Pain isn't an MS symptom?

[palmtree]

I am the type who hates taking pills. BUT when I can’t stand it I do.
I'm a caregiver and my latest client was addicted to pain pills. There’s no doubt she had pain, but once I got her up moving and stretching she started to feel better. It took me a year to ween her off, she, at 75 she was a drug addict. Only because she had a quack who found it easier to write a script instead of helping her.

That is why we now have to suffer, the endless aches and pains that never subside. Not to mention the endless ER Drs who wrote norco, codeine and even morphine (for me personally) for anything I explained to them. I did NOT want them but because of last 25+ years of the easy way out they(dr) bred more and more addicts and and it was an easy way for addicts to get their “fix”. Go to the ER and say my back hurts, say I have a headache and out comes the script pad.

Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
on the flip side, not all Dr are quacks and their hands have been tied due the bad apple. Now it’s too late we are pushing water uphill to get our help.
They (government)are now trying find the middle ground and we are caught in the battle.
im not bashing all docs, just the ones who didn’t see past yesterday.
As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight. I hate not being able to just stand and walk across the floor. I hate the admitting I’m not what I used to be.

I pray someday there be a miracle to end this cycle, but until then, I get up each day a push through because I have it in me (today) to not let this beat me. I’ve always been a fighter and survivor. Now I’ve learned to fight to live the day the best I can. I have learned the difference in surviving and living life, I will live life and keep my attitude that today is a good day, I’m here with ones I love, I’m still mobile just a little slower but maybe it’s time we do slow down and enjoy the good. I’m always “fine” when asked, yeah no. But why bring others down? It’s not going away so why dwell. There may come another day when I blame,hate and cuss......but not today!!!

I am starting to see some light at the end of the tunnel. Yes, it has been the standard of care from neurologists to not use opioids for the neuropathic pain that MS causes. Reasoning: neuropathic pain does not respond to opiates.

But, when I first went to a pain management doctor, he said, “what you have is neuropathic pain. This is the same kind of pain as cancer pain.” Yet society pampers cancer patients and leave people with MS out in the cold.

But the latest developments are interesting. The FDA finally came out with a warning that the war against opioids has had some unintended consequences and warns against overzealous laws to prevent prescriptions.

To follow suit, the CDC has issued a new statement (June 2019) outlining in great detail the benefits of treating long term chronic pain with opiate derived drugs and clarifying their previous misunderstood guidelines. Awareness is shining through. I think MS patients have hope.

[palmtree]

I am the type who hates taking pills. BUT when I can’t stand it I do.
I'm a caregiver and my latest client was addicted to pain pills. There’s no doubt she had pain, but once I got her up moving and stretching she started to feel better. It took me a year to ween her off, she, at 75 she was a drug addict. Only because she had a quack who found it easier to write a script instead of helping her.

That is why we now have to suffer, the endless aches and pains that never subside. Not to mention the endless ER Drs who wrote norco, codeine and even morphine (for me personally) for anything I explained to them. I did NOT want them but because of last 25+ years of the easy way out they(dr) bred more and more addicts and and it was an easy way for addicts to get their “fix”. Go to the ER and say my back hurts, say I have a headache and out comes the script pad.

Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
on the flip side, not all Dr are quacks and their hands have been tied due the bad apple. Now it’s too late we are pushing water uphill to get our help.
They (government)are now trying find the middle ground and we are caught in the battle.
im not bashing all docs, just the ones who didn’t see past yesterday.
As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight. I hate not being able to just stand and walk across the floor. I hate the admitting I’m not what I used to be.

I pray someday there be a miracle to end this cycle, but until then, I get up each day a push through because I have it in me (today) to not let this beat me. I’ve always been a fighter and survivor. Now I’ve learned to fight to live the day the best I can. I have learned the difference in surviving and living life, I will live life and keep my attitude that today is a good day, I’m here with ones I love, I’m still mobile just a little slower but maybe it’s time we do slow down and enjoy the good. I’m always “fine” when asked, yeah no. But why bring others down? It’s not going away so why dwell. There may come another day when I blame,hate and cuss......but not today!!!

You have said a lot of important things. That’s great you succeeded at getting your 75 year old client to be free of drugs. This goes to show there is no age where you are safe from drug addiction. From what you describe her pain was from muscular skeletal problems. Since I overcame the pain of 3 cervical disc herniations in my life, with PT, massage, exercise and lots of prayer I know it can be done without pain medication. (Maybe a little aspirin)There were so many times I wanted to die because it felt like the pain would never go away. It took five years. So I don’t believe narcotics should be prescribed for muscular skeletal problems. Expect maybe 30 codeine tablets in 6 months(to be used only for when the pain becomes intolerable).

Not all doctors are quacks and now the goo ones hand are tied...to be continued

[hsmaldo]

This is interesting as I just did some research for a friend who has fibromyalgia and is on a very low dose of opioids for the pain. But he has been on it for quite an extended amount of time.

Other things that he suffers from is EXTREME constipation, extreme disruption to sleep patterns, esophageal spasms, nausea, mental fog and lethargy and has severe pain that is hard to describe and not localized.

