Fibromyalgia- do you accept diagnosis?

[itwillbebetter]

After 18months of ill health my diagnosis has come down to fibromyalgia. I have exhausted myself and spent a lot of money trying to get to bottom of my issues. I have had every test, scan, MRI possible and now it comes down to this in addition to hashimotos (which is bring treated with NDT as well as gluten free)
I really don't believe it but with nothing else showing up I have no where else to go. I have been tested for every vit & mineral deficiency going as well as stool samples, wee samples, saliva testing, diet exclusions.
I just wonder how many others don't truly trust their diagnosis?

I've got to add to those saying that diet etc can really help, I can't tolerate artificial additives at all, neither can my daughter - with hindsight my mums health was far worse, because as a disabled diabetic she relied too much on sugar free, additive laden microwaveable foodstuffs

We eat only a clean diet, it's no miracle cure, but boy do I know it if I eat anything with artificial additives, I get very ill very quickly & so does my DD

Taking that even further, my DD was hospitalised a while ago with severe stomach pain, something they initially put down to IBS caused by anxiety over SATs exams - this turned out to be an intestinal blockage, plus allergic colitis - her allergy stats were huge!

We thought she was sensitive to wheat & dairy when her stomach was ill, turns out that was partially true - she actually has a bad allergy to soy - soy is in a lot of wheat based products ' so it's not the wheat she has an issue with, but the soy.

The hospital also took her off diary for a few months - turns out that she isn't allergic to dairy BUT we did notice that she had a lot less aches & pains when she wasn't eating any dairy - Fibromyalgia like EDS is affected by hormones, diary farming methods pump cows with hormones to produce more milk, plus milk has growth hormones in it anyway - soy is also a natural eostrogen substitute recomended during menopause etc, cutting out soy & cutting right down on dairy has helped us both a lot - DD loves cheese & cutting out altogether when she's not actually allergic, was too much for her, but she gladly cuts down to 2/3 treat days a week & that has been enough to make a huge difference to her health & I've noticed a big difference with me too

Treatments that I've found helpful, have been Manual lymphatic drainage, Chiropractic, actupuncture & using supplements such as Spirulina, Maca, magnesium riboflavin & aromatherapy oils such as clary sage, black pepper, juniper for pain & Rosemary for headaches, fogginess & exhaustion, Turmeric is also fantastic stuff if taken daily

HTH

Ah it seems that I am far from feeling alone with the disillusion!

I have spent the morning going over some of my test results with the help of stop the thyroid madness. RockinD and sanfairyanne I think you're right in that I am under dosed. I am going to up my NDT gradually by half a grain and see where that gets me. I guess I will soon know if I start to go hyper? Not sure though if I should take it in 1 dose or split it? Currently I take it just before lunch (can't take it in the morning due to high cortisol levels and it makes me really anxious!)

I have also seen that my b12 is on the low side (368) and folate is not overly high either (10.4) think that may need investigating too.

This comment piece from The Sunday Times today about the broadcaster Kirsty Young suffering from fibromyalgia might interest you www.thetimes.co.uk/edition/comment/kirsty-young-must-go-softer-on-herself-during-break-from-desert-island-discs-2pkjdbfbn

i'm a GP and this has been a really interesting thread to read. I have a lot of patients with fibromyalgia, and i agree it is a 'cover all' diagnosis.

My personal belief is that it means different things for different people. Undoubtedly medical science still has a lot to uncover, and there may be hundreds or thousands of conditions that we don't know how to test for or treat. I also believe for some people (maybe not the type of people prevalent on this thread) it is linked into subtreated depression. I think diet, lifestyle and exercise can have a huge impact.

Im interested in this thread as i suffer from a huge amount of 'muscle pain' and tiredness. Technically i could meet the criteria for diagnosis, but even i as a GP admit the stigma around this condition (not from myself i might add). That isn't meant to offend anyone, and due to my above beliefs i never marginalise or dismiss people that i see with it. But i know some people do.

