Fibromyalgia - how do you go about getting a diagnosis?

[Ginandsonic]

I have an appointment booked with my GP, after 3 years of constant pain which I felt like I couldn't see the GP about (I felt stupid going "everything hurts all over"). Someone mentioned fibro to me and having looked over the information online about it, it sounds exactly like me. I wondered if anyone has any experience of how they got diagnosed, and what, if any, treatment helped them? Thanks in advance

Hi, I do not have fibromyalgia myself, however my mum went through the very long process of getting diagnosed (wrongly) with fibro after she contracted glandular fever. She was in constant pain, ridiculously fatigued and left barely able to walk, she was treated for fibro for a couple of months until they became concerned about a constant inflammation marker in her bloods which lead them to diagnose her with a form or hereditary arthritis which she is still trying to find a form of treatment that works for her. All that aside she struggled to get her diagosis for fibro, the doctors seemed almost reluctant to diagnose it as that ? Before the inflammation marker became an issue, however once that was the case she was referred to a specialist unit within her GP centre, they first trialled her on pain relief and got her a walking stick that helped to ease some of the difficulty whilst walking, and started to look into treatments. The difficultly that we found was actually being taken seriously, a doctor repeatedly told my mum it couldn't be that bad, my mum is a tough cookie and she was really struggling. It made me incredibly cross as she was dismissed so easily so many times, and my mum is quite young, only 44, I think that this didn't help. What is your pain like ? My mum describes it as a burning cramp pain, her arthritis, which has actually become a disability is very similar in characteristics and pain. I would say the best thing you can do is go with a clear list of what the pain is like, how it is on a scale of one to ten, when it is worst, what helps to ease it if anything, how long it's been going on and the main sources of pain for example ankles, fingers, joints etc, If it affects your sleep, what things you can't do because of it, that's what my mum did in the end as she was so sick of being made to feel like she was making a mountain out of a mole hill. And most importantly don't give up. Also don't google anything about fibro, it's all very negative and drove my mum to tears in the beginning. Chronic pain is exhausting and very difficult to go through, I've never felt so helpless watching my mum go through it. I wish you the absolute best and although my post might not of given you the answers you're looking for I hope it helps a tiny bit. X

See, I'm worried I'll be dismissed as I get on with things because I'm a single parent and I have to. The kids don't see their dad and he doesn't pay maintenance so I parent 24/7 and work part time because if I didn't we'd be homeless. I'm hobbling round holding onto furniture for support by the end of the day, falling asleep on the sofa before my kids bedtime, then only getting about 4hrs of deep sleep per night.
I had deep aching pain in my neck, shoulders and upper back, stabbing pain in my ribs, stiffness and pain in my lower back and pelvis, and the pain in my feet feels like I have no padding on my soles at all. All my joints are stiff, my jaw feels like it pops out of place, my scalp hurts, and my upper arms feel like I have sunburn constantly. Plus restless legs, sensitivity to noise, inability to think

I have fibromyalgia. I spent 6 years suffering from pain. Went through the process of finding out if I had rheumatoid arthritis. When that was negative was told I had fibromyalgia.

Definitely follow up with your GP ASAP and ask for a referral to rheumatology, who are best placed to exclude other conditions and make a fibro diagnosis. My DP was recently diagnosed and the first line drugs are having a good effect. Your lack of sleep will worsen things so see if you can do anything to help that at home. Can you build a support network with any other local parents to give you some rest?

Pain like you describe that has been present for over 3 months will be taken seriously by your GP. You will most likely have a lot of blood tests to check for vitamin deficiency, autoimmune markers and other things. If these all come back as normal then you'll need a referral for further investigations. Fibro is generally indicated for pain & fatigue issues when other things have been ruled out.

@Ginandsonic

My MIL has fibro and took her a while to be diagnosed, she said she felt like GPS were reluctant to say that’s what it was and felt almost like they felt that was a last resort diagnosis, that could have just been her GP though.

Do you have a family member or friend who knows how much you struggle and the pain you are in? Maybe take them with you to the appointment as they can chime in if they feel you are glossing over things in the habit of ‘just getting on with it’.

On the plus side once MIL was diagnosed her treatment seemed to kick in and help quickly. She has been offered a few experimental therapies as well which she has taken up and seems to be improving a lot.

The reason doctors seem 'reluctant' to diagnose it is because it is a diagnosis of exclusion. If we diagnosed fibro and then there was actually an arthritis or other progression condition in need of urgent attention we would be 'up shit creek without a paddle'. Surely this is good for patients and not bad...?

