How long did it take to get diagnosed

[Mummy-of-4]

How long does it take to get diagnosed with fibromyalgia my doctor seems to think I have it but all my blood tests have come back clear my previous doctor got to this point and just fobbed me off and I don’t think I could go through that again. He says the next step for me is a physio assessment I don’t know what help that’s going to do for me before I’m he will refer me to rheumatologist. I started 5/6 years ago with just stiffness and pain in my hands now I feel so rubbish I hurt all day all the time but not like child birth pain it’s a constant aching type pain my skin tingles and some days are worse than others and some months are worse than others, I struggle sleeping and have 4 kids and work full time so some days are more of a struggle than others. I’m just after other people’s experience and how long it took before you was finally taken seriously

[Fra22-57]

Great he is referring you to a rheumatologist.They have the knowledge of it .It took about a year and a half for me as my GP couldn’t control my pain.He sent me for lots of tests that were negative but just kept raising the painkillers.In the end rheumatologist asked me to lay on couch.He pressed on different areas of body and I said it was fibromyalgia.I didn’t believe him and thought it was all gobbly gooch.He was right thou and it just got worse and worse.Hope yours help you

[Mummy-of-4 in reply to Fra22-57]

Wow how can they tell just by pressing on your body. To say I work with medicines I love learning nee things and things like this I nteogue me

[Fra22-57 in reply to Mummy-of-4]

Points he pressed really hurt which shouldn't hurt if nothing wrong with you apparently .They are tender points and if you Google it you can see a chart showing these points on body

[Ladame in reply to Mummy-of-4]

Hi, my rheumatologist diagnosed me with fibromyalgia this way as well. I have rheumatoid arthritis and thought it was to do with that initially but she examined me and said no, you’ve got fibromyalgia as well! Great! It’s good you’ve been referred, hope you find some meds which help. Sending a hug x

[Dizzytwo Moderator]

Hi there, welcome to the group. Sounds like your GP is doing all the correct things. All these tests and appointments are a good sign you have a good doctor. The GP needs to make sure he/she is not missing some other important health issue.

If all your tests etc come back ok fingers crossed for you they do. Then a diagnoses of fibro would be the likely outcome.

Unfortunately these appointments can take time. Especially now with covid.

I have had it for about 40yrs and it to 10 years to be diagnosed. But that was back in the day. Things tend to be a lot faster these days.

I am hoping for youandyour family you dont have fibro.

I see you've left your post unlocked to this community only for privacy reasons you may want to lock it. Also locked posts tend to get more replies

Momo

[Mummy-of-4 in reply to Dizzytwo]

Firstly how do I lock the post? Secondly Thankyou the last few years have been hard some days I can barely get out of bed, otc pain relief doesn’t help but I can’t take stronger co-vodamol cos of where I work! I do hope he is a good doctor the last one put me off which is why it took so long for me to pluck up the courage to go to this one and say I need help!!!

[Dizzytwo Moderator in reply to Mummy-of-4]

Hi, the GP sounds like he is starting from the beginning and going through the normal procedures.

The link below will show you how to lock your post.

healthunlocked.com/fibromya...

If you need further help please just ask. I hope you enjoy the rest of your evening 😊

[Hidden]

Hi I also had problems getting diagnosed I have had this pain and extreme tiredness since 2012. Back and forward for blood test .I felt as they didn't believe me and I was waisting their time. I have just moved so I changed doctor surgery. Within ,,3 months he diagnosed fibro so I have just started treatment all this time in pain but still have pain and tiredness but it means so so much when your believed .it's a start just persevere good luck take csre

[Mummy-of-4 in reply to Hidden]

My first doctor was just so rude he just did blood tests and said nothing was wrong I was over working, but nothing has changed I still work the same job the same number of hours and the kids are more dependent than when I first when I’m just so scared that I’m going to be robbed off again and I don’t think I can take that some days I can barely get out of bed I’m so exhausted but then come bed time I can barely sleep or when I do I struggle to stay asleep!

[Hidden in reply to Mummy-of-4]

The problem they see blood results are ok and that's the end to it I was sent for the same blood test 5 times . I went to a constant and was told nothing was wrong. My big struggle is getting out of bed in the morning I'm so tired and in so much pain. Holding down a job is so difficult as I used to be so active. I just work and sleep. I have been told the tabs I'm on will cut in soon .we will see all these people with the same symptoms I'm blown away.

[Mummy-of-4 in reply to Hidden]

I’m so glad I appear to not be the only one and it gives me relief that I will be taken seriously

[Hidden in reply to Mummy-of-4]

I found you have to tell the doctors what you think you have and point them in the right direction. The younger doctors seam to recognise fibro more.but when your diagnosed it's such a relief that your believed.

