Please please diagnose my DH

[childrenofmadness]

My poor DH has suffered with terrible joint pain in his hands, feet and sometimes legs and arms since he had major back surgery in February 2013 (disc replaced and spinal fusion).

He also frequently 'pulls' muscles, and recently felt like he had broken a toe, after running round the common barefoot in a summer game of 'it' with the kids. He seems to injure himself more easily than he ever did prior to surgery.

He has given up gluten for some time, as he discovered (accidentally) that this seems to cause flare-ups, and it seemed to make a huge difference to begin with, even his brain fog lifted, and he is very careful to never, ever go near it now. But he is by no means well now, although has good days sometimes, and even good weeks (occasionally).

He has been tested for arthritis and the bloods all came back negative. I don't know if relevant, but he was on Pregabalin for a long time for his back pain prior to surgery.

Sorry for the brain dump, just trying to include all potentially relevant details. Has anyone else experienced anything similar? Or is anyone on here a GP with suggestions of what else he should ask to get tested for? Our surgery seems to be at a bit of a loss as to what do do with him. Any suggestions or advice much appreciated.

Has he been tested for coeliac disease? Has his vitamin d levels been tested?

Has the GP considered Lupus?

Has your DH been tested for gout? It may be a useful next stop if it's mainly his joints that are affected.

www.nhs.uk/conditions/gout/Pages/Introduction.aspx

His vitamin D was low a while back, and he did take supplements for a bit. I should get him to get re-tested for that I guess, although there's been so much sun this summer, I can't believe that could be the culprit, could it?

He hasn't been tested for coeliac, as I think you have start eating gluten again for them to test your gut, don't you? And he flatly refuses to do that, such is the effect at this stage, i.e. when he accidentally eats a sausage or something that isn't gluten-free, all the aches and pains come on with a vengeance.

I will get him to ask about lupus - is that another auto-immune disease?

Personally, as someone whose coeliac disease was diagnosed after years of serum negative arthritis, then I'd say he needs to stay well away from gluten (and check for all the trace sources of it like oats, barley malt etc) and get his vitamin D levels checked, plus a bone density scan.
Does he take a 'bone health' supplement with calcium, vit d and magnesium? I used to have huge problems with cramp until I took regular magnesium, and treated coeliacs still tend to have problems with calcium and vit d levels

Yes Lupus aka SLE is an auto immune disease xxx

Have a google for "The Beighton Score" its how they test for Hypermobile Ehlers Danlos - speaking from experience, this makes people more prone to injury due a collagen defect & been off his feet with surgery could weaken his joints further & make things worse - he will need tailored, EDS aware physio to strengthen his muscles, so they compensate for weak joints.

Also look at Pernicious Anaemia/B12 deficiency - this is linked to EDS as its needed to produce collagen & low B12 causes all sorts if scary symptoms - & back trouble too - do not give him supplements though, as they wont help & will skew test results - he needs, B12, MMA, IF, Parietal Cell Antibodies, Folate, Ferritin & Homocysteine blood tests to check for this. Some drugs, which he might well have had due to the surgery & back pain, deplete B12 - our experience has been that there is a scary lack of knowledge amongst doctors when it comes to B12d - anything under 500 on a serum B12 test is of concern

Also get his vit D checked, deficiency is common & causes pain etc too

Magnesium could help him

Good luck

His Dad had gout, so that's definitely worth getting tested too.

CMOTDibbler thank you - that post really resonates. I will get him a bone health supplement - can you recommend any particular brands? Also to ask the GP for a referral for a bone density scan.

This is giving me hope. Can't bear to see him struggling so much all the time.

I'm not a health care professional however the brain fog and different joint pains resonated with me as I know a few people diagnosed with fibromyalgia who had similar symptoms

Wow, thank you RockinHippy. Have heard EDS mentioned before on these types of threads. Will have a google and stay away from any supplements until he is tested... May print out this thread for him to take to the doctors surgery - do you think that will really piss the GP off, or are they used to it at this point?

I know a few people diagnosed with fibromyalgia who had similar symptoms

You are right, fibro does have similar symptoms, but its a bit of a waste basket diagnosis & is actually, commonly misdiagnosed B12 deficiency as is CFS & M.E. - took 14 years for me to finally get the correct diagnosis. Over 7 months battle for treatment & diagnosis for my daughter too - yet 6 B12 injections had her walking again !

Yes, I thought the same thing about fibromyalgia - I really don't want that to be the diagnosis as it seems to be what they tell you if they can't properly diagnose the real culprit.

