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?

Do you have hypermobility and could you have Ehlers Danlos Syndrome? It is a connective tissues disorder which ticks basically all of those boxes. Hormonally I find my some of my symptoms get much worse after ovulation but its taken years to figure this out. But many are consistently terrible. Its causes a lot of dysautonomia, which affect your gut, pain, dizziness, heart rate, temperature and many other things. I've found doctors are far too eager to say fibromyalgia without looking further into things.

DraftLovely I have considered hypermobility or EDS but when I mentioned it to my GP she basically rolled her eyes and said that everyone is a little bit bendy (I can bend my thumbs to my wrists and have always been much more flexible than anyone I know). She made me feel a little bit silly tbh and I went out with my tail between my legs and haven't dared asked anyone else in case they make me feel as stupid as she did. I know I could pay to see a rheumalologist but I am loathe to spend £250+ to be told the same thing especially as I don't have that kind of money to waste. Maybe I should try another GP?

I would be asking for a full autoimmune panel to be done, including ANA/ANCA.

Fibromyalgia is a diagnosis of exclusion and is over diagnosed imo.

Thanks, I will ask for that to be done.

Has your CRP/ESR come back as normal too? I would make sure you get the actual figures for all your blood tests, as often ‘normal’ in the NHS isn’t optimum.

Do you feel a lot worse if you exert yourself, and is your recovery period more like a day rather than a couple of hours?

I didn't get taken seriously for nearly ten years and it took another five years of tests (when waiting lists were "normal"). I went through nerve conduction tests(?), xrays, multiple blood tests then the biggy of a full MRI scan to discount MS. All that was left was Fibromyalgia and I was referred to Rheumatology for confirmation (which some areas don't do anymore, GPs can confirm).

Some people can take the meds which help with the pain, others can't. Some have to totally rearrange their life and do pacing instead (which sucks btw).

If I was in your shoes I would go to a different GP for a second opinion, esp regarding your bendiness.

Definitely try another GP. Everyone might be a bit bendy but not everyone's body is having to work extra hard to deal with it or causing their whole systems to go crazy. I've had doctors ignore the connection between hypermobility and internal symptoms and look at me like I have two heads. If the collagen is affected in your body it affects all sorts. Please have a Google. Go in with lists and proof to a new GP. And keep trying GPs until you get a good one. Its well known to take decades for diagnosis.

This - what's your actual ferritin level? Thyroid panel, vit b/d, folate etc.

I was diagnosed with fibromyalgia after spending years in & out of hospital with dislocations of my joints, problems with my swallow, problems with random allegeries. Etc.

years later a nurse randomly went through all my medical notes when she was waiting for me to replace my implant and suggested EDS. She encouraged me to get a diagnosis as she said i was extremely hypermobile, had to have DNA testing for it and low & behold it was EDS not fibromyalgia. So dont accept fibromyalgia if you feel its something else its not a real diagnosis its just what they say when they cant figure out whats wrong.

Last bloods were in August. ESR was 2 the range says 1-19 so all normal.

I would still be requesting a full autoimmune panel and going private for Rheumatology if needs be.

I'm another who instantly thought EDS while reading through your OP. It's not just hypermobility, it's a connective tissue/collagen disorder that affects your whole body, and what you're describing fits the whole EDS picture to a T. GPs can be very ignorant about it

Have a look at the Beighton Score (I'll attach an image but it mightn't show straight away) and see how many points you score, it'll give you an idea of how hypermobile you are, although it misses out many joints like hips and shoulders

The only exercise I can tolerate is walking my dog. I've tried lifting weights so many times mes as it's obviously supposed to be good for perimenopause and menopause but it kills me, even light weights will leave me hurting all over for a good week or so after. All of my friends lift heavy weights and never have this issue.

I certainly have to pace. I'm currently laying in bed as today is not a great day and luckily I had nothing planned but I'm exhausted and haven't really done anything strenuous.

Ferritin is now 61 (range 39-200)
Folate is 3.3 no range given
B12 is 326 (range 197-771)
Vit D is 61 no range given

Thyroid
Serum TSH 1.47 (range 0.27-420)
Serum T4 13.6 (range 12-22)

I've been told on a b12 support group that my folate is low but my GP says there is no range given so she can't advise me. I really don't like the idea of purchasing b12 online and self injecting, knowing my luck it would make me unwell.

I score around 7 on the Beighton scale but my GP still wouldn't take me seriously. I think because I've been back and forth with my constant gut issues, the anxiety, depression and exhaustion they all have me down as neurotic. My gastroenterologist now has Health Anxiety typed at the top of all my follow up letters. I have never been diagnosed with health anxiety so not sure why she decided to jump to that conclusion on her own.

This really reminds me of a similar post the other day, where a poster described seeing a similar diagnosis on her notes which was never discussed with her. It’s not okay at all. You should be taken seriously, your GP sounds a bit crap if she cannot even interpret blood test results. As an aside, I do find using ChatGPT helpful for this. I would change GP if your situation.

Your folate could be low - my range goes from 3.1 to 19.9 mine was 3.2 and I supplement. Ferritin is still lowish -it needs to be at least 70, 100 is better but a gp will say it's normal at 20 (!). b12 is probably better at least 400. Can you ask for an active b12 blood?

Your Vit D and folate are both very low.

I have a lot of what you state OP. Initially 15 years ago I was told suspected lupus. I was told instead about 12 years later I have fibromyalgia. I ache a lot for no reason. When i mentioned the diagnosis and aching to a mate she said I'd mentioned aching for as long as can rrmrmber- made me realise I've probably had this dince my terns. My cousin has it too. For me the issue is the unpredictability of it. Hope u get some help OP.

@CornishPastyLover With that score and your symptoms, then you fit the criteria for Hypermobility Spectrum Disorder at least, and possibly EDS. I'd really recommend the private Rheumatologist appointment if you can afford it, but just make sure it is one who is knowledgable about EDS if you do. Ignore the GP, a diagnosis is important as like I mentioned, the condition affects the whole body and can cause issues with operations, dental work, giving birth etc

I remember reading something once thst said'try to resist the temptation to do one more thing'

This is a link to the current EDS Criteria for more info

https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

Thanks for the advice everyone.
I'll make an appointment with a different GP next week, will mention my eds concerns and hope they take me seriously this time.

Did you feel better after supplementing with folate?

Good luck! Tell them they need to take you seriously. Ehlers danlos syndrome isnt a a joke, and they need to start taking it seriously.