Pain relief

[Greens]

Hi all Mum is starting to complain of pain more regularly and we have doctor coming to reassess meds care home suggest patches wondered what people think and what meds are working?

[kenh1]

I was talking to one of the research nurses at the hospital and she was saying how research is revealing that patches work far better than oral medication because the medication does not have to go through the liver to get into the blood stream. As far as for pain relief we haven't had to use anything stronger than paracetamol in the six years my wife has had CBD.

[dollydott]

Sorry your mum is feeling pain.

The only time mum has experienced pain since being diagnosed with CBD was when her right arm and hand became clenched this was resolved with botox.

She is however becoming more rigid especially first thing on a morning and last week I asked the consultant about baclofen but he was reluctant to prescribe it reeling off a list of symptoms to convince me it probably wasn't the best for mum. She can't tell me anymore if she is in pain I have to go by facial expression so it's good that your mum can still tell you.

I have also been told like Ken that patches are the best. Someone on here put that they use voltarol (sorry cant remember who or which post) I prefer this for myself when I have shoulder pain it's easy to rub in and works quicker than pain relief tablets .

Hope you find something that works for your mum. Please let us know if you do.

Love Lynda x

[kenh1 in reply to dollydott]

Hi Linda.I think it was me who mentioned using Voltarol to massage my wife's hand when it was clenched and she was in pain. We were never offered Botox. She is on Baclofen but I only give her a small dose morning and evening.

She is currently pain free as like you I go by facial expression and intuition. Keep up the good work love Ken & Doreen.

[Mcates]

Hi. I’m a nurse. Patches are great as the pain relief does not wear off. With oral meds you get peaks and troughs. You give medication, it peaks about an hour later then it starts to wear off and you get the trough. Patch is steady release all the time. The only thing with patches is they are all opioid based. Your mum may get side effects to start with but they are well worth persevering with if that does happen. Also they should start low and rot rate up as required. X

[LuisRodicioRodicio]

Hi Greens!

All PSP patients seem to have similar symptoms but their appearance, intensity and sequence as well as the answer to medicines seems to be specific to each patient.

These are our experiences:

•Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opioids. Currently when an episode of pain arises we use progressively Paracetamol (liquid), alternating Nolotil capsules / paracetamol reducing Nolotil as get better, Nolotil in capsules, and if the pain is acute Nolotil in glass ampoules orally. All these treatments under strict medical supervision. (Nolotil is “magnesic metamizol”).

I know "magnesic metamizol" (Nolotil) is prohibited in some countries and that, curiously, has more side effects for people living north of the 50th parallel.

Below the 50th parallel it seems that it is used without big problems, always under medical supervision.

Hug and luck.

Luis

[Spiralsparkle]

Mum wasn't able to tolerate meds well even before CBD.

The hospice advised a low dose patch last summer as it was clear she was uncomfortable but wouldn't admit to it all the time and also was refusing the paracetamol as her behaviour was changing .

It was a tough decision as I know she really hates taking drugs and has always been a natural approach to health. Comfort outweighed in the end and after lots of discussions she agreed.

As it was the smallest dose available in the patch she didn't appear to suffer too greatly with side effects,well they were less than all other meds that had been tried like Baclofen and all her epilepsy drugs .

Also as a patch it doesn't have to be processed through the digestion system. Mum has suffered for decades with digestive issues so we were never really sure how much of the paracetamol she was absorbing.

As everyone is unique it is trial and see really. If it doesn't help or makes life worse with the side effects you stop it.

[Greens in reply to Spiralsparkle]

Thank you it is definitely trial n error what works for one doesn’t for another

[DenB]

My husband seems to have pain at times but I never know exactly where he has the pain. He can't tell me. A doctor prescribed morphine up to 4 times a day but after only a couple or more doses, not even half the dose that was prescribed, over 2-3 days, I stopped giving him any more morphine as he looked totally comatosed! He actually looked as though he was dying, which he didn't before taking the morphine.

I was totally amazed that no one rang me to find out how he was getting on on the morphine and I am sure he would have just closed down, if I had given him the full dose of 4 times a day!

I came to the conclusion that if he was in a nursing home and given the morphine, he wouldn't still be with me now!

I have reverted to give him good old paracetamol most days, which seems to help!

Dx

[Greens in reply to DenB]

Yes understand your stance our doctor was quite good didn’t want to give pain relief that was more addictive like patches etc so we have upped co coldomol to 4 times a day if needed