Didn't know I have Fibro

[Q0pain]

Been to GP a number of times about pain in various places, R arm shoulder, neck, lower back, hips, knees and had MRI showing mild degeneration in lower back, still waiting for an MRI to check shoulder, also have issues with sleeping, low mood, IBS symptoms and migraines which has been with me through out my life. GPs (each time a different one) not given a diagnosis yet but the pain clinic Dr mentioned fibromyalgia in his letter to GP which I only saw today when accessing my records online, GPs never mentioned it is a possibility of my symptoms. I read treatment are exercise which I have been doing such as yoga and taichi but relief is short term. I'm reluctant to take too much medication having on paracetamol and ibuprofen for a majority of my life and now developed allergy to paracetamol and have GERD. Tried some other meds, none seems to work. Are we doomed to be on medication all our lives because of fibromyalgia? Has anyone found alternatives?

[bookish]

Hi and welcome. Many people find things that help them so hopefully you will too. Personally I don't think that the causes of fibro are the same for all of us, in the same way that restless legs don't have the same cause for all sufferers, so what works for me may not work for you and vice versa. I'm hoping that as you have access to your records you can see if they have checked your vit B12, and if so, what level was it (and were you taking any B12 or B complex when tested or since). Many of your listed symptoms could be a B12 deficiency, these are common and commonly missed as not as easy as you might think to diagnose. Even if it is not the cause, being low will not be helping. A long time taking paracetamol will have depleted your glutathione (one of the body's main antioxidants) and glutathione levels generally correlate to vit D levels too, so would be worth double checking what your D is. Glutathione itself isn't easy to supplement but you could try more sulphur-rich foods, vit C and selenium. I found magnesium particularly helpful although I use it on the skin rather than take a supplement. Best wishes

[Q0pain in reply to bookish]

Hi Bookish,Thanks for your advice.

I had numerous blood tests, all normal so far few months ago my B12 was higher than usual, not sure why, so don't think I'm low on B12, may be low on Vit D as I don't go out much, taking supplements though often forget, think I should start setting reminder to take.

Don't think the GPs I seen so have much experience, all seem very young. I'm also not at keen on taking antidepressants, amitriptyline is what was prescribed before, too worried about side effects, I would rather cope with exercises. I'm looking forward to see the physiotherapist to find out what exercises will help.

[bookish in reply to Q0pain]

Hi, if your B12 was high without supplementing then that could indicate something else going on - a temporary high B12 could be due to an acute illness or high inflammation which resolves, but persistent high B12 could be due to red cell breakdown or a liver issue etc. But it does not mean that you do not have a functional B12 deficiency. And B12 and folate (B9) and B6 (in fact all the Bs) work so closely together that the whole process needs to be running smoothly and cleanly. If it isn't you usually (but not always, that would be too easy!) get raised homocysteine and MMA (methylmalonic acid) as pointers of 'burning dirty' waste products. There are no tests to rule out a B12D for certain.

Depending how low your Vit D was and how long since tested and how high your occasional supplements, it might be worth testing again (which you can do on a fingerprick at home test with an NHS lab like here vitamindtest.org.uk/ ). Then you can see how much you might be best supplementing with to get you to a decent level as quickly as possible. We all vary hugely in how we absorb so a good idea to test, supplement if/as needed then retest so you know you are going up but not too high. Magnesium is needed for vit D metabolism and vit K2 helps the increased calcium go to bones and teeth not soft tissue where it is likely to become a problem (D helps you absorb more calcium from food etc).

I took amitriptyline for about 14 years but could only tolerate a very low dose (found out later that genetically I don't metabolise it well). Over that length of time it may deplete folate and B12 (and the reason I was taking it was sadly already due to a folate and B12 problem which hadn't been diagnosed, as with several of the other meds I'd been put on - so I got worse!) It did help a bit at a low dose, and some find it really helpful, but I struggled to get off it and all the others. Magnesium works better, for me.

Best wishes

[Q0pain in reply to bookish]

Hello Bookish,Thanks for very helpful information, I will check out the website and see if I can get tests done. My recent blood test showed elevated ERS which indicates inflammation but when tested again two weeks later, GP it back to normal so that was that. I do take some magnesium but not everyday, will try daily for a period to see if this helps.

Many thanks,

[Cotswolds25121 in reply to bookish]

A lot of sound advice from you. Thank you 😊 x

[ChristCornHell]

You have at least come to the right place for advice as fellow sufferers can tell you more than the average G.P. I think that a lot of G.P.'s are scared of the word "fibromyalgia" as they know very little about it. In one short phone "appointment " you are usually just allowed to talk about one problem, IF you can say firstly it is my fibromyalgia AGAIN, You can usually talk about a couple of related problems. Yoga, swimming, tai chi etc MOST exercise have been proven to help with depression,(and boy do we need help with the depression ;-)but they also help you to stay mobile and more supple. IF you are prescribed something there is no harm in trying it, and if you have to take medication for life then if it's helpful there is nothing wrong with that and no shame in it. As I have said ask questions on here for the chances are more than one other person will know exactly what you mean and advice is priceless. Try not to let it dominate your life, do what you can, when you can. ALWAYS remember that you are not alone, we are ALL here for you and dealing with similar problems. O (BIG GROUP HUG)👍

[Q0pain in reply to ChristCornHell]

Hi ChristCornHell,Thanks for the encouragement. On good days I definitely try my best. Most of the time I try to manage the pain with yoga and taichi. On bad days the motivation is difficult and even if I manage to do them, don't seem to help much. I really don't like to take meds if I can help it, don't want further problems like what paracetamol causes now. So I'm keen to try anything that helps but less or no drugs.