I hate being in pain!!

[Likaloha]

Why does the government have such a say in my medical decisions? I cannot seem to find any pain doctor that is not intimidated by the DEA, etc. I am tired of being seen as just another junkie/addict, etc. My pain is very, very real, and it just continues to get worse as I grow older. My arthritis will get more painful as I get older, and my polymyalgia rheumatica is getting so that I can hardly sit as my hips are painful and my shoulders too! I cannot even find a rheumatologist who will prescribe prednisone for my polymyalgia rheumatica(PMR)! I just saw a pain management doc yesterday who refused to listen, talked down to me and refused to offer me any help except PT and gabapentin (which is for nerve pain, which I do not have) I had a wonderful rheumy/pain doc who got driven away by the government...who by the way had little to no experience with patients....especially one like my with a very complicated history.
sorry about the rant! I am very scared to spend the rest of my life with pain that continues to worsen and fatigue that saps all my energy!

 

[nerd]

I think we can feel your struggle with the medical system. There's nothing to feel sorry about. I'm sure there is a huge gray number of people who struggle so much that they can't even speak out, or who don't understand why the system doesn't work in their case. These issues are systemic. You are no exception. I hope COVID-19 long-haulers will change the public perception eventually. Because they are still younger and more connected than an average Rheumatic patient.

I'm in the same shoes. I want to take responsibility for my own health, but the medical system retains this human right to decide for myself what risks to take and how to treat myself. But hey, I can still induce alcohol or smoke myself to death. In Portugal, you can buy all kinds of recreational drugs. But not for medical purposes!

 

[Likaloha]

I think we can feel your struggle with the medical system. There's nothing to feel sorry about. I'm sure there is a huge gray number of people who struggle so much that they can't even speak out, or who don't understand why the system doesn't work in their case. These issues are systemic. You are no exception. I hope COVID-19 long-haulers will change the public perception eventually. Because they are still younger and more connected than an average Rheumatic patient.

I'm in the same shoes. I want to take responsibility for my own health, but the medical system retains this human right to decide for myself what risks to take and how to treat myself. But hey, I can still induce alcohol or smoke myself to death. In Portugal, you can buy all kinds of recreational drugs. But not for medical purposes!

Sorry to hear you are in the same boat as me! I hate that the government thinks it can rule my health care.... And it does. I have spoken to many people in government, DEA, etc and sent many letters to all politicians in my state. I even wrote, with my husband's help an essay called " the other opioid crisis" which is told from the point of view of this pain patient.
I am 59, and have been increasingly more disabled by my CFS/ME, Fibromyalgia, and many other problems. I hate having so little control over my own life!
take good care and thanks for the response!

 

[YippeeKi YOW !!]

sorry about the rant! I am very scared to spend the rest of my life with pain that continues to worsen and fatigue that saps all my energy!

It's a very worthy rant, and one I'm guessing is shared by a lot of members here, who are cheering it and applauding loudly.

The cowardice of those same Drs, who pushed every kind of anti-d, anti-anxiety, anti-psychotic, along with beta blockers and gabapentin and little armies of benzos, and anything else they could think of, at patients who were going to not only get NO benefit from them since any potentital treatments for their illness lay elsewhere, but who could be substantially additionally damaged by them, now denying any kind of ameliatory treatment to them makes me so angry, so disgusted, and so overwhelmed with helpless rage that I think my head's going to burst into flames and explode.

I know this sounds like applying a lemonade compress to a gaping wound, but I've had really good results with Aleve, when nothing else touched the pain, even minimally.

We're all different , and some people think Tylenol, the plain kind, not the Tylenol and codeine, is great, but it's never done squat for me, ditto all the others. But Aleve, even in half doses (which is how I trial everything, sometimes even lower), is almost miraculous.

I'm deeply saddened by the sorry, cowardly, sniveling state of some, or possibly much, of our medical system. I wish things were different.

There's also Kratom, which I know little about, but have read and heard that it's a valuable pain-killer, and googling a little information about it might be useful to you. It's legal and available without a prescription, but do a search on the suppliers and safety issues around kratom

 

[Likaloha]

It's a very worthy rant, and one I'm guessing is shared by a lot of members here, who are cheering it and applauding loudly.

The cowardice of those same Drs, who pushed every kind of anti-d, anti-anxiety, anti-psychotic, along with beta blockers and gabapentin and little armies of benzos, and anything else they could think of, at patients who were going to not only get NO benefit from them since any potentital treatments for their illness lay elsewhere, but who could be substantially additionally damaged by them, now denying any kind of ameliatory treatment to them makes me so angry, so disgusted, and so overwhelmed with helpless rage that I think my head's going to burst into flames and explode.

