What made you think you had it?

Hello all, im new here to the group.

I am wondering what where the things that made you think you had fibro, where there lots of different symptoms at once or did you get more symptoms, one after the other?

Thank you.

[Carlt]

My GP did.

I'd never heard of it and we'd described it as "Medically Unexplained Pain" before she did some research.

She saw me once every 28 days for over a year to try and get to the bottom of my pains.

Those were the days... When a GP actually took interest in a patient.

It's now over 6 years since my last face to face appointment.

[Hidden in reply to Carlt]

Yes, doctors don't seem to have the time anymore and it has a big impact I think. 6 years is crazy.

Im similar to you... Unexplained pain amongst other things.. I hope my doc can get to the bottom of it all.

Thank you for your reply.

[Cat00]

I had seemingly random muscle pains that moved around from day to day, I had already been diagnosed with Chronic Migraines, Insomnia and IBS. I found something about fibromyalgia on the Internet (this was offer 20 years ago) printed it out and took it to the GP. They agreed that I most likely had fibro.

[Hidden in reply to Cat00]

I got pains, ibs and insomnia along with other things, think it's time I mentioned fibro to my gp...

Thank you for replying.

[Cat00 in reply to Hidden]

Fibromyalgia is surprisingly common too so it's not like you are going to the doctor with a very rare condition you're very unlikely to have...

[Hidden in reply to Cat00]

That's true indeed...lots of people have it.

[Cat00 in reply to Hidden]

I think it's bc it's not really a defined disease as such, more a collection of unexplained symptoms. It's amorphous and wide ranging, it's can be life destroying or just really irritating depending on the individual. Sadly this can mean that getting a diagnosis doesn't really provide closure as it doesn't explain how you feel and doesn't get you closer to a cure. However it can provide a degree of validation and allow you to access supportive communities like this one and meet people going through similar things. Which is something at least!

[Hidden in reply to Cat00]

I understand what you are saying,

It's an umbrella for a whole lot of things, it is frustrating not knowing but I hope I'll find out soon..

This place so far has been great thanks to you all.

[misspicky82]

Hi Naturistdude 👋🏼

I kept going to my GP for approx 5 years saying I had pain and sleep issues and he did all the blood tests etc and bcoz they all come back normal I wasn't called in for a follow-up. In the last 3 years I started with brain fog, my pain had increased over that time, I had extreme daytime fatigue and my memory was awful. He signed me off sick from work with 'diabetes complications'. He kept saying it'll be down to you having T1 Diabetes for so long, that it was taking its toll on me. I didn't agree as my control was pretty good so at my annual consultation with my diabetes team in Dec 22, they wrote to my GP and asked them to screen me for sleep apnea due to the fatigue but he didn't agree that I had that and did not screen me. I was just left with having no answers and not really knowing what was wrong. I was just given pain killers. I also have a condition that's called diabetic gastroparesis, which causes me to be unable to digest food as quickly as the body would normally and I was given laxatives to take every day. So onto the next annual diabetes review in Dec 23, I saw a stand in consultant who was a a GP who specialises in Diabetes. Now she straight away mentioned Fibromyalgia after I told her all my symptoms and burst out crying bcoz by this stage I was so fed up of not being signed off work but not even knowing why! And of course the time if the year being Christmas and I was really struggling financially. She wrote to my GP and asked him to screen me for Fibromyalgia. She also told me to apply for PIP but I said that I'd considered it and even got the claim form but in the end I thought there was no point in applying then as I didn't have a specific diagnosis that explained my symptoms. At this point I had heard of Fibromyalgia but I mistakenly thought it was something that was to do with painful periods. I had misunderstood this from a conversation I was involved in a few years ago. I then looked into it and finally, I felt validated that these symptoms I had were actually due to a condition as every symptom that was listed, I had! Apart from IBS, however I questioned whether my diabetic gastroparesis could be part of this.