It was quite a shock when I started researching and found that each one of those things is tied to extended opioid use. I knew about the constipation, but the rest was an eye opener...to think that all these things that he is going through could be caused by the one thing that he thought was supposed to be helping him with his pain!

He is going to be looking into alternatives to the opioid that he is on and my fingers are crossed that these side effects will dissipate.

[DonnaH]

apologize

I feel I need to either apologize or defend my statement.
”not feel” I meant just the pains. By feeling the pain keeps me on track to learn how to move about more carefully. I just like when the pain subsides to a dull ache, or something feels good enough to over-ride it.

QUOTE=502E79;1519896]My experience has been that the pain I suffer is generally spasticity. Relentless at times. And to a minor extent the "out-of-nowhere" pain, the kind no opiate will ever reach.

I found that slow daily stretching is superior to any message. Spasticity still present but held at bay or even made less spastic, without any other means. Only you really know your body and what needs to be worked, the best masseuse with a great tactile sense is secondary, expensive and can become a dependency.

Also I am NEVER happy "not to feel"... my MS may be progressing but to lose contact, even if it is painful contact, is far worse. Mental location of my lower right leg in time and space is basically lost to me. But by using what I have, unadulterated, I manage.

Apologies to the OP with regards to thoughts on opioids. I agree with Snoopy. Also, I think opioids separate us even further from our own bodies. My body may be riddled with MS, but only I can discipline my body.[/QUOTE]

[502E79]

That's why the spa and massages to help alleviate the pain. It does help, I'm happy even if its just a temporary fix. I'm happy to "not feel" every chance I can.

My experience has been that the pain I suffer is generally spasticity. Relentless at times. And to a minor extent the "out-of-nowhere" pain, the kind no opiate will ever reach.

I found that slow daily stretching is superior to any message. Spasticity still present but held at bay or even made less spastic, without any other means. Only you really know your body and what needs to be worked, the best masseuse with a great tactile sense is secondary, expensive and can become a dependency.

Also I am NEVER happy "not to feel"... my MS may be progressing but to lose contact, even if it is painful contact, is far worse. Mental location of my lower right leg in time and space is basically lost to me. But by using what I have, unadulterated, I manage.

Apologies to the OP with regards to thoughts on opioids. I agree with Snoopy. Also, I think opioids separate us even further from our own bodies. My body may be riddled with MS, but only I can discipline my body.

[SNOOPY]

Hi Donna.

Please don't think I was reaching to defend opioids, I don't think covering any pain is wise.

I didn't think you were defending Opioids I do believe Opioids for short term is helpful for some conditions. Covering up symptoms, including pain, is what symptom management medications do, it's just how it is with this disease By the way, I see nothing wrong with your approach

Best wishes

[DonnaH]

Thx Snoopy

I thank you for the article, I read every word. Please don't think I was reaching to defend opioids, I don't think covering any pain is wise. That's why the spa and massages to help alleviate the pain. It does help, I'm happy even if its just a temporary fix. I'm happy to "not feel" every chance I can.
As I've said before I may be new to DX, but have lived this way for many years. I found CBD &
recently HEMP. Both are topical and do help a bit, I don't like to injest anything.
Just started Ocervus and hope that will ease some of the ache/pain load at some point in the future.
Once again thank you for feed back it's always appreciated.

Hi DonnaH.





I know the diagnosis of MS is relatively new to you so you may not be aware that Opioids are not typically prescribed for MS type pain and usually does not help pain experienced due to MS. I have used Opioids for other than MS.

Although an Opioid was helpful for the reason it was prescribed I always found it interesting that I still dealt with the MS pain. Opioids have never, ever, helped any pain I experienced that was related to MS. This has been proven several times due to using opioids for injuries, surgeries, etc. and never having them touch the pain of MS.

From the Multiple Sclerosis Association of America:
With MS, opioids are not as effective, and they are typically avoided.
https://mymsaa.org/ms-information/symptoms/pain/

MS type pain is treat differently. The link I provided above explains how MS pain is treated.

[SNOOPY]

Hi DonnaH.

Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
on the flip side, not all Dr are quacks and their hands have been tied due the bad apple.

As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight.

I know the diagnosis of MS is relatively new to you so you may not be aware that Opioids are not typically prescribed for MS type pain and usually does not help pain experienced due to MS. I have used Opioids for other than MS.

Although an Opioid was helpful for the reason it was prescribed I always found it interesting that I still dealt with the MS pain. Opioids have never, ever, helped any pain I experienced that was related to MS. This has been proven several times due to using opioids for injuries, surgeries, etc. and never having them touch the pain of MS.

From the Multiple Sclerosis Association of America:
With MS, opioids are not as effective, and they are typically avoided.
https://mymsaa.org/ms-information/symptoms/pain/

MS type pain is treat differently. The link I provided above explains how MS pain is treated.

[DonnaH]

Pain vs meds

I am the type who hates taking pills. BUT when I can’t stand it I do.
I'm a caregiver and my latest client was addicted to pain pills. There’s no doubt she had pain, but once I got her up moving and stretching she started to feel better. It took me a year to ween her off, she, at 75 she was a drug addict. Only because she had a quack who found it easier to write a script instead of helping her.