[Grumpy87]

Hey, so it took 5.5 years for me to get diagnosed I went through so many services basically given a pillar and a post to bounce between, had mri scans to rule out ms ect referred to pain clinic had medications given then changed it was a long slog for me. But bare with the doctor I felt it was better to rule every thing else out first, it was draining for me and I did keep questioning was all this in my head even tho all my issues and pain was very real. Good luck xx

[Cat00]

Took over 10 years.

[troland]

I attended doctor and hospital for 5 years before I was diagnosed. As they have to rule out all other illnesses. I was lucky to have a good doctor who didn’t think it was all in my head and persisted until diagnosis was found. Rheumatologist was one who diagnosed me. I also suffer with arthritis and other conditions which didn’t help as some symptoms could be related to these conditions. I have suffered from fibromyalgia since I was 48 I’m now 73 at least doctors know bit more about the condition than they did back then During my time attending hospital I also went to pain clinic where they eventually found right medication to deal with condition. I’m sorry your doctor is not sympathetic to you but please keep going till you get some answers It’s just that some gps don’t know enough about fibro but your are entitled to request an referral to see rheumatologist so insist on getting appointment. as this is your right. Hope you get app soon and get sorted out. Good luck

[Aaaaa- in reply to troland]

Funny how we all sound exactly the same…!

[MALC19]

Hi so sorry to hear of your suffering.I have had ME/CFS for 30+ years and Fibro since 2016.

It is very hard to be diagnosed with any of these issues as no test shows you have any of these conditions. Once all tests come back ok the Doctors then move on to ME/CFS and Fibro as everything else has to be ruled out incase they miss something.

Once all this is done they will then check by pressing all pressure points on your body which then tells them your diagnosis of fibro. I had 15 of 18 painful pressure points.

The diagnosis takes quite a long time. I am not a dr but i do know my own body and we are all different. There is no easy answer and you do have to be patient unfortunately.

I have seen many doctors over the years, some are very kind and understanding but others can be quite arrogant and impatient and do just fob you off. Its not nice to come across those ones.

Please dont ever think it is all in your head because its not, there are so many of us out there that do understand you as we have all been through exactly what you are going through.

I did go to Rheumatology 3 times as i have multiple health issues now.

When you are referred to physio/pain clinic they are the ones that are trained to deal with helping you with your pain, usually MSK. I went to them many times over the years and last time i saw a specialist physio that did many different treatments, Accupuncture, hydrotherapy, reflexology etc they try everything.

It is a very long process but you will get the help you need and we do understand you more than you can imagine.

Good luck with it all and we are always around if you just want to have a moan.

Take good care of yourself.

MalC 😊😊

[Eggsy]

Hi , it's taken eight years to actually say I have fibromyalgia, I went to the hospital because of three slipped disc, and four years later on the pain never went away went back to the hospital and because they actually didn't know what was wrong with me they decided it was fybro, I never had blood tests or saw rheumatology my specialist at the hospital decided it , I also went to see a neuro specialist as I had blurred vision in my left eye and thought it was MS,but turned out to be a brain aneurysm. I have the same symptoms as you but now have numbness and tingling in my fingers and toes, hope you get sorted out soon but it takes ages x

[Max6]

Hi it is as if I wrote thisMy Dr is the same starting the second round of physiotherapy tonight as covid put a stop to it last year it just seems to take an age with try this pill try that pill, i feel for you as in same boat. Take care and good luck x

[MaggieSylvie]

If any of your blood tests came back positive for something, then they'd have to investigate that. Fibromyalgia doesn't show up in blood. There are standard pressure points that hurt when you have FM, and a certain number of those will confirm it. Surprised your GP hasn't done this already as it is a simple test that doesn't take very long.

[Mummy-of-4]

I’ve looked and several of the pressure points I’ve seen don’t hurt per say but they are always sore, is hurt the right way to describe as it’s not pain and this is what I explained to my doctor it’s not like a scratch or cut type pain but always sore, discomforting and no amount of paracetamol or ibuprofen help to ease it!

[benidorm21]

Hi it took about 2 years for me to be diagnosed by a rheumatologist , this was 22 years ago and he said it was an easy diagnosis as i had not recovered from a major trauma and a trauma can bring on Fibro , but the downside was no treatment only pain killers .Eventually i had to give up my job . Sorry to put a downer on your experience but getting a diagnosis helps but does not take the symptoms away .

[Charliebear1234]

Hi mummy-of-4 , I had to have brain and whole body scans rheumatology appointment and neurology appointment bloods, extra alerts of test have to be ruled out first bab took bout 6 month for me then the virus hit us all and it's a waiting game now