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?

Thank you, I will. I've spent so many years feeling crap and no one listening to me, I just want some solid answers now so I can live out the rest of my life at least successfully managing whatever this is.

I also think you’d be well within your rights to question this ‘health anxiety’ you’ve been diagnosed with, despite never have been assessed by a mental health practitioner? That is very poor practice.

I was diagnosed with fibromyalgia after decades of being unwell. But actually I think my symptoms come from a genetic fault. I've found out as things have got steadily worse. If you can afford to do something like 23 and me, I would.

I'm due another gastroscope soon and I'm planning on asking her if she would not write this on my letters from now on. I have no idea why she she's taken it upon herself to do so. It thoroughly pisses me off.

Thanks, I have often thought about doing a DNA/ancestry test. I'm certain my mum has/had many of the issues I now suffer from, I think there is some kind of link. Mum is sadly now in advanced Alzheimer's so I've always been a bit hesitant in case it says I'm at risk too.

Your folate is very low, your b12 is low ish, not on the floor but it needs your folate to be optimised to work in harmony.

You are likely symptomatic of b12 deficiency, I had all your symptoms when diagnosed ,(my serum b12 was 127) and ive been self injecting twice weekly since January. The improvement has been very noticeable. Join B12 Wake Up Group in FB, they will point you in the right direction.

I am a member of the group but they simply told me to start self injecting. I'm not keen to purchase online, I'd be concerned where it was coming from and what I was putting in my body. How can you be assured it's all above board?

Fibromyalgia is what's known as a "dustbin diagnosis", OP. I'm not sure why you're so keen to have this label - what will it achieve?

My source of b12 is from a German supplier, as recommended by a Consultant Dr here in the UK who runs a private Iron and b12 clinic. I consulted him after getting little to no help from my GP, and I truly believe taking matters into my own hands has saved my life.

I can't comment on EDS as I don't have this (although my Grandaughter is showing signs) but I understand there is often a link between the 2.

I was also fobbed off with a fibro diagnosis when that was absolutely not the case. I believe many fibromyalgia daignoses are actually b12 deficiency as this just isn't tested routinely or treated properly.

I'm not keen to have any label but I am keen to discover just what it is that is making me feel like crap day in and day out so I can manage the symptoms much more successfully than I am now.

Every time I try my own 'research' into these symptoms fibromyalgia comes up time and again.

I think this is probably the route I will need to go down, regarding my folate and B12.

Where do I even start? Which consultant would I need to see privately to gain information regarding a possible b12 deficiency, a haematologist?

I have Joint Hypermobility Syndrome (not EDS). I was diagnosed by a physio, who also said I have fibromyalgia as a consequence of JHS. The symptoms wax and wane. She sent a report to my GP who was not interested (but I didn't expect them to be).

The diagnosis is useful in the sense that I know why I have regular injuries, can't do certain things etc. But that is as far as it goes. I have to manage my own symptoms the best I can. So it hasn't really made much difference to me, except that I know what it is.

I have many chronic injuries and have to be selective with type of exercise, nothing high impact. So walking, swimming, yoga (being careful not to overstretch).

I'm sure you've already seen the NHS page on fibromyalgia, but this link might also be of interest to you

https://www.hypermobility.org/what-is-hypermobility

There isn't a specialty for B12/Folate Deficiencies as, like EDS, it affects the whole body so is treated on symptoms. Gastroenterology should be able to diagnose and treat, as should Haematology, but this generally isn't the case (I've been down this road as like PP said, vitamin deficiencies are comorbid to EDS)

The specialist mentioned already is here https://cambridgeironandb12.com/ I'm not a fan of his for various reasons but unless you can get a recommended speacialist in your area, then he's better than nothing. But he will expect you to source your own B12

You can buy injectable B12 vials over the counter in many other European countries, and they export them to the UK (all legal, as long as solely for your personal use). These are official pharmacies, so it's perfectly safe. All my doctors/consultants know that I top-up my NHS-prescribed vials with these, and are happy for me to do so

Thank you. That's really helpful.

