Pain relief - what's best?

[TK-67]

Mum's developed severe pain this week - muscle spasms and we think into her joints, she's got a high pain threshold and is wincing and in tears with it. She left hospital 2 months ago after her hip surgery with a codeine prescription, until this week it's barely been touched. Now the nursing home team are using it, she's very different to how she was then, far frailer and on a different prescription for other drugs. After 5 days, she's confused - we believe constipated (we all know what codeine does to a healthy person's system) and dehydrated. I was far from happy with this yesterday and asked for the GP to be called and for a proper (and appropriate) pain management plan - she's been given the codeine only when she's already in pain and it's just awful. Has anyone got any advice, mum's now very poorly and we just want her comfortable. The GP was unable to change much last night (I hate a Friday crisis) , the home is monitoring her pain levels and when and how it happens and the GP has prescribed additional laxatives and is meeting us on Monday to discuss. It just didn't feel right?

[Yanno]

I think bowel management is so difficult with MSA anyway let alone if one is taking codeine. We have managed through the help of our continence nurse with mix of three things - Laxido for softness, Senakot for urgency and a new product called MyFiber that produces bulk (fibre for us Brits). Its taken a long time to try and get things balanced and we have measured the Laxido by the teaspoon and used liquid Senakot measured by the ml. Do you have a local continence nurse who could give advice?

On the pain side, I'm sorry I've got nothing to add. Have you spoken to a MSA Trust nurse?

I really hope your mum is much better soon. Take care, Ian

[TK-67 in reply to Yanno]

Thanks Ian - we’ll be in touch with everyone on Monday to see if we can get this a little more controlled

[FredaE]

May be what is known as neurogenic pain which is not controlled by normal painkillers and needs specialist medication. Never take no for an answer. If someone doesn't know how to cope with it they can find out.

[TK-67 in reply to FredaE]

thank you - agree!

[Hidden]

Trudy

We are in a very similar situation. My mum was admitted to hospital with her neck pain for urgent MRI (she has a cancer history so they wanted to rule out metastatic bone disease). It was just the MSA though, so the consultant prescribed Gabapentin. This is a neurology drug that blocks neurogenic pain. She also has a prescription for Oromorph as needed and a Butec transdermal patch. This means we can reduce or cut out the codeine to reduce the bowel problems.

We are 2 weeks into the new drugs and at first the side effects were awful, she was confused and drowsy and it made her slurred speech much worse. It’s has also made the realistic dreams/nightmares/hallucinations worse. But 2 weeks in, the side effects are less and she is not in so much pain.

The consultant thinks that her left arm which is very rigid and immobile is the cause of the neck pain and is planning to try Botox injections into the muscles of the arm to try to relax it.

I had a lot of trouble getting the nursing home to take her pain seriously. They were trying to jolly her along and get her out of bed and into a chair and to activities etc when she was calling out in pain! The GP that visits prescribed codeine (not good with bowel issues), but luckily we had a consultant appointment and I managed to get her there (was touch and go) and that got her the right drugs.

I don’t know how long this “new normal” will last but her world has definitely shrunk.

Hope you can get your Mum more comfortable soon.

[TK-67 in reply to Hidden]

Thank you - the pain at this level is new and intermittent, I just don't want her given something that just causes something else that makes her very distressed, we've been there with the dreams/nightmares/hallucinations and as she's still a little mobile I don't want her to go there as it's going to be extremely difficult to manage! This horrible disease just makes even the simplest decisions so difficult, she has so little quality of life now.

[TK-67 in reply to Hidden]

as an aside, mum had botox to help her ante collis over a year ago, it didn't have much effect, but at least she thought something was being done to try to help. So wish homes were better....why is just so difficult!

[Hidden in reply to TK-67]

Thanks for this it’s good to know what to expect, I won’t get my hopes up for Botox to be a miracle then!!! I don’t think there are any miracles for MSA.

[TK-67 in reply to Hidden]

sadly no...breaks my heart on a daily basis, thanks so much for your replies, helps so much!

[Hidden in reply to TK-67]

Yes we seem to be in the same situation and it is a help to know we are not going through this alone. Wonder if we are geographically near. I’m in Reading area.

[TK-67 in reply to Hidden]

I'm in north wiltshire....

[Daleston10]

I second what emmadoc has said we had exactly the same problem and used the same meds the gabapenting made her sleep a lot that was the only side affecte

[TK-67 in reply to Daleston10]

thank you - she's already sleeping a lot....

[Hidden]

Sorry to hear it, its so hard to see someone in pain like that. Frustrating when carers aren't getting it.

Dad's pain isn't as bad, tends to be hips/thighs, forearm. Which I think may be more linked to immobility. We're OK with ibuprofen gel/paracetamol for now. GP protocol is normally that the next step up would be codeine, but have agreed to jump a step to morphine patches if it gets worse. I said to them oral cocodamol would likely make him too drowsy to function at all. We've had some success with black pepper and lavender massage oil, and microwave heatable wheat bags. Not sure if the home is ok with these. Good luck! Kx

[Hidden in reply to Hidden]

Second the microwave wheat bag thing. This has given my Mum some comfort.

[TK-67 in reply to Hidden]

very much doubt we'd be allowed that! We've found rubbing helps guess that is a warming action!

[TK-67 in reply to Hidden]

Hi Kay - I did speak to our GP so a little happier we have a plan now - one thing she did mention was not to use anti inflammatories for pain relief as this can raise BP - I don't know if your dad has BP problems but I thought I ought to flag? Mum's is all over the place and she's already on 2 different drug to try to regulate it.

[Hidden in reply to TK-67]

Thanks for thinking of us. I hope your Mum is doing OK. Dad's blood pressure has been on the low side, so I think thats why the docs are OK with it. Kx

[Hellebelle]

Hi, you have had some excellent advice from others. Dad had butec patches and oromorph which made him very sleepy but took away pain.

There are specialist pain management teams and you could ask for a referral.

Dad had such problems with constipation and we kept well away from anything such as codeine that would exacerbate this.

Good luck, I hope you get help.

Helen x

[TK-67 in reply to Hellebelle]

I managed to speak to the GP yesterday, mum's pain has been far less this week but as soon as it gets consistent again, we'll assess which side effect is preferable at that point in time for her - drowy vs possible constipation etc....felt she did understand our concerns.