kapanol

[Ellie]

OK I'll stop worrying I just don't like seeing people in pain on top of dealing with MND!!

Any concerns you have, there's usually someone here who has been through similar and can help you.

hi ellie don't be concerned i think i'm being looked after ok .... as best they can ...... got an appointment at hospital in 2 weeks to have a collar made for me so fingers crossed that will help ....... i've got a bpap but don't use it breathing ok for now ....hope your ok Andrew

[Ellie]

Hi Andrew,

Actually, I’m a tad concerned about the help you’re getting, or not getting, which could make a difference to your quality of life.

Again, I don’t want to come across as preachy, it’s just that I’ve been through neck pain and its associated shoulder pain, so I know the benefits a good collar can bring. A soft foam collar isn’t supportive enough if your neck is anything more than mildly weak. A collar that supports the weight of your head and prevents your neck extending forward is what you need (eg Headmaster, Aspen, Oxford collars, or a good cervical collar) OT or Physio should be involved to help you live your life as pain free as possible. Life with MND is hard enough as it is!!

When you say your breathing is at “35%”, I take it that’s your FVC figure – a test you did by blowing a breath for as long as you could. Are you using a BiPAP (aka non-invasive ventilation) machine for sleeping? If not, were you offered one? Your 35% capacity would indicate you’d benefit from using one.

The use of morphine is common when one has air hunger towards the end, which you don’t have if your “breathing is ok.” Personally, I’d use it with caution for ongoing pain, but that’s up to you and your doctor on a benefit v risk basis, whether or not to take it.

I also have trouble moving food around my mouth as my tongue is useless, but eat a small lunch of finely chopped food as my swallow is still ok. I get the majority of my nutrition and fluids through a feeding tube, as it'd take me at least 12 hours to eat and drink them

I hope you get the care you deserve Andrew.

Ellie.

hi ellie the liquid morphine is called ordine 2 not sure on the strength ,my breathing is ok but tests have it at 35% i was told by my doctor if I have trouble breathing to have some morphine to help me breathe yes i have an ot and physio and speechie my swallow is ok just have trouble moving food around my mouth it's just easier and less tiring and less stressful to have a liquid diet i also take cymbalta which is an anti depressant but supposedly can help with pain been wearing a soft collar from the chemist when i leave the the house it helps but it's not the most comfortable thing to wear especially when it's hot ....... thanks andrew

[Ellie]

I've caught up on your posts Andrew - I've been off the forum for a while. You don't mention your breathing; I presume it's still very good to be taking 2 types of morphine? You didn't say what strength liquid morphine you're on. I mention this, not to be preachy, but because morphine depresses respiratory function.

I don't know anything about your health system - do you have an OT or Physiotherapist to assess you and to provide/recommend a neck brace, seat support and the best bed solution for your specific needs? Or is this done in your MND Clinic? As I said, a lot of our pain can be fixed mechanically with the right equipment, rather than painkillers which doctors are often too quick to prescribe, rather than to address the underlying cause of the pain

I read your swallow isn't good; is a feeding tube something you'd consider?

Ellie.

[Barry52]

Hi Andrew,

Do you wear a neck collar as this may relieve your pain?

Barry

[Barry52]

Hi Andrew,

Do you wear a neck collar as this may relieve your pain?

Barry

ellie thanks for the reply most of my pain is in my neck and shoulders . my neck has got worse over the last 2 months because my muscles have deteriorated a lot. i also take ordine 2 3 times a day 2ml . i've recently bought a latex mattress topper which has helped with the shoulder pain andrew

[Ellie]

Andrew,

Yes, one’s body builds up a tolerance to opioids, so over time, you’ll need more of it. However, increasing the dose from 10mg to 20mg after 3 months should make a positive difference to your pain level. It does seem odd that doubling your dose has made no difference…

Where is your pain and do you know what’s causing it? Often the pain we get from ALS can be treated by making physical changes to our sleeping environment – positioning, mattress, supports etc. I note you take it only at night.

(Note: Any opioid should not be stopped abruptly as there are withdrawal side effects, but reduced gradually as directed by a GP)

Kapanol is not a brand name used in this part of the world, that’s why your search yielded nothing. Its active ingredient is morphine sulfate; try searching for that, or, if you want or feel free to ask more here.

Ellie.

[Andrewoz]

hi just wondering if anyone else has tried kapanol i did a search on here and nothing. I've been taking it for 3 months last thing at night as they make me very drowsy. my dose has just gone up from 10mg to 20mg with no noticeable difference. does your body get used to the morphine so you have to keep taking more
cheers Andrew