I saw Dr Andy Klein, look him up, you can consult over Teams if you can't get to his clinic in Cambridge. As you've been iron deficient in the past he'll want you to get up to date bloods including a full iron panel, b12, D and folate xx

The clinic is 60 miles away from me so luckily I could get there with ease. Thank you.

StrokeCity Can I ask why you are not a fan of Dr Klein? I ask because I am desperate to find someone to help with whatever is causing my health issues, however, I am on carers allowance so money is tight and as I have already wasted £££'s going down various dead ends trying to gain better health I am wary of spending anymore money unless I can feel rest assured the person I am consulting with is genuine.

@CornishPastyLover The main thing is that anyone I know of who has had appointments with him, was then told to source injections themselves, rather than him offering support to go through their GP. My opinion is that it's grand to source your own if you need them more often and are established on them already, but that you should have at least your first one in a medical setting and be shown how to inject. Any other private consultants I'm aware of who have diagnosed B12 Deficiency, have then written to the person's GP and requested they are given 'loading doses'. And I feel he charges a lot for what he offers, but people are desperate and so willing to pay it. But it's just my opinion, plenty of people are very happy seeing him

Ah, yes that does make sense. I have googled but I can not find anyone specialising in B12 issues in my area. There are plenty of beauty salons and even dentists offering B12 infusions but none are 'experts' and won't diagnose.

Seems the UK is a bit thin on the ground when it comes to private B12 experts.

I had loading doses at my GP, and then nothing more, not even the 1 x 12 weekly i jections, that are quite frankly useless as they are not frequent enough.

DR klein wrote to my GP with his recommendations for further testing that I had to push for. Ive since been diagnosed with Polycythemia as a result of blood tests recommended by DR Klein. Unfortunately the NHS will not treat b12 deficiency properly and are in breach of NICE guidelines. I have nothing but praise for Dr Klein.

Don't go to the GP and say you think you have EDS or fibromyalgia, go in listing your symptoms and emphasising how much it impacts your life. Ask to be referred, probably rheumatology, but gastro should be on it too. Fix the low folate, so any symptoms related to that stop clouding the picture.

I take it they've ruled out coeliac?

Don't push for a fibromyalgia diagnosis, it doesn't help you at all, get everything else ruled out first. I think, given the gut, there is more going on, which will sound scarier but actually be treatable. If you are wrongly diagnosed with fibromyalgia, you'll not know.

@CornishPastyLover There's an amazing support group on Facebook that might help with finding a knowledgable consultant near you (if there is one). Their Files section is full of really indepth, well researched info

https://www.facebook.com/groups/PAB12DSupportGroup

Also, (sorry for all the posts!), the UK EDS Charity runs area-specific Facebook support groups, you have to sign up as a member on their website and then they'll send you a link to your closest one. You don't have to have a diagnose to become a member, suspecting you have HSD or EDS is enough. You may find that someone in your nearest group can recommend a consultant that they've seen

https://www.ehlers-danlos.org/

I've tried that though, taken a long list of symptoms and I am told they have a one appointment one problem policy and appointments at my surgery are so sort after they very rarely allow double appointments, everything is now done via the Anima app. I never get my full symptoms list looked at.

My gastro isn't interested either. I've had two colonoscopies, a gastroscope, a BAM scan (and various tests for coeliac disease, h pylori etc). She has ruled out anything serious and after each yearly follow up, which is a 10 min telephone appointment she has health anxiety written up on each follow up letter. I don't have that. I'm.anxioys because of my symptoms, yes of course I am but I don't have health anxiety.

I have contemplated consulting with a private GP to see if they could send more time going through my symptoms list. I honestly don't know which way to go with it tbh. I really haven't had much luck with the GP surgery. Each time they try fobbing me off with antidepressants.