Anyway, fast forward to January 24 I saw my GP and asked if he'd got the letter and what were his thoughts. He was still adamant to blame my diabetes on my symptoms but I told him, look I looked into Fibromyalgia and I 100% feel that it explains all my symptoms. He was very resistant to agree but he did lots of blood tests and did prescribe me some Duloxetine. I was already taking Amitriptyline due to neuropathy. So, there still was no validation from my GP that I had Fibromyalgia or that he was screening me for it. I had a follow-up with him the next month and he upped the Duloxetine to 60mg. I asked him, was he thinking it was Fibromyalgia? He said, let's just see how the medicine goes!!! By this time I was even more fed up so I booked an appointment with a different GP within the same practice who my brother had recommended. Now at this appointment I knew he'd read through my medical records as he told me I'd been complaining of pain in my back and my hands for 15 years! I didn't even know it had been that long. He did a physical examination on me and as all the blood tests had been done he diagnosed me there and then with fibromyalgia, telling me all 18 of the Fibro trigger points were there for him to enable the diagnosis. He also diagnosed me with Diabetic cheiroarthropathy in my hands and he sent me for an xray which lead to a further diagnosis of lumbar spondylitis in my lower back.

Finally!!! I felt validated that I could put all these symptoms down to a condition, that I wasn't going crazy! After all the tests of not knowing what the hell was wrong with me, it felt good to know why!

Sorry for the very long post but I wanted you to know that sometimes it can be a long time to get a diagnosis of Fibromyalgia and there are still some GPs who don't really understand it and may hesitate to diagnose it so if you ever run into this complication with your GP, go and see a different one or look for a GP who specialises in it.

I would book an appointment and tell your GP you believe you have it, tell him what symptoms you have, if you've not already and see how you get on. Good luck 🤞🏼

[Hidden in reply to misspicky82]

Herllo misspicky82

Thankyou for the long and detailed reply I have learned a lot from it and am very grateful.

I have most of the symptoms for fibro, I've had various tests done without any answers, thanks to you I am now going to ask about fibro.

It is like you say awful not knowing what is causing it all, that's all I want to know, I think I will feel better for it... I've been I pain etc for years.

Thank you very much for your help.

[MiaMiaowMiaow]

Hi Naturistdude, I'd never heard of fibromyalgia until I was diagnosed with it by a rheumatologist. I thought I had arthritis as the pain and stiffness which I've had for years was getting so ridiculous I could hardly move in the mornings. I've since realised that a lot of my other health issues (which I've also had for years) are symptoms of fibromyalgia too, and it all now finally makes sense. It does not however, in any way make it any easier to live with. Hope you don't have it too!

[Hidden in reply to MiaMiaowMiaow]

Hello MiaMiaowMiaow

Thanks for your reply,

I have lots of health problems and recently I've been thinking it could be related to fibro.

I think it's time that I found out.

Thank you very much and take care of yourself.

[saxcat]

Lots of different symptoms/different diagnoses/conditions/ pains over many years/ all my life which all got worse and closer together, lots of tests, then was around 10 ish years ago was diagnosed with Fibro after attending Rhumatology . Was originally diagnosed with rhumatoid arthritis years before Fibro but that then became I did not have arthritis.

[Hidden in reply to saxcat]

I suppose it's easy for it to be diagnosed wrongly with it being full of different ailments.

[pinot]

Hi I was fed up being in constant pain and didn't know why I perceived for almost 2 years until I began to worry I had never heard of fibromyalgia.My gp took bloods to rule things out sent me to see a rheumatology consultant he examined me made me do different movements and said nothing till he gently put his finger on one of the hot-spot and I nearly hit the roof with excruciating pain.. he then tested other places. Consultant said I've good news and bad news for you you have fibromyalgia but you won't die from it but the pain and other things will be difficult to live with as there is no cure! Referred me to the pain clinic who then prescribed various med to try.

[Hidden in reply to pinot]

Interesting.

The pain clinic only gives medicines out?

[pinot]

No the pain clinic teaches you how to cope with pain how to pace yourself learn about the nature of the condition.

[Hidden in reply to pinot]

That's good....

Thank you.