Pain Support Group : Hi all, So I... - Fibromyalgia Acti...

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Pain Support Group

Laura407 profile image
8 Replies

Hi all,

So I have my first day on the pain support/management programme next Thursday (8 week course for 3 hours a session) and am very unsure what to expect! Has anyone else been to one? I was told it would only be fibro sufferers but I'm not sure but luckily my work have agreed to fund half of each session so I only need to make up 1.5 hours (and still have a 1 hour lunch break) otherwise I would not have been able to attend.

Nervous and not hopeful come to mind!

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Laura407 profile image
Laura407
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8 Replies
Teddysmum43 profile image
Teddysmum43

I've been to the fibro coping skills course so no a pain management course as such but similar. I'm not gonna lie it was tough just getting there and physically being there,I was in agony the whole time,however I did learn a few helpful things,like pacing etc but I did that six years ago so I'm guessing there may be new strategies now.i would thoroughly recommend learning meditation,it's really really helping me. Good luck on your course,where are you going to do it?

Trikki profile image
Trikki

Hello Laura...I think I gleaned more from talking with the others than I did with the actual course...BUT mine was run by the NHS and was only 2 hours long for 4 weeks. Yes, pacing is the one thing I had to acknowledge which I wasn't very good at!!!! This was a long time ago so things may have changed. I learnt about what aids are available and talks on medication/what to do in times of crisis (flare ups nowadays!) sleeping positions and diet. Hope you find lots of useful info. there....xx

1881ellie profile image
1881ellie in reply to Trikki

Hi Trikki can I ask you what you learned to do in flare ups and sleep position and diet.I read your post and thought I'd ask.thanks x

Trikki profile image
Trikki in reply to 1881ellie

Oh Ellie we all learn our own ways of sleeping through trial and error...mine at present is I pillow for head....1 pillow between my legs and 1 at my back....not much room for hubby though!! At one time I actually felt less pain sleeping on my back almost regimental!! Strange but true! Flare ups.....Yet again we all cope differently and I am fortunate I don't have children at home nor do I have a job...Whooopee!! So tend to have a cup of tea/toast in bed (brought by hubby) take my meds if the time is right then try to either sleep, drift (Tramadol!) or read...when pills kick in I have planned what to do....put washing in machine...tidy kitchen..then back to bed doing (or trying to do!) some relaxation...Life is so exciting!! Maybe write the shopping list...not that I go OH does all the shopping. It isn't all bad I do have days where I spend my time in the garden pottering and finding jobs to do that really need to be done.....I also am Editor of our local Newsletter (monthly) and that takes me some time as it usually ends up about 5/6 pages..........You will find your way to cope but it takes time...I have had Fibro for 20 years and am still here the only thing diet wise, which I find doesn't help is lots of tomato and red wine!! Have a comfortable night! x

1881ellie profile image
1881ellie in reply to Trikki

Trikki thankyou for replying.I to sleep with a few pillows am going to try one at legs as they cramp or are restless that makes getting to sleep so hard.I was bed ridden with carers until I got better meds,I can't work ,children all left home and hubby does everything but he still works.I've had fibro 10 years made worse by perontinits and sepsis 2008.I had colostomy and 2013 ileostomy. Thyroid. In last year and Hydrosalpinx and cysts on ovarys,can't operate due to scar tissue and adhesions so tumour markers every 4months and full bloods.also kidney function low I I have to attend renal unit.they think out put from stoma high and naproxen attacked them was on it years,I was put up to 50 fentanyl patch last nite and I took it off today it was awful.I couldn't wakeup and was craving the oxycodene that they stopped..pharmacy said take patch off and go back on dihydrocodeine and oxycodene so I have and now in pain,but the high fentanyl I think I would say I was out of it.I don't drink at all or smoke.lam so illness can't be blamed on that,took them years to admit it was fibromyalgia, glad I found this group somewhere I can come and have met you and others and tips to help each other,life stands still and family don't understand as like us all we look fine.I have 3 grandchildren who i love dearly but I miss out as want to take them places and can't. You have nice nite to and thankyou x

Hi Laura, that sounds like the one I did it wasn't just fibromyalgia sufferers, though it was people with chronic pain. The 8 week course I did had a huge focus on mindfulness, but also looked at the way our thoughts and perceptions influence our pain (That inner voice that tells you there is nothing wrong with you, you're just lazy, feelings of guilt etc) and how we can challenge/quieten that voice and having things prepared that help us relax & feel calm so when a flare up starts and we can't think of these things we have a list or a box prepared and we looked at pacing - which even after 20yrs of fibromyalgia I still suck at, at times (today being one of those times). Some of it was stuff I already knew and some I still can't accept but what I found most beneficial was talking to people who understand and not having to 'put my happy socialising face on was great. In my group there was no pressure from those leading it to participate and as a group we did all get on. While some days it took monumental effort to drag myself there for 3hrs in uncomfortable chairs I say it was worth it. I'm just waiting for my follow up appointment which should come through soon.

Sorry it's so long, hope it helps. x

My 8 week course, was not just for people with Fibromyalgia, but sufferers of any chronic pain condition. We all got on well in my group, so that was a bonus. Nervous on first meeting, but then, we all were! It was great just to get out the house, and have company. So don't worry, it will all be fine. At my group we even had pillows and foot rests. Not sure if all groups offer that though?

Gentle hugs. Tracy xxx

TheAuthor profile image
TheAuthor

Hi Laura407

I have not been on this myself but I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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