If you have Fibromyalgia were you taken seriously or did it take a long time to get a diagnosis?

[CornishPastyLover]

For as long as I can remember I have struggled with my health - not the acute illnesses such as coughs, colds, throat infections, uti's, flu etc but long, drawn out chronic issues which leave me always feeling below par and which I am sure are all connected yet it feels like a constant battle to get heard and so I still just limp on by day after day and just assume that everyone has their own health issues and I need to just get on with things.

But I can not get it out of my head that I may possibly have something like fibromyalgia but fear that I may not be taken seriously if I mention it to a health professional.

If you have been diagnosed what are your symptoms and do any of mine tick the boxes?.....

Discomfort and pain all over - today I have woken up and feel as though I have slept on a cobbled street. My flank hurts, my jaws and head hurt, my hips and lower back hurt, everything feels a bit 'hurty' and this is quite common for me. Mattress is good and DH sleeps and wakes up fine without pain or discomfort.

TMJ disorder - I have had this for years and years. My jaws are always tight and sore and it seems to affect my eyes too. I often have a strange dry pain at the back of my eyes and a blocked feeling in my right nostril.

IBS and digestive issues - suffered from daily gut issues for almost 30 years - nausea, burping, gurgling, diarrhoea and /or constipation (sometimes at the same time ffs), bloating etc. Eating is not a pleasure for me. Cameras have been up and down, biopsies taken, endless blood tests, pill cameras, BAM scans and a simple diagnosis of IBS and functional dyspepsia given each time. I follow ALL the rules for IBS management yet still struggle daily.

Sore skin - can not describe this fully but for as long as I can remember I will suffer these random weird sore sensations on my skin, it is as though I have scrubbed the area with sandpaper yet nothing to see, feels really sore to the touch though.

I can not seem to regulate extremes of temperature. I struggled so much with this summer's heatwaves, the heat made me feel so unwell. Today it is 14 and I am wearing my coat indoors with wrist warmers and a hot water bottle. My hot water bottle is my constant companion in the Autumn, Winter and Springtime.

Weird headachy sensations - not like a full on headache but 'headachy' - I do suffer from aura migraines though but these are hormonally driven.

Tired, exhausted, absolutely wiped out - can vary from one to the other and no connection or understanding as to why some days are more exhausting than others. I often feel very weak, shaky and tired though.

Raynauds in the winter and throughout the year my fingers will 'lock' if I am holding on to something heavy like a bag of shopping. Fingers kind of cramp up. I also get toe cramps a lot.

I experience Petchiae a lot, always have. Mostly seen on my legs or stomach area, I notice it more if I have scratched myself or have been carrying a heavy bag and will notice it on my shoulders. Have no idea if this is connected to Fibromyalgia or not?

Have a long, long history of anxiety and depression. My GP has always contributed my physical issues to my mental ones.

Oh, I also have endometriosis. I don't think this is connected to many of my issues apart from the pelvic pain and possibly my gut issues but thought I would add that in as it's obviously a big part of my health issues.

I have had endless bloods tests over the years and all comes back as ok, as did my last set a few months ago. I was very iron deficient for many years with ferritin levels of 5 for 10 years but since having an iron infusion 3 years ago the levels are now at normal and all other bloods come back as normal and within NHS levels.

Is it worth going to my GP about this? No one ever really adds up the dots and connects any of these issues together - could they all be connected? Or should I just admit defeat, accept that I will always feel a little bit shit all my life and shut up?

Don't be sorry, I'm really grateful for any information which could help me. Thank you.

Just to say that I contacted Dr Klein. He suspects that I could indeed have a B12 deficiency.

I'll be mad if this is the case and my GP surgery have allowed me to limp along feeling like utter shite for so long (just as they did with my ferritin levels which fell to 3 for 10 bloody years!).

As I thought.....hope you get some answers lovely, you are on the right track by contacting Dr Klein x

This is different but for YEARS I’ve always felt below par, a bit off everyday, always knackered. I was diagnosed in the summer with Graves’ disease after suffering with thyroid storm, which is life threatening. I couldn’t even list the issues I’ve had all these years and like you, just thiught everyone must feel like this and I must get on with it.

Unfortunately (for women) you have to be in life threatening condition to be taken seriously imo. I had sepsis last year after giving birth - I was told repeatedly it was because my milk came in etc etc. then it got so bad my abdomen turned necrotic and I needed multiple emergency surgeries. This is just two examples but my point is, if you think something is off, keep pushing until someone listens and get rid of your terrible GP

Thank you.

I've just sent him a copy of my recent blood tests and symptoms. Actually looking forward to his reply, feel hopeful that I may be on the road to potentially feeling better - fingers crossed.

Isn't it dreadful.

My sister was fobbed off for years too and found out this year she had parathyroid disease a d needed emergency surgery.

I can't believe I was only diagnosed with endometriosis at the age of 50 despite being under the care of the same gynaecologist for 11 years.

Women's healthcare is beyond inadequate.

Fingers crossed he'll be able to persuade your GP to take action, you should at least be offered loading doses of B12 but you might still have to fight for them. My Pernicious Anaemia was missed by my GP for over a decade, I ended up really ill and with lasting effects from being misdiagnosed (with Fibromyalgia no less!) for that long. It's awful how much it's dismissed

Why is something so easily rectified dismissed by the NHS and most GPs so often? It makes zero sense to me.

Yep 100%, I’m really fed up with it. But I don’t know what we can do to change things. Formal complaints just aren’t enough to make changes. I hope you find the answers you need and feel validated!