OP you could also have a muscular issue. Fibromyalgia diagnosis is about ruling out loads of other things first as there isn't a single fibromyalgia test. You could have a connective tissue disorder or you could have a torn muscle that's caused the rest of your body to shift and work incorrectly trapping nerves and causing pain.

Hit post too soon. Go to your GP but be opened minded. It could be a thoracic spine issue, it could be many things. As it's affecting your neck and shoulders, they will start there. Good luck. It's awful living in constant pain.

I have an appointment for bloods in a couple of weeks, and more importantly, she listened and didn't act like I was wasting her time

Good luck OP it’s great that your GP listened. I have Fibro and try to always see the same GP as she’s got to know me and I find that helps.
As everyone else has said they will need to exclude lots of other things before a diagnosis, and I agree that is very necessary to ensure they don’t miss anything.
The things that have helped me are ‘pacing’ you’ll be able to read lots about it if you google Fibro and pacing. It’s basically listening to your body and not pushing yourself. If there’s anyway way you could get time to have a lie down in the day, do it, even if you don’t get to sleep just being able to rest should help. It will take time to learn to manage the condition of that is what you have. I’m not as bad as I was, after being virtually housebound. I make sure I have a sleep in the day at least 4 days a week, I try to eat 3 meals a day, I take a very high strength prescribed vit d supplement, and I don’t push myself unless I absolutely have to. That was the hardest thing to learn and come to terms with, that I have to listen to my body and can’t just push through it.
I hope things improve for you!

Hey op I’m glad your dr listened.

Mine was diagnosed following my diagnosis of arthritis in my spine. My gp actually made the diagnosis, she said she could send me to rheumatology but all they’d do was look at her notes and discuss the pains I’ve suffered for years, agree with her and then nothing- because I’m already on the medication I’d be prescribed what with my disability as it is.
She, in fact, was the one to mention fibromyalgia. I just went in for a medication review and I broke down about all the awful pains, how they were so random- my skin can feel like it’s on fire, or like bugs are crawling all over me. I have heat sensitivity, in the winter I can be wearing flip flops and no coat but in the summer I’m frozen (or just normal for the season but an extreme version). Some days the shower is so excruciatingly painful that I skip it. Restless legs, scalp pain, migraine, random agonising pain in random places, unbearable tiredness.
I was venting to her because I know and trust her well enough to do so. She said to me ‘sheldon, that’s fibromyalgia for you.’ I said what?? What is fibromyalgia?? She said ‘all the things you’ve just described. It can go hand in hand with the other diagnoses you have.’

I too am a single parent. The struggle is real. But I’m telling you, you’re doing so well, and as silly as it sounds, swimming or some form of exercise can really help.

Chin up. You’re doing amazing x

Hope you're doing ok OP. I had an appointment rheumatology who have diagnosed fibromyalgia after a barrage of additional tests to check for any signs of autoimmune issues or other things. Having said that I'm not getting any actual treatment but at least I know I can follow up and try things recommended for fm if I feel I need to. Just being taken seriously is half the mental battle though I think. I appreciate having had other stuff comprehensively ruled out.

Fibromyalgia is usually diagnosed after all other causes of a chronic pain have been ruled out so it tends to take a while and requires persistence. The symptoms also mimic those of a number of other conditions so it can be tricky.

As above OP I would request a referral to rheumatology firstly, write down all of your symptoms, even the ones which sound silly, and write down how often you are troubled by them, rating pain on a scale of 1-10. I'd advise taking it with you to show the doctor as they will only ask you this anyway and it can get forgotten if not written down. You'll need to impress upon them how your quality of life is affected- can you work enjoy the activities you used to etc.

Systemic pain management is often a multidisciplinary approach really, when it succeeds. There are lots of pain relief medications but what is 'good' entirely depends on the type of pain you have, and a person who's life is changed by a tablet will just make another feel shit.

I was diagnosed 15 years ago with fibro but have since been diagnosed correctly with a genetic disorder (Ehlers Danlos) and dysautonomia (among other things). There is no cure - I see the pain management clinic re: medication, have physiotherapy and acupuncture (on the nhs). None of it 'works' as such but it improves my mobility and ergo quality of life, and takes the edge off sometimes. The rest boils down to pacing, occupational health support and mobility aids.

So sorry to read that you are in so much pain OP. Hopefully you can get some answers

Ask for referral to occupational therapy, they can help with suggesting practical adjustments to your routines and home/work environment to reduce the impact on your independence.

Thanks all, I've had blood tests, repeat blood tests, and now I'm being referred to rheumatology