Pain management

[Lynngee]

What can be done if painkillers no longer work. I’ve had patches but they caused an allergic reaction. I’m trying CBD but that doesn’t seem to work either?

[RayB]

You could always ask you dr about LDN,, but go well prepaired with all the infromation as it's off use,, it works for some!

Infusions but they are not without their problems and are of questionable safety,, the other part is getting them. Not a problem if you have the financial capacity.

They don't work well for everyone.

Other than that I can't think of anything that dose not involve breaking the present statutes and acts,, the ones created by little men in grey suits in a place called parliament.

[FRreedman]

On the grounds that something must work, I would ask your GP for a referral to an anaesthetist, who specializes in pain management. Most JUS hospitals have at least one on their staff list.

[Reykua]

Hmmmm. I sooooo hear you.

I find that everything has it's drawbacks and a great deal is down to our own expectations.

As you know, all pain meds work in different ways for different people and have side effects that can or cannot be well tolerated.

With this condition, it may be that you may have to settle for something that 'just takes the edge off' without getting rid of the pain completely.

For me, the only thing that actually gave me complete relief from pain was Tramadol but it also knocked me out and turned me into a zombie - not to mention all the other side effects. I also found Naproxen good but it eventually led to me developing melena. Co-codamol and all the others have not really touched the sides of the pain.

Using creams and gels have - Ibuleve, Capsaicin etc. have helped but the application and the smells have been a little challenging and with one, the resultant rash was a little alarming. Unlike many, I find massages painful. Go figure!

Was referred back to Pain Management consultant and I'm currently on morphine patches and well..... it does take the edge off but....I'm still being woken from sleep by pain.

I've now realised that the only way I'm going to be able to cope going forward is to lower my expectations and develop a more 'mindful' approach to the pain - fighting it has actually made me more anxious, depressed and irritable.

I made a note of all the things that help - warm patches, warm (not hot) weather, hydrotherapy, steam baths, distraction, singing and soothing music so the challenge for me in 2020 is how to combine all these things in one place.

My friend who also does Tai Chi (and in remission from cancer) says she 'welcomes pain' and to her, 'Pain = Alive'. I'm struggling to develop the same mindset but did find myself almost 'welcoming the pain' and feeling much better about it the other day when I struggled to get out of bed first thing in the morning after a difficult night.

All the best going forward. Hope you find something that works for You.

[Lynngee in reply to Reykua]

Thank you it makes a difference knowing I’m not on my own. X

[VintageMustard]

What painkillers do you take? I was prescribed Tapentadol/Palexia in both slow release and non SR versions which have worked well for me. I do not take them every day though, but they help greatly when I have a flare, or I take when I know I have to go somewhere and need to be as pain free as possible.

[Lynngee in reply to VintageMustard]

I take tramadol I have inflamatatory osteo.arthritis as well as fibromyalgia.

I have asked to be referred to the pain clinic but gp seems reluctant. I used to have injections in my spine for chronic pain but had to stop due to an adverse reaction .

[Badbessie]

I think you need to look at all aspects of treatment and take an holistic view. Medications do have a role but no medication will leave you pain free. Would your pain consultant put you on a pain management programme? I am coming to the end of one and I am finding the pacing and goal setting they teach very useful. They also taught some very useful stretching and strengthening exercises. I use the word exercises but 10 years ago I would not have called them that. More a very gentle warm up. It is not a cure nor does it give complete answers but I believe it will prevent some flairs and perhaps help to mitigate other flairs. I read a statement that motion is lotion on this site and in my ways it is apt. If you do not use muscles you lose strength and that in itself can cause further pain. Just learning various breathing and relaxation exercises as helped me. I am still in pain but the way I think about it is at least I can fight back a little now to help myself. Lastly it is not all mindfulness. My wife did the programme last year, I am just finishing and we both have had our pain medications increased.

[Lynngee in reply to Badbessie]

Thanks knowing others are in the same boat makes you realise you are not the only one.

[Hidden]

when all failed for me I asked my rheumatologist to allow me to have steroid injections 6 monthly into my bum, I learned about this from a hydro session from others who had gone down this road..The best one is Kenalog, you might need some pain relief with but knowing that after 6 months you can have another one does help you to soldier on.