End of Line? : Hello all, I have just joined... - Pain Concern

Pain Concern

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End of Line?

mgerry profile image
22 Replies

Hello all, I have just joined this group. I have had ms for 20 plus years and pain has been a significant symptom over that time. I have tried just about every drug recommended without great success and am now on high dose morphine. The local pain management clinic has run out of ideas (other than growing cannabis! ) where do I turn next? Is it worth trying one of the private companies that run pain management programmes in the states and if so how do I find a good One? Any ideas would be very welcome.

Thanks M

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mgerry profile image
mgerry
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22 Replies

Can't be of any help due to no knowledge/experience, sorry

Just sending Love

Mary

Wales, UK

Xxx

Tdbrown_1 profile image
Tdbrown_1 in reply to Mary-intussuception

Pain is horrible and unless you have it it's difficult to understand it. You feel trapped and hopeless. There are other combinations of opiods they can use. But be careful of dependency. You will have withdrawal and the pain. With yoga I have only one tylenol codeine med. No it does not work as well and I often want to chew nails to divert the pain. That does not work! You may try a lower dose or an everyother day if you have a 2nd med. Yoga helps I will be lovely at 60 in a few years! Try to wean your body by alternating doses. All the best!

Amkoffee profile image
Amkoffee in reply to Tdbrown_1

If you decide you want to wean yourself off of the opiates do not do it without the doctors knowing that you're doing that. Because your doctor will probably want to be in charge of your tapering frequency.

mgerry profile image
mgerry in reply to Amkoffee

Thanks for the advice, I was on a drug called Duloxatine which it seems damaged my heart. In a fit of panic my GP took me off this cold turkey which was a mistake as it caused me to become suicidal, apparently a known side effect of stopping it dead. Anyway that was 10 months ago and I am, sort of recovered from the experiance although it did little to increase my confidence in the medical profession. The thing is, I am not bothered about comming off morphine, but it just does not Work!

But thanks for the other advice, I will look into it.

Cheers

Amkoffee profile image
Amkoffee in reply to mgerry

Please don't judge the medical profession based on one lousy doctor. Lousy and dangerous.

mgerry profile image
mgerry in reply to Amkoffee

Your quite right, I should not make such a judgement!

lowlife profile image
lowlife

Ok so the medical profession says nothing more can be done. If that was me I'd definitely be on the good old cannabis for pain relief and yet I'm one of those people that hate taking medication. Why suffer when you don't need too. What have you got to lose. Look up CBD oil to see if you think it may help. I don't have MS myself but know people that have and cannabis works well for them x

Rosepetal60 profile image
Rosepetal60

I'm wondering if Traditional style Chinese Acupuncture may be of help to you. I'm talking Traditional style here not the other variety.

Tdbrown_1 profile image
Tdbrown_1 in reply to Rosepetal60

That's expensive and generally not covered via insurance. But ppl say it helps. Somehow I see myself with my own needles. I want to block pain when it starts otherwise very little helps! If it's in your budget try it!

Rosepetal60 profile image
Rosepetal60 in reply to Tdbrown_1

If one lives near a college or uni that has students training in this subject in can be a lot cheaper to go there.

mgerry profile image
mgerry

Thanks folks pain or crime, if only I was 18 again, I knew all the answers then, but still interested if anyone has a way of telling the good pain clinics from the bad? Ten years ago I was referred to Bath pain programme, it was the "gold standard" but to be honest it was an embarrassment to use an old saying just froth and bubbles. Perhaps we should be demanding our professionalsite to admit that medical science has its limits. Also we should encourage the medics to experiance some of the side effects just so they can understand living with them is more than just "side effects".

Well that's my rant over for the evening, my excuse no sleep for 40 hours, but apologies Anyway!

Hi I have heard others talk about a good fb site for pain relief from cannabis so it might be worth having a look at it. I couldn't imagine being in that much pain and I hope you find some answers soon. Take care. xx

mgerry profile image
mgerry

Thanks everyone for your kind thoughts and advice. I thought I was the only person in the world to have chronic pain, but it seems Not!

But I bet my pain is the worse, at least it feels like that at 4 am

Cheers all

Curlygirl54 profile image
Curlygirl54

Are you Uk or USA?