I know this sounds like applying a lemonade compress to a gaping wound, but I've had really good results with Aleve, when nothing else touched the pain, even minimally.

We're all different , and some people think Tylenol, the plain kind, not the Tylenol and codeine, is great, but it's never done squat for me, ditto all the others. But Aleve, even in half doses (which is how I trial everything, sometimes even lower), is almost miraculous.

I'm deeply saddened by the sorry, cowardly, sniveling state of some, or possibly much, of our medical system. I wish things were different.

There's also Kratom, which I know little about, but have read and heard that it's a valuable pain-killer, and googling a little information about it might be useful to you. It's legal and available without a prescription, but do a search on the suppliers and safety issues around kratom

Thanks!! Will try Aleve because the gabapentin and antidepressants I refuse to take are useless. One rheumatologist out me on cymbalta, which I tried years ago, and this time after 3 days I was zombie-like. The doctors reply was to keep trying g for two weeks and if it did not help he would try Zoloft or prozac....Thanks for nothing!! My brother has mentioned kratom, and I have looked into it some but don't have a reliable doctor to ask for an opinion.
for supposedly living in the greatest country in the world our health care system really is not for many like us!

 

[YippeeKi YOW !!]

I have looked into it some but don't have a reliable doctor to ask for an opinion.

I think on kratom you're going to have to do the footwork yourself and come up with your own opinion. Anything that isnt produced y BigPharma gets pretty short shrift from the medical community. Naturopaths are getting to be almost as bad, but you might find someone in that area who'd know more.

I only know that it has opioid and stimulant effects, that the powers that be have been trying to make it illegal forever (which tells me, perverse creature that I am, that it's almost certainly effective, or they wouldnt be gunning for it) with no success.

Longecity is a forum that delves into things like kratom, things that are somewhat-to-totally off the radar, you might try googling "Kratom, Longecity" and see what you can find in the threads there. Quite a lot of them are open to non-members, especially on things like kratom and nootropics.

Or just google "Kratom" and read a bit before going to Longecity. They can get pretty nerdy and sometimes hard to follow over there.

I'm guessing that there may be members here who know more about it than I do. I'll open a thread and post a link for you.

But you are going to have to make decisions somewhat on your own. Quite a few of us here on PR have had to do that in the absence of guidance, input, or even vague interest from a trusted medical source.

There's an oxymoron for 'ya.

for supposedly living in the greatest country in the world our health care system really is not for many like us!

I hear 'ya. And I agree. And if we tip over into semi-socialized, one-payer, medicine in this country, we'll all be looking back on this as " .... the good old days ..."

Chin up. There are options, just keep searching and asking .... .....

I'll be back in a bit with a link to the kratom thread I'm going to open for you, but right now I have to put something in my tum. Gettng really dizzy.

 

[Booble]

ADVIL. Not only takes away pain but also, for some reason, for many people it takes away anxiety and improves ability to live normal life as well. Could be because anxiety is tied in with having pain or could be because it's also reducing inflammation in the brain. There's no medical path for it but anecdotally seems to be the case.

 

[Likaloha]

Thanks for all help! Will check out website and kratom! Lisa

 

[Judee]

Found this a while back. Not sure if it would help especially with a high level of pain but something else to look into. https://www.practicalpainmanagement...eutical/nutritional-supplements-pain-practice

 

[Rufous McKinney]

I am 59, and have been increasingly more disabled by my CFS/ME, Fibromyalgia, and many other problems. I hate having so little control over my own life!

Have you tried LDN? Its not a pain killer..but involved in the opioid receptors and it helps....some of us.

Low dose nalthrexone?

 

[nerd]

I think I've read a study that identified how opioids, in particular, could suppress some suspected pathology of CFS/ME or a CFS/ME-related co-morbidity, but I can't remember which. But I think I remember that opioids could show benefit beyond their pain management.

 

[YippeeKi YOW !!]

@Likaloha
I tagged you into the thread I opened, as promised, re: Kratom, but in case you missed it, here's a link:

Can Anyone Share Some Wisdom on Kratom for Chronic Pain? Asking For A Friend. No, Really ...
https://forums.phoenixrising.me/thr...ng-for-a-friend-no-really.83373/#post-2330438

 

[Likaloha]

Found this a while back. Not sure if it would help especially with a high level of pain but something else to look into. https://www.practicalpainmanagement...eutical/nutritional-supplements-pain-practice

Thanks! Will read and check it out. It is much appreciated!!!Lisa

 

[Likaloha]

Have you tried LDN? Its not a pain killer..but involved in the opioid receptors and it helps....some of us.