However, i know a lot of my pain is actually down to a large amount of a combination of hypermobility, poor posture, and if i eat poorly or don't keep up a strengthening program. Its taken me years to figure that out. Theres no 'science' behind it so i could never specifically diagnose a patient wth similar or recommend beyond basic 'eat well and exercise'.

I think the other point i have as a GP is that if you feel you have had all the tests, maybe consider that sometimes there never will be a answer. As i said previously, we don't know everything about the human body. We don't know why some things happen. usually we work by excluding the bad things, and going from there. (obviously I'm not talking about being dismissive and not doing any tests to start with - i just mean that even as doctors we don't know everything and can't always give an answer as to what is happening).... we can only test for what we know.

Hi Vino this a very old zombie thread,

But as you've dug it up & posted as a GP, plus for anyone else interested, I now know exactly what caused my Fibromyalgia & of several others I know with the diagnosis, a few with M.E./CFS too. As you mentioned that you are Hypermobile, it might also be relevant to you too as there is a link, born out by animal studies & the number of people I've come across with both conditions & improvements seen in hypermobility when it's treat.

Pernicious Anaemia/Functional B12 deficiency, frequently missed by & a huge amount of ignorance amongst doctors with this condition as too much store is put on the blood figures over symptoms. I'm adding a link that has all of the good info, including guidelines in one place. Plus a symptom check list.

My daughters B12 was well in range, yet a therapeutic trial of B12 injections got her out of a wheelchair, walking & back in school again.

Turns out my serum B12 had been clinically low when she was born, helped along by a NO overdose & low normal or borderline low ever since. Yet I was still written off by my original GP as a complainer who couldn't cope with getting old & a new baby

Too late for full recovery for me, plus CKD means I couldn't take as much as I need to heal nuro symptoms, but I've seen improvements.

I'm currently battling with my brother haematologist for his treatment, his ignorance over this in a field he specialises in, is gobsmacking, despite other doctors listening & agreeing, he still keeps blocking the diagnostic "therapeutic trial of a B12 loading dose"

Please read up on this stuff, we understand that you don't study much on nutrition in uni, but we need more doctors who understand & treat this correctly. People are dying because of ignorance in this condition.

Thiamine deficiency & fixing that with high doses of it daily, has also cured hand pain I was told was osteoarthritis Too, plus other improvements. Low potassium has made me jumpy & prone to panic attacks, violent headaches, over heating & more. A supplement almost gives me, my true self back

Turns out I also had gastritis caused by h.pylori infection& gallbladder disease, which has contributed on my problems absorbing nutrients. All missed for over 13 years & 3 GPS.

I hope some of this helps you & others. There's a great Facebook group if you'd like to learn more, I'm sure they would love to have you on board. I can recommend Sally Patchcocks "could it be B12" & "what's wrong with my child" books on Amazon, these were a godsend to us

https://www.b12deficiency.info/

Gah, just read the whole thread not realised its a zombie, oh well, still interesting.

I have fibro. I have been ill a long time, since i was around 36, i am now 48. I was also diagnosed with b12 deficiency around that time and am on 12 weekly injections but have never got better. It all got severe around 6 years ago and i now cant work. I have IBS, lactose intolerance and bile salt malabsorption and loads of food intolerances so have a shit diet. I get constant sweats, dizzy, weak, headaches. I have neurological symptoms too, tingling, sunburnt skin. I have tachycardia, and coronary artery spasm.
I seem to be ageing before my time, now got arthritis and posterior vitreous detachments in both eyes, im not even 50 yet

Bloods are always normal its so frustrating.hate it.

BFG

Can I suggest you join the Facebook group in my attached photo. I'm guessing you are not getting enough B12, nor the co factor vitamin & minerals needed for it to work. Very few suffers get that information from their doctors & unfortunately within it all, your B12 will mostly just pas through you.

'This group will help you ...

Without it all, not within & BFD🙄