How do you manage your pain? - Fibromyalgia Acti...

Fibromyalgia Action UK

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How do you manage your pain?

Zee1973 profile image
15 Replies

Good morning all, I was recently diagnosed with Fibro but haven't had much help with managing pain. Was wondering if anyone has been referred to a pain management clinic ? I take Amitriptyline at night but they leave me quite sleepy and lethargic the day after, and I am a lecturer so cannot really afford to feel drowsy ... any help much appreciated !

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Zee1973 profile image
Zee1973
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15 Replies
Furry profile image
Furry

Hi there, I was referred to a pain clinic which I found helpful, I also completed an expert patient course (2hours a week for 6 weeks) with other people who had a whole range of chronic illnesses. I found this helpful for learning to pace and manage tasks in a better way. I think I accessed this through the GP.

I also found amitriptyline made me very groggy the next day. I think taking it earlier in the evening instead of bedtime helps with this as the effects wear off sooner. I changed to nortriptyline which is so much better for me. No more groggy mornings.

I’ve found physiotherapy and doing yoga type stretches more beneficial than anything for muscle pain and stiffness.

We all respond differently to things so it’s a case of finding what works for you.

Hope this helps, take care.

Zee1973 profile image
Zee1973 in reply toFurry

Furry, thank you so much for your reply. I will ask my GP about the pain clinic and maybe suggest a change of pain killers ... thank you 😊

LoneEra profile image
LoneEra in reply toZee1973

The exercise side of things is also critical. Even the gentlest stretches can really help to reduce pain xx

Zee1973 profile image
Zee1973 in reply toLoneEra

Thank you for your reply, I have practiced yoga for many years but because it took me around 4 years to have a diagnosis, and the pain got so bad I was bond to bed .. I had to leave it. Still do some stretches at home though, and I agree they really do help. I’m looking into going back but need to reduce the pain first, if that makes sense at all 😊

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hiya, for me a combination of medication and non-pharmaceutical pain management works

Medication doesn't help everyone, and it can be trial and error to find something that works for you. Medication doesn't take all my pain away but it does help keep it at a manageable level that allows me to function

I also use Cbd as an oil and a tea; pacing, exercise /activity, mindfulness and meditation, complementary therapies such as massage, reiki etc, aromatherapy creams and rubs, heat, distraction techniques and more.

Some days one thing helps more than another.... Other days it feels like nothing works xxx

Zee1973 profile image
Zee1973 in reply toHazel_Angelstar

Thank you, its just hard to learn what works for you isn’t it ? And I think that after struggling for so many years I was expecting a quick fix with a diagnosis!

Sherpa59 profile image
Sherpa59

I gave up on amitriptyline for the same reasons. Now use Boswellia - one tablet a day plus cream for painful joints or muscles. Buy on Amazon.

Zee1973 profile image
Zee1973 in reply toSherpa59

Thank you, never heard of Boswellia, will have a look 😊

Cat00 profile image
Cat00

I take take Amitrityline at 8.30pm it doesn't help the pain but I wouldn't sleep without it. I found none of the pain meds work on me so I use hot water bottles and intense exercise preferably everyday helps me.

Jacjai profile image
Jacjai

Hi... I've tried pregabalin, Amitriptyline, duloxetine and unfortunately I had numerous side effects from taking them..

Dry eyes, restless legs, night sweats, memory fog, fatigue..couldn't deal with it anymore.

I take tramadol SR 100mg morning and 100mg before bed, it a slow release form of tramadol it lasts 12 hours up to 24 hours in your system, it works for me and the bonus is it gives out this extra energy and I feel like my old self again..all the best to you on finding something wil suit you x

Rita1404 profile image
Rita1404

Ask for noratripline I can't spell but it's a cousin of Amitriptyline but not as sedative or ask for lower dose of AmtriplineUnfortunately you need to work out what you need as what works for someone might not for someone else

It takes time but don't give up you will get a result

Midori profile image
Midori

In my experience, getting a referral to a Pain Clinic is like finding Rocking horse manure; I was referred 5 or 6 years ago and heard nothing back despite asking to be re-reffered.

I have heard that different clinics work in different ways too, so, as broad as it is long, I guess. Hope you get an appointment.

Beckster22 profile image
Beckster22

Hi Zee

I am on amitriptyline too as well as other meds (meloxicam) and was told to take it 2 hours before bed. Mind you, I can’t stay awake past 9pm anyway so that’s fine by me. It did make me very groggy at first but I found after a couple of months I came out the other side of it and felt much brighter. Also I recently got my hubby some lavender pillow spray as he wasn’t sleeping well. Blimey, what a difference. After he’s sprayed 3 sprays onto his pillow and I’ve taken a few deep breaths, I’m out like a light. I haven’t slept so well in ages and feel very on the ball!

As others have said exercise and pacing will help. I’ve also gone part time too but I realise not everyone can.

Good luck!

Zee1973 profile image
Zee1973 in reply toBeckster22

Thank you ! I will take what everyone said and try and see what works ... find hard though, but it’s just the beginning of the journey for me ! My Gp sent me to physiotherapy today... fingers crossed it will help !

Mac16 profile image
Mac16 in reply toZee1973

Wishing you the best of luck on your journey and I hope the physio helps you 🤞Maria

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