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Fibromyalgia Action UK

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Hello. I'm new.

New_2this profile image
27 Replies

I'm new here and just wanted to say Hello to everyone. Not really sure what to expect from this but I'd love to hear other people's experiences with fibro. And how they deal with the fatigue side of things. I also suffer from Rheumatoid Arthritis so I'm pretty much in constant pain. I'm 30 and live in the UK. Thanks for letting me join your group!

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New_2this
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27 Replies
LisaSnow profile image
LisaSnowFMA UK Volunteer

Me too! New and in pain. I live in the USA and fibromyalgia is still lacking effective treatments. What pharmaceuticals do you get in UK? I have been put on gabapentin and it is limited in efficacy, but is superior than Duloxetine which knocks me out!

New_2this profile image
New_2this in reply toLisaSnow

Hey! They have put me on amitriptyline. It doesn't really do a lot though. I've just found it makes me like a walking zombie for half of the day. I have a review in 3 months time so I'm hoping they will prescribe something a bit more effective.

JayCeon profile image
JayCeon in reply toNew_2this

I was on amitriptyline for 4 months, collecting 8 side effects, none of which got better. What a relief to not feel like a zombie anymore after weaning it off. In the meantime I'd improved things that stopped me sleeping and the ami. was only drugging me to sleep thru a bit better and it never did anything against the pains or Ache or anything else.

Hopinggh profile image
Hopinggh in reply toLisaSnow

Hi there ! Im in the USA too. I started medical marijuana for pain and its not helping either.I want to try duloxetine down the road. When you said it knocks you out, do you mean it gets you unbearably tired?

Thank you.

New_2this profile image
New_2this in reply toHopinggh

Yes sorry, that's what I meant. Tired as in I'm not with it at all. Struggling to keep my eyes open. Like a zombie basically. We don't have medical marijuana in the UK, but I had read lots about it. What a shame that you have found it unhelpful. 😫

Hopinggh profile image
Hopinggh in reply toNew_2this

Hi ! I was referring to the duloxetine side effects.Thats too bad about amytriptiline.

Med.marijuana is making me tired, walking in slow motion, no noticeable pain relief. Im trying lowest dose of two tinctures that are supposed to be strong pain relievers.

There are so many brands and concoctions available.

There is probably something out there for me. Need to ask my dr.

Happy Holidays and hope you find some relief too !

Hopinggh

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toHopinggh

What dose of CBD do you take?

Hopinggh profile image
Hopinggh in reply toLisaSnow

Medical marijuana prescribed by dr. , cbd/ thc ratios as follows for two products are: 5/1 and 1/9 in tincture forms.

.5 mg or 10 mgs which is the standard starter dose

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toHopinggh

I haven't ventured out to oral use of CBD products but have tried topical cream (500mg CBD in 1oz volume) and it does take the edge off some.

Hopinggh profile image
Hopinggh in reply toLisaSnow

The cbd cream did nothing for me. Only one brand of cbd helped slightly after two months . Also makes me extremely tired. I am hypothyroid to begin with.

Wishing you well,

Hopinggh

Hopinggh profile image
Hopinggh in reply toLisaSnow

That might be a powerful potion! The cbd lotion i tried was a sample pack, small. I dont think it was as strong as yours

JayCeon profile image
JayCeon in reply toLisaSnow

I only tried CBD oil 10% oral high quality organic for five days, and it was only drugging me like amitriptyline was, which wasn't where I wanted to go back to. I need to sense my body to self-care and pace better and pinpoint causes and what helps, not get drugged, which ruins all that self-discipline necessary for that...

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toHopinggh

Yes I wasn't able to get out of bed for 48 hours just after one dose. Crazy!

New_2this profile image
New_2this in reply toLisaSnow

Glad it's not just me that found it that bad then!!

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toNew_2this

What biologics are you on for your arthritis? Have you tried yin yoga?

New_2this profile image
New_2this in reply toLisaSnow

They've put me on hydrocloxicoriquine to start with. What's yin yoga please?

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toNew_2this

It is a type of yoga that focuses on long resting poses in correct form to strengthen and stretch our muscular system. It also focuses on breathing to help your mind set into a meditative state. I would start with restorative yoga session 10 minutes a day if you have never done yoga before, then move to Yin yoga.

JayCeon profile image
JayCeon in reply toLisaSnow

For people who are thinking of yoga, and esp. yin yoga, I must say I was recommended specifically yin yoga by a pain doc and it's exactly the length of the postures of up to 3 minutes which rips me apart with cramps/spasms and drive me to tears. If at all I can only do 20 secs. a posture. The only type of yoga that's worked so far is normal yoga back exercises, with a bit of gentle movement, 10 repetitions in 20 secs. Similarly Qi Gong arm movements: If I want them longer than 20'' I have to lie down with arms up. But at least that showed me the benefit of "arms up", good for my Ache.

Hopinggh profile image
Hopinggh in reply toLisaSnow

Thank you. They said it takes two weeks to get used to it with side effects tapering off. I didnt know that was a side effect.I am very tired as it is.

Hopinggh

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toHopinggh

It is a very different kind of "tired". I agree most meds takes a minimum of a week for the body to "learn". Unfortunately for me I couldn't afford the week to get used to the drug due to work, or I would try toughing it out!

Hopinggh profile image
Hopinggh in reply toLisaSnow

I understand. Its a tough road, any road.

Hopinggh profile image
Hopinggh in reply toLisaSnow

Thats Awful. I took 1/2 pill of Tramadol and had 3 days and nights of leg cramps.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply toHopinggh

Oh wow I was more lucky with tramodal. No significant issues with it.

Hopinggh profile image
Hopinggh in reply toLisaSnow

Thank you. Just shows everyone's reactions are different . It was more like a drawing, pulling in my legs. I have neuropathy-fibro-hypothyroidism too.

Kitten-whiskers profile image
Kitten-whiskers

Good evening

Welcome to the Forum, its great to have you with us. This is a great site for offering support and information.

I can not comment on the Arthritis as I have not suffered with that (but I am sure someone else on here will be able to help you) as for fibro I am (thankfully, a lot better than I used to be) I have done numerous things to turn things around and they have helped. For Fatigue I did detoxes - which were suprisingly helpful for me, but I do have thyroid troubles as well.

I always recommend a book by Dr Leon Chaitow called muscle pain and Fibromyalgia, its bursting with great information, there are also youtube videos and radio interviews available.

I wish you the very best in your journery to better health

Best wishes

Debs

New_2this profile image
New_2this in reply toKitten-whiskers

Thank you for your recommendations. I shall certainly look into that! At the moment it just seems like an ongoing battle with no end in sight.

New_2this profile image
New_2this

I'm pleased you're in remission! Yes, I started suffering with pain in my mid-late twenties but it took forever to get diagnosed. However RA runs in my family so I wasn't too surprised with the diagnosis. No idea where the fibro came from though. That's just unfortunate I think.

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