I believe this is more than fibromyalgia.

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I recieved a diagnosis of fibromyalgia ten years ago but in the past 18 months my symptoms have gotten dramatically worse. Sorry if this is a long post but I will try and give a full picture. It was 2 days after the birth of my last child when i started with an upset tummy. TMI sorry. This lasted 3 weeks and since then i’ve mostly had an upset tummy. So much so now that i have to use tenas if i’m going out and let me tell you, It’s bloody humiliating. I was given a diagnosis of IBS and told that it was a symptom of fibro. In the past 18 months we’ve been through 3 mattresses and i slept downstairs on our sofa bed for months because i have excruciating back pain. I can’t sleep on my back, lying on my sides for any long period of time causes my hips to hurt loads as well as my back. I’ve been refered to the pain clinic but yet again was just told it’s fibro and my body is dramatically over sensative. My fibro pain is so bad that i can no longer live a “normal” life. I’ve just posted elsewhere about the cleaning, which i’m unable to do, i try and keep busy but i often need to go and lie down during the day and i need to rest for hours. I’m sick of the doctors chalking this up to fibromyalgia, i have had an MRI a year ago on my back which came back normal. But this pain, it is not normal. My DH recorded a video of the level of pain i’m in at night and i showed it to my physio. He said he had no idea it was so bad and then said my body was over sensative. I just don’t know what to do. I want more tests, i am still young, i can not go through the rest of my life in so much pain. It really really gets me down. I’ve taken a number of overdoses in the past year. They are giving me mental health support, but they can’t take the pain away and the fatigue. And that’s what’s causing my depression. Sorry this is so long and i hope i’ve not missed anything out but if i have then just ask thanks in advance.

Oh bless you. 29 is when I had to stop working so I know just how you’re feeling.

I would also do some research into functional medicine doctors (make sure they’re actually a doctor, not a homeopath as some are). They take a much more holistic view than most GPs and work on the basis of symptoms as well as tests since tests are not foolproof in many cases. You’d have to see them privately but it’s nowhefe near as expensive as seeing a private consultant.

If you had a major vit D deficiency then you should have been on a very high dose for 12 weeks and then a maintenance dose for life. Have a look at the NICE guidelines - mine is very low too and it is making me feel horrendous.

Make sure you get Vit B12, vit D, folate, ferritin levels checked at a minimum. A full blood count too. Have a look at hypothyroidism symptoms since that can affect every function of your body pretty much - if you have a lot, get a through thyroid panel (TSH, FT4, FT3 and thyroid antibodies).

I often feel like a bloody detective trying to figure out what’s going on. My TSH level is up and down but never high enough for diagnosis (in the U.K. at least - elsewhere I would)

I could have written your original post. Fibromyalgia is awful, and the pain is like nothing else I have experienced. To the point where I declined pain relief when I had a stuck kidney stone, because the pain was no where near how bad fibromyalgia feels. I have also been diagnosed as coeliac and a gluten free diet has helped a bit with the pain. It might be worth a try?

Repeating some of what PP have said, but I'd be reading up on: autonomic dysfunction, vitamin B12/folate deficiencies, chiari malformation, ehlers danlos syndromes (particularly hypermobile type, formerly type iii), trying an exclusion diet (such as low FODMAP, dairy free, gluten free, sugar free, caffeine/alcohol free etc), trying a diet such as AIP etc.

I was misdiagnosed with fibro for years which masked a shit show of other conditions and these are a few things I've come across along the way which rang bells when reading your posts.

In the meantime have you ever been referred to a pain clinic/pain management programme?