Need help please

[Lily-May]

Hello,

I have recently been diagnosed with PBC and Fibromyalgia and suffer with severe joint pain. I don't go to see a Gastro-enterologist until mid June and was wondering if anyone takes cod liver oil to help with joints or any other supplements/vitamins that may help for that matter?

I am taking amitriptyline and co-codamol for the pain but its just getting worse and don't want to increase these meds more than is necessary. Not sure what I am allowed to take with PBC and what is not advisable.

Help would be great, as I am really feeling down at the moment.

Tracy

[Wendom]

Hi there my liver consultant told me to start taking omega 3 I was taking one I bought but my gp has now put me on a prescription onega 3 one a day my vit d was low so I take that on prescription too if you haven't had them done get calcium and vit d bloods done also liver consultant told me to take zinc eat onions and garlic and oily fish also I was told stay clear of anti inflamitorys like ibuprofen if you give the pbc foundation in Scotland a ring they will give you more advise take care x

[Lily-May]

Hi Wendom,

Thank you that is very helpful. I have already increased the amount of oily fish I eat as I also have high cholesterol. My GP took me off the anti inflammatory's when the PBC result came back on my bloods. Several people have said I should take cod liver oil capsules but I wanted to check before I did that. I will also ask them to check my calcium and vit d next time they check my bloods.

Thanks again x

[HeidiLucy]

I have PBC stage 2 and my teenager has Ehler Danlos Syndrome. His EDS causes episodes of severe joint pain. He has even needed a wheelchair at times.

Here are 2 non medical ways to relieve pain which might help.

He did not tolerate needle acupunture so the acupuncturist sold us a "Piezo Pen" which works the same way. It is a small hand-held nerve stimualtor. Relieves the pain by sending an electrical pulse. It feels like a static shock (when you were a kid). He zapps himself around areas of pain. It "distracts" the nerves. Funny, if I touch him when he does it I get a second hand shock which is stronger!

Also, he takes an Epson salt bath or puts he feet in a bowl of warm water with Epson salt. Epson salt contains Magnegsium which is absorbed through the skin. Increasing Magniseium helps with pain. My son's genectist feels this goes to the muscles better than taking a supplement. I think it would also have less effect on the liver than an oral pill.

Also low vitamin D levels can increase existing pain.

I hope this helps.

Heidi

[mumofthree in reply to HeidiLucy]

Great tip Heidi, anything is worth a try

[Lily-May]

Thanks Heidi, will definitely try the Epsom salts.

[Annflanagan]

Hi, i take lipronal for the joint pain, couldnt live without it, over the counter at the chemist, also vit d, sulpments iv tried a lot of pain killers at the moment arkoxia and parasetmonal seams to be working, also taking a bath with about a small cup full of epsom salts helps aswell