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Fybromyalgia

(13 Posts)
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vivonce Sun 02-Jun-19 23:01:23

Sorry, I should have put OK-CBD, not the other way round. The old brain gets really foggy by 11 p.m.

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vivonce Sun 02-Jun-19 22:55:25

The one I got from CBDOK (daft name!) online, has an added vanilla flavour. It makes it a bit too pleasant, so 2 drops twice daily seems not enough - the flavour is certainly not horrible!

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annep1 Sun 02-Jun-19 22:40:28

I got CBD oil from H&B. Its horrible taste. Impossible to take.

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vivonce Sun 02-Jun-19 22:32:08

I was hoping to be prescribed Pregabalin, but this year it was 'listed' along with substances less readily available, and doctors can be very reluctant. I only joined sufferers last year and seem to have missed out on remedies except for the one I sent away for.

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Tiggy19 Sun 02-Jun-19 16:02:29

I am on pregabalin - not exactly a steroid but some similar effects - the worst of the side effects settled down and it certainly helped with the pain. Unfortunately after a few years it can become less effective so I may have to come off it and try something else.

Coming off can be difficult due to discontinuation syndrome so I'm not looking forward to this, but it was still worth it to have a few years of being more active.

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Cherrytree59 Sat 01-Jun-19 16:27:13

I think if you look Vivonce that your post Xed!

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vivonce Sat 01-Jun-19 16:07:45

Erm, I just said!!.......

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Galen Sat 01-Jun-19 16:02:33

Steroids are prescribed for polymyalgia rheumatica. An autoimmune disease.

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vivonce Sat 01-Jun-19 16:01:32

Steroids are prescribed for POLYmyalgia, whic h has many similar symptoms but is an illness of the immune system. It was believed at first that I had it, till blood tests proved otherwise.

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Whitewavemark2 Sat 01-Jun-19 15:31:53

I thought steroids were prescribed or perhaps I’ve got the wrong illness?

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vivonce Sat 01-Jun-19 15:31:47

I too have a little bottle of CBD oil from CBDOK, online order! Like my Hemp Oil capsules, it contains minimal cannabis but with the whacky ingredient removed.!

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paddyann Sat 01-Jun-19 15:18:19

although cannabis has been legalised for medicinal purposes its nigh impossible to get it prescribed.My daughter has Fibro and hyper joint mobility syndrom and PCOS and a few other things that mean she is confined to bed a lot.She's been buying CBDoil thats not medical strength and has had some success with the latest company she has tried .We live in hope of her GP being able to get the medical strength for her

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vivonce Sat 01-Jun-19 14:52:11

Painful shoulders and arms can be part of Fybromyalgia. Also hands, collarbone, back , legs and toes...in fact 'seizing-up all over'. Plus indigestion.
Re widespread nerve pain. UK doctors still have some ignorance about Fybromyalgia , neurological and affecting also muscles, ligaments, tendons and joints. GPs usually have no helpful prescription to offer. Whereas, in the USA, the widespread remedy is medicinal marijuana or cannabis, now that most states have legalised them for health-aid purposes.
Mine began last year following a head injury, in my mid-seventies but younger people are usually affected. I am getting good results from Hemp Oil Capsules.

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