Low dose nalthrexone?

I have heard lots about low dose nalthrexone, but am not knowledgeable. Is it a prescription? I will try to research it as soon as I am mentally able. Thanks for the reply!
everyone here is so helpful and it is much appreciated! I am really burnt out trying to figure things out by myself! Lisa

 

[YippeeKi YOW !!]

I have heard lots about low dose nalthrexone, but am not knowledgeable. Is it a prescription?

I've never tried LDN. I have a peculiar aversion to prescription meds that mess with sensitive systems, like our brains and CNS, ENS, and sympathetic and parasympathetic nervous systems, that are only minimally understood by the people messing with them.

But I do know that some members of PR seem to have had decent-to-good results from LDN, tho I haven seen any recent follow-up on that.

Naltrexone was originally developed as an adjunct medication for treating opioid addictions, by blocking the effects of opioids (altho that can apparently be overcome by taking huge doses of opioids), as well as doing the same for alcohol addiction. Then its use was expanded to be an adjunct for cancer treatment, which some science sources have called quack medicine. Its use has been upgraded to include things like weight loss, anxiety, pain management, addictions, fibromyalgia, and now ME/CFS.

So pretty much a ..... miracle drug? A drug frantically searching for a home? A placebo for things Drs don't know what else to do about?

It's a puzzlement. I have no idea what to think, but again, I tend to avoid drugs that mess with things I'd rather not be messed with, any more than nature already has what with EBV and ME, so I may not be the best source.

Just remember when you read up on LDN in these threads that we're all different, and what works for one of us, may be anathema to others ....

Not much help. Apologies ....

EDIT ..... and anyone who knows me by now knows tht it's more typos. I dont know why I dnt just give up. And damned if there aren't 3 more in this sentence, whic I'll just leave to thir own devices. Make that 5. Bah.

 

[Booble]

Just remember when you read up on LDN in these threads that we're all different, and what works for one of us, may be anathema to others ....

Giving you bonus points, Yippee, for using one of my favorite words: anathema.

 

[YippeeKi YOW !!]

Giving you bonus points, Yippee, for using one of my favorite words: anathema.

Hey, thanks !!!

Uhhhhhh.... do those possibly come in dark chocolate ????

 

[Likaloha]

I've never tried LDN. I have a peculiar aversion to prescription meds that mess with sensitive systems, like our brains and CNS, ENS, and sympathetic and parasympathetic nervous systems, that are only minimally understood by the people messing with them.

But I do know that some members of PR seem to have had decent-to-good results from LDN, tho I haven seen any recent follow-up on that.

Naltrexone was originally developed as an adjunct medication for treating opioid addictions, by blocking the effects of opioids (altho that can apparently be overcome by taking huge doses of opioids), as well as doing the same for alcohol addiction. Then its use was expanded to be an adjunct for cancer treatment, which some science sources have called quack medicine. Its use has been upgraded to include things like weight loss, anxiety, pain management, addictions, fibromyalgia, and now ME/CFS.

So pretty much a ..... miracle drug? A drug frantically searching for a home? A placebo for things Drs dont know what else to do about?

It's puzzlement. I hvae no idea what to think, but again, I tend to avoid drugs that mess with things I'd rather not be messed with, any more than nature already has what with EBV and ME, so I may not be the best source.

Just remember when you read up on LDN in these threads that we're all different, and what works for one of us, may be anathema to others ....

Not much help. Apologies ....

Thanks for the rep!y! I too am wary of meds that mess with my unstable equilibrium! Have had adverse reactions to too many meds with no help from those who prescribed them! Take good care, Lisa

 

[YippeeKi YOW !!]

Thanks for the rep!y! I too am wary of meds that mess with my unstable equilibrium! Have had adverse reactions to too many meds with no help from those who prescribed them! Take good care, Lisa

I;m truly relieved to know that !!! I mean the wariness, not the difficulties that produced it ....

It's amazing how fast they'll prescribe them, and how quickly they'll leave the room whn you ask for help or complain about the side effects.

There are other ways to go at this, with fewer side effects. Do try the Aleve for pain, it's really been incredible for me, and I'm hoping that it will be for you, too. If it isnt, try Advil or any other OTC pain med, until you find one that helps. It's out there, just waiting for you to drop on by .... you take care, too, and dont give up, don;t lose hope ....

 

[Booble]

Hey, thanks !!!

Uhhhhhh.... do those possibly come in dark chocolate ????

As a matter of fact they do. Because dark chocolate ameliorates everything. <------- see what I did there with another fun word?