Whichever, I recommend the neuroplastix.com web site and look for the workbook on that site. Has helped me tremendously

Good luck

Shirley

mgerry profile image
mgerry in reply to Curlygirl54

Thanks I will look it up. Oh yes, I am in the UK. Stay safe from the weather, North Korea and Mr Trump

Amkoffee profile image
Amkoffee

There is a drug called ketamine that is actually an elephant tranquilizer. They have begun using that on pain patients who have extreme pain. Of course it's very much lower dose than they would use on an elephant but it's administered by injection so the patient would go to the doctor's office weekly I think and then get an injection of this drug. However you would not fare well by coming to the states to try to get better control of your pain. We are currently in a opiate crises. Our government is trying to keep chronic pain patients from having their opiates so doctors are being arrested for prescribing them and going to jail and because of that doctors are starting to drop patients and not prescribed anymore. I don't know if ketamine is legal in your country or not. But you could ask your doctor about it.

mgerry profile image
mgerry

Hi, thanks for your thoughts on ketomine we know it here as a horse traqualizer, but perhaps we just have very hyper Horses? I was given it Durrington a stay in a hospice, but unfortunately it caused me to have a psychotic episode so was discovered continued. Shocked to hear about the opioid situation in the states, I thought the experts on medicine was doctors and not politicians, you are lucky as you must have very wise politicians in the US!

Appreciate you taking the time to write, cheers

mgerry profile image
mgerry

Hello all, a few weeks back I asked what happens when all the opioid drugs have been used and are no longer effective. People have been both helpful and kind in their responses, so I would like to ask another question please ( I was also greedy as a Child! ) .

OK, are all the opioid drugs basically the Same? I have been on Fentynal patcheses as well as oramorph, zomorph, and lots and lots of other 'morphs" and it seems the only difference are the side effects, is this just the typical result of having MS for 20 plus years so the nerves which cause the pain are immune from all of them? If this is the case, then it seems pretty pointless to carry on the merry go round of yet another different version. I know people get help from a range of other things from Street drugs to prayer, so should I be looking at going outside conventional medicine? I feel I am near the end of this particular road. As always, many thanks for any thoughts you may have on the issue.

Jenles profile image
Jenles

I don't have an actual answer for you, but I have also been taking Zomorph and oral morphine for a long time, as well as various other drugs. Given the amount of pain I am in I suspect that I, too, am now too used to them for them to be effective. I don't have a solution, though. I kind of wish cannabis was legal (I believe in your case it may be - with the right dr).

Since I am a Christian I do pray and have often had others pray for me but I don't see it as a replacement for conventional medicine. Although, of course, I would stop taking meds if the pain were to go away! But I wouldn't stop praying!!

The problem with chronic pain is that there isn't really a solution, is there? The best option on offer, humanly speaking, is to try to cope with it with whatever help is available (or not😏).

Amandaannsmith profile image
Amandaannsmith

I am a cna. I stay with a lady that also has ms and my mother in law also has ms. They have a new medication out now that is suppose to tremendously help with alot of ms symtoms. I cannot remember the name, but talk to your doctor about it. I hate to see someone have to go to pain management due to the high addiction rate of pain meds. Im sorry your having to go through this and I pray that you have someone to help you with physical and mental debilitation of the ms..

lynnedotgilbert profile image
lynnedotgilbert

Hi there, so sorry to hear about what you are going through.... I also suffer with chronic pain and also take the usual opiate based meds. My sister is a sufferer too but unfortunately hers is terminal. She gets morphine in an injection... her husband was shown how to administer it when the pain got too much for her, she swears by this as the zomorph & oramorph had no effect for her. I have also been told & have looked it up that a Doctor can actually prescribe Cannabis to certain people who suffer with chronic pain. There was three candidates who he's able to subscribe this to. Cancer, Parkinsons, and another which I think was MS but am not 100% sure. There is no harm in people who suffer with any of these conditions enquiring about it with their GP. I know that I do not fall into any of these categories so am unable to get it. My brother in-law has told me to inquire about the morphine injections as they are a lot better than the other opiates. Best of luck to everyone, and hope you can get through the days with little or no pain. Lynne x

mgerry profile image
mgerry in reply to lynnedotgilbert

Thanks for your kind wishes, take care

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