I'd suggest he tries an elimination diet to see if it's more than just gluten which is causing these issues.
A good- though older- book is Food Allergy and Intolerance by Prof Brostoff, one of the first immunologists to link vague symptoms with food. It's main stream- he has worked in the NHS ( though now semi retired) . The book has various stages of the diets so you start at one level then reduce even more if it doesn't help.
Worth trying for a few weeks.

Worth mentioning - Ive seen a lot of people on the Facebook Pernicious Anaemia & B12 deficiency group whose allergies have disappeared with adequate B12 injections - this includes my daughter, who had allergies to Soy, Cochineal & a ŵhole list of intolerances including lactose

All now gone

yes, I thought the same thing about fibromyalgia - I really don't want that to be the diagnosis as it seems to be what they tell you if they can't properly diagnose the real culprit.

That pretty much sums it up! Once you have that label they tend to stop looking, blaming EVERY new pain on fibro - that included gallstones for me

I have a good friend at the moment. They are insisting she has fibro, even though her serum B12 is low, but considered borderline at her surgery (would get treatment automatically at some) & they are refusing to follow NICE guidelines & try a therapeutic trial of B12 - shes having to change GPs after 25 years with the same one!

Oh & I wouldn't recommend printing this off for your GP, too many see that badly & presume you have been looking at dodgy sites

Make a list of ideas & blood tests, mention that you are trying to help as you realise that as a GP that they are under a lot of time pressure, mention having looked on the Patient UK site (GPs use this) & that you have followed links from there to other sites & these conditions jumped out at you both as fitting his symptoms & could he please have the following tests - hand over a written list

IgE & A tests are useful for spotting an Allergy, so add those too

If he has had drugs such a pregabalin/gabapentin, nitrous oxide (possibly used during surgery) Naproxen, or PPIs such as Lanzapronole for reflux, mention that these are on the Pernicious Anaemia Societies list of drugs that deplete B12 & his symptoms are worse since taking them

Im adding a form which could help if its B12 d

You could safely give him magnesium now - Epsom salts in a bath in foot soak is good, otherwise tailor the type of magnesium to his needs - adding a photo for that too...

I have fibromyalgia, however, im not convinced by this diagnosis. I do have b12 deficiency, i have been on injections for 9 years with no improvement in symptoms, in fact i am getting worse. Not sure where to go from here . Once fibro is mentioned, things are not investigated any further so i hope he doesnt get a fibro diagnosis

Hyacynth

Do you take the co factors ?

Are you getting frequent enough injections ? The typical NHS 4 a year is rarely enough & many give up with GPs & order supplies for self injecting & see a huge improvement

If you are on facebook, I Highly recommend the group n there
"Pernicious Anaemia &'B12 Deficiency Support"

• its thanks to them that I got treatment for my daughter & got her walking again & much more.

Rarely theres other things going on, my case being one, but at least now they are looking properly & no longer fobbing me off - probable benign tumour on my adrenal gland is causing low potassium, which is made worse by B12 as it needs potassium to work - so fir noe, I need to take it alongside B12, or I feel awful

Wow rockinhippy thank you so much for all that brilliant info - I am so grateful, as is my DH. I am so sorry to hear that you struggled with a diagnosis for so long, but glad to hear you & your DD well now.

'Scuse my ignorance, but what are co factors?

No problem Children - I just hope it helps & you get him some answers & help.

& thank you, we still have a little way to go with DD, but she is 90% better than she was, though sadly it was extreme. She needs more frequent B12 than she is getting, but I GP is much more open to listening now, so we are very hopeful that won't be a problem.

Hyacynth

Co factors are the other things that a vitamin/mineral needs to work properly, it uses up when it is working, so it can deplete other vutamins/minerals if you don't top up on those too - some, like folate for example have the same symptoms as B12 deficiency

For B12, you also need to be taking...

Folic Acid(or Folate, which is readily bio available Folic Acid - some people cant process FA either, so need this)

Magnesium
Complete B Vits (B6 is needed, but can be toxic in higher doses, so this is the safe way to get it)
Lots of Potassium rich foods - coconut water is an excellent one

For Vit D, its...
Vit K,
Magnesium
Fat, such as coconut oil or even butter as its fat soluble

The group I mentioned above have files with all of this info & much more

Hope that helps

Apologies for the cyber stutter

I have the same symptoms, and more, including terrible brain fog, severe lack of stamina, occasional weakness, food allergies and chemical sensitivity. These symptoms were triggered by surgery three years ago. I have a diagnosis of CFS/ME and fibromyalgia.

I do have severe vit D deficiency, Hashimotos, and have had to plead for a B12 blood test which is a couple of weeks away.