Help

It's my first time on hear.i went to the Drs today asking to be referred to a specialist or center who deal with fybro ,I was told there is none in my area.i requested for a consultant referral out of my area who I had found,I was told most consultants now refuse out of area unless I pay private due to increasing demands.I requested vit b 12 ink as research is showing this can help with cell repaire and using it for patients in USA for m.e. Suffers which can be under the same umbrella as fybro.I was told no luck unless ur endemic .I have a gut problem so obsorption can be effected he said buy tablets of b12 we no longer prescribe them. I am now going to the priory hospital Birmingham private for a consultation but not further treatment as I cannot aford it,just to see if there's anyone out there doing more research on micracondial repaire and fybro ,as I take oxycodone pregablin and dyhdracodine daily a fatal cocktail.Also have noted about cell changes with keytosis and have started a mild ketosis diet to help myself as I feel so desperate ,in pain and like the tin man.Its very interesting research out there ,but I wish there were more trial going on in this country. Not many Drs appear to want to help re exploring dietary changes or assist and support. Any one else that's had improvements of cures re vitamins or diet can you give me hope. I see on the internet people cured all saying pay to read my book and I'll give you the secret.if they had it realy they would make a fortune.

[Mdaisy]

Welcome to the FMAUK Community Hidden !

I am sure you'll find this community a helpful and supportive place to be ! There's lots of posts to read and many lovely members to talk to who to live with Fibro 24/7 too.

You've asked quite a few questions which I have answered as best as I can below;

1. Fibro specialists - Many of us have been referred to places like Guys & St Thomas' London to see Fibromyalgia Consultants (see link) in the past, my referral was 2012 (it was a fight then to get referred) and apparently as you've alluded to it comes out of a different pot. It is decided by a board meeting with all the cases needing treatment and as with all medical decisions it seems they probably rightly so, although not at all helpful for us choose the cancer patient over our needs. I know that isn't helpful and it seems totally unfair but they are dealing with budget restraints daily. I think if they actually knew how hard Fibro is to live with they might patients further up the priority list nearer the top! I am guessing the next step would be writing to your practice manager to explain the need and ask for it to be looked at again.

guysandstthomas.nhs.uk/our-...

2. B12 - Many people living with Fibro are low in B12, Vit D, Folic Acid among others. My levels were boarder line low and Consultant Dr Choy instructed my GP to treat with tablets although the absorption as you also mentioned was poor. It has been mentioned on here, that taking B12 sublingually from a Vitamin shop may be helpful as it seems anything that stresses the body functioning makes Fibro symptoms worsen.

3. Diet - I currently avoid Gluten, MSG, Processed foods and Aspartame which I feel helps a little. When I can afford it, I take Coconut Oil Capsules, Yeast Raiders, Lysine and MultiVitamin with a healthy diet.

4. Research - There's lots of research out there and as you rightly said some articles/websites offer 'snake oil' which is awful using the hope to be cured and praying on vulnerable people, so you must be careful. I actually wrote a post about research, see below;

healthunlocked.com/fibromya.......

I think I've covered most points, any questions please do reply with them. I expect other members will also comment with their experiences too.

As a newbie, please can I mention that members prefer to answer posts that are locked to this community only. If you wish to do this, here's a link that explains how to do it;

healthunlocked.com/fibromya...

Please can I provide you with the FMAUK website which has a wealth of information about Fibromyalgia which may be of help to you

fmauk.org

Enjoy chatting

Emma

[Jessamuels0730]

Have you tried gabapentin? That can help along with the oxycodone. My dr just advised me that the longer you are on pain meds the worse your bones more brital. If there is anything else you can take with your meds to keep on a low dose it better for you. I know your pain.

[Hidden in reply to Jessamuels0730]

I'm on pregablin the same thing almost

[Hhhhuiuikki in reply to Hidden]

Pregabalin is different to gabapentin. Completely different dose, price, side effects