hello, im new to fibroaction - Fibromyalgia Acti...

Fibromyalgia Action UK

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hello, im new to fibroaction

caninecrazy profile image
17 Replies

hello everyone,

I was told I have fibromyalgia on Friday, I have had S.L.E (lupus) since 2005 and had put all my fatigue and muscle pain down to that but my blood lupus levels have been steady indicating no flares during times of bad pain and fatigue. ive been given Duloxetine to help with the fatigue,pain and depression do any of you take this med too please? does it help you? its just im always concerned putting more meds into my knackered body.

I am a member of lupus uk healthunlocked and they've been a lifeline for me with endless knowledge from people who know what its like to live with. im hoping to make friends here too and learn how I can help ease my pain and fatigue by asking you too.

any advice will be gratefully received, thankyou x

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caninecrazy
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17 Replies
jillylin profile image
jillylin

Hi Caninecrazy,

welcome :-) . You have found a very supportive group here and I know you'll soon feel at home . Not up to much myself at the moment but just wanted to welcome you.

Hugs

Jillyxx

in reply to jillylin

sorry that you are struggling at the moment , Jilly sending you lots of hugs and hoping for an improvement soon sue

Hello and welcome to the site, sorry I can`t answer your question on duluxetine as I have never taken it .with a name like canine crazy you should fit right in. Someone will be along soon to help and advise you. In the mean time why not join on posts where the subject is on dogs and hamsters hugs sue

bluebell10 profile image
bluebell10

hiya, welcome to the site,i don't have any advice on duloxetine but someone here will.this is a very good friendly site & i don't know were i would be without my fibro friends,there is always someone who will have an answer to anything,for pain i would say make sure you keep on top of medication,as i very painfully found out by trying to cut down,as for fatigue i really don't know as from my experience when it washes over you all you want to do is sleep,sorry i really don't know what can be done about that.hopefully someone will know for you x

Hi Caninecrazy,

Welcome, you are definitely in the right place to make friends who understand what you are going through, and who love dogs too! I'm sorry you have the double whammy of SLE and Fibro, though it's good to hear that your SLE is currently stable. I'm going through tests for diagnosis for Lupus or similar with rheumy/dermatology but it's early days, and so I'm struggling a bit with the unknown - but there are a few of us on here in the same boat.

I take Duloxetine and have done for approximately 3 years, and I have to say it does really help. I tried both gabapentin and pregabalin beforehand and neither agreed with me, the side effects were awful and the pain relief minimal. With duloxetine I see a big difference, although I do supplement it with codeine, modified-release tramadol and celecoxcib too. The only real side effect from duloxetine is an increase in night sweats/chills - but since these were already a pretty big problem for me it's hard to say exactly how much of that can be attributed to the Duloxetine, rather than due to my symptoms changing.

I hope this helps a little? Let me know if I can answer any other questions...?

What type of canine are you crazy about? I have a 1yr old lab x cocker spaniel who is bonkers but adorable. He gets me out of bed in the morning.

I hope you find this site as warm and helpful as I have

Alex xx

TheAuthor profile image
TheAuthor

Hi caninecrazy

Firstly, welcome to the site and I sincerely hope that you find it as useful as I do. I have been given the same piece of advice from so many people on the forum and that is to pace yourself so you don't get over tired and hence, even more pain. I can truthfully say from my own personal experience that this is sound advice!

I do not take Duloxetine, so I cannot comment on this but I am sure that as you get more familiar with your Fibro that you will be able to assess for yourself what is working for and what is not. So many people on the site say a medication works for them and others will say the opposite. As we are all unique individuals I think we must make our own informed decisions with our GPs as to what medication to try.

I sincerely hope that your opening posts are giving you a greater insight into what is happening for you and how to manage your illness? I also think it may be worth discussing with your GP about what to do next such as Pain management clinics etc.

All my hopes and dreams for you

Ken x

caninecrazy profile image
caninecrazy

a BIG thankyou to you all, I feel very welcome joining this site :)

I have a 6 year old yorkie x jack called cookie who's a bit like me as she's little and grumpy! lol, my daughter has dottie who is 5 years and a jack x lab (she looks like a beefy jack) shes was brought as a pure mini jack but didn't stop growing,i contacted breeder to discover she had lied about the stud dog! but weve got the best of both breeds as shes as soppy as a sack!

weve had a few dogs over the years,mainly rescues frm 8 months to 9 years being yorkies,whippets and whippet crosses.

we have tigger a DSH brown tabby who is 12 yrs and luigi a ginger n white 3yr old fluff ball! x

fenbadger profile image
fenbadger

Likewise welcome in. This is probably the loopiest HU group and I love 'em all. Also doggies get you a pretty well auto enrolment. :P :P

Can't answer the basic question though. It's getting more common to treat pain with low dose anti depressants. I've seen posts before so I'm sure you'll get the info you seek before long.

Don't know much about lupus. Fibro is neurological. Pacing yourself is quite important in control as is accepting changes. It may take months to find the right mix of medication for you so don't lose heart. We're all different. :) :)

Daft humour is good for taking your mind off it.

denvajade profile image
denvajade in reply to fenbadger

Hi fenbadger I am interested in your comment that fibro is neurological, can you tell me what that entails please as I have never been told anything substantial about my fibro, that may be because my RA gets more attention, really interested. cheers

in reply to denvajade

hello devajade..It would take far too long for me to go into the caurses of fibro. So if you go onto the yellow butterfly at the top of the page and then click on the website, you will find lots of info including what caurses fibro

If you have any questions after you have read it please come back and someone will do their best to ansere you...sue

fenbadger profile image
fenbadger in reply to denvajade

Thanks Sue. I was going to say much the same and recommend NHS choices too if that helps. There's much wiser information than mine out there. x x

How's you and Meg?

in reply to fenbadger

Megs fine my brain done in trying to answere a question further up. have a look see what you think...hugs sue

fenbadger profile image
fenbadger in reply to

Hi Sue Yeah, the only thing I can say about that - and I think I said this somewhere before - it's getting more common to treat pain with "small" doses of anti depressants. And it seems to work. I've had something similar to Duloxetine but not identical so I can't really speak out of personal experience. Is that the one?

hugs back - and some for Meg :) :)

caninecrazy profile image
caninecrazy

dear lipbalmaddict,

I already have night sweats, although not every night thank goodness. I was finally diagnosed with lupus when the butterfly had covered my face and chest as bloods don't always show whats going on with lupus.

dear all,

I think I will be brave and try this new med as I im finding work difficult, im making silly mistakes as I cannot think clearly due to fatigue. my body aches and I tire so easily. I do pace myself and sometimes take a afternoon nap. I work shifts of 4 hours as I cannot do longer without paying for it days after. lupus has really changed my life from being a work-a-holic to just part time.

thanks again to you for making me so welcome xx

madddyyy profile image
madddyyy

welcome to the mad house, i used to be mainly a read and move on as i was midiagnosed for 8 years and went through hell till i fianlly got put into my own pidgeon hole and since my profession/trade was the Navy you can guess how its been to basically do a 180 on my life. I hope you find the place good for advice and laughs, there are really nice and friendly people here.

andy

Hello again I think you have already worked out that my dog Megan is a collie. we have had cats in the past but are now down to 1 nutty dog and a crazy cockateil...sue :)

denvajade profile image
denvajade

thank you will do

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