pressure test done, (for me they hurt)

it takes a while from first suffering to know the pain has a name.

gentle hugs.

RWilliamson profile image
RWilliamson

If you still struggle to get a referral maybe consider changing GP? I have relocated and going to a new GP with younger doctors has really helped me get diagnosis and treatment. Don't give up, stay true to how you feel x

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