That is why we now have to suffer, the endless aches and pains that never subside. Not to mention the endless ER Drs who wrote norco, codeine and even morphine (for me personally) for anything I explained to them. I did NOT want them but because of last 25+ years of the easy way out they(dr) bred more and more addicts and and it was an easy way for addicts to get their “fix”. Go to the ER and say my back hurts, say I have a headache and out comes the script pad.

Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
on the flip side, not all Dr are quacks and their hands have been tied due the bad apple. Now it’s too late we are pushing water uphill to get our help.
They (government)are now trying find the middle ground and we are caught in the battle.
im not bashing all docs, just the ones who didn’t see past yesterday.
As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight. I hate not being able to just stand and walk across the floor. I hate the admitting I’m not what I used to be.

I pray someday there be a miracle to end this cycle, but until then, I get up each day a push through because I have it in me (today) to not let this beat me. I’ve always been a fighter and survivor. Now I’ve learned to fight to live the day the best I can. I have learned the difference in surviving and living life, I will live life and keep my attitude that today is a good day, I’m here with ones I love, I’m still mobile just a little slower but maybe it’s time we do slow down and enjoy the good. I’m always “fine” when asked, yeah no. But why bring others down? It’s not going away so why dwell. There may come another day when I blame,hate and cuss......but not today!!!

[palmtree]

After all those years of ignorance the National Multiple Sclerosis Society came out and told the truth. Our bodies can really hurt. We are just not allowed to tell anyone.

No one ever admits to being in pain without immediately insisting that they do not like to take any drugs because they “don’t like the groggy feeling”. Pain equals drug seeker.

Since Michael Jackson’s death there has been a war on pain patients and their doctors. The DEA started raiding doctors offices, they started forcing doctors to account for every controlled substance prescription they wrote and even limiting the number of controlled substance prescription pads they were able to obtain.

Then a psychiatrist in New York threw his weight around at the CDC. He got a group of five non-medical men behind closed doors and came up with an arbitrary morphine equivalent limit intended only as a guideline for primary care doctors who were prescribing pain medication for the first time.

The result was that this limit became law in almost every state. It was applied not only to patients who had never taken anything to long term pain patients who were being treated by a licensed pain management doctor. These patients were either abandoned or their dosage was cut so drastically that they were suffering unbearable existences. They turned to street and sought out heroin. They started dying.

Then the death report statistics were published creating an hysteria. It was aimed at showing a correlation between the prescribing of the opiate derived “opioids” and accidental deaths. They were taken at face value. There were a number of facts that were omitted. People who are in pain are more likely to fit into the category of people who have serious potentially life threatening conditions. Whenever someone dies there is a blood test done to determine if they had drugs in their system. If the answer is yes there is no further investigation into the cause of death and they are added to the statistic. Almost everyone who dies of an “overdose” has had other drugs in their system and alcohol, which has a powerful influence on mortality, is never mentioned.

There are many other facts that make the whole opioid crisis a sham. The most telling is that the number of presc written has dropped drastically and the death statistic is rising faster than ever. Common sense tells me that the culprits are not doctors and their patients.

Bottom line: people with MS and everyone on pain need to unite and create awareness and demand relief. There are many many cancer patients who are not being treated during their last hours before death. The fact is there is no medication, treatments, surgery, meditation or diet that will fix pain. God put the opiate poppy on this earth so humans could find relief from suffering. Nothing else has succeeded.

Time to speak out without shame and end the ignorance. If you doubt anything i am telling you research it for yourself.

[T19]

I know this sounds crazy but I get pain right before we get bad weather,maybe I should be a weather man! Lol

I though I was the only one! ♥️
I guess we could both find out whether new station because seriously I can always tell when it’s going to rain I get the worst pain and I never had this before my diagnosis of MS

[smalltowngirl]

TaoWarrior and msser,

Thanks for your reply. My first neuro was actually fairly young. Who knows why he thought this to be true?! I have since learned that pain is most certainly a symptom and got a second opinion with a different neuro. I'm on Gabapentin and Cymbalta now for nerve pain. Just kind of waiting for that to work.

msser, I'm so sorry you're dealing with so much pain. I wish you the best.

[msser]

Of course its a MS symptom

and I'v been in chronic pain now for 4 years now. every type of pain in the book - stabbing,shooting,burning,electric shock,radiating,stinging,pounding,................ .........

it's always waking up thinking how to get thru another day with this pain

only time I had a bit of relief was when I overdosed on my gabipentin one time by mistake (doubled my 12mg)

[TaoWarrior]

For a long time it was thought that pain was not caused by MS and the pain was only a secondary symptom. More recently it has been accepted that pain very much can be caused by MS. Is your Neuro older? I have had quite a few over the years and the older ones seem to cling to the MS doesn't cause pain thing.

Fortunately I get my pain pills from my PCP so it doesn't matter what my Neuro says. I've been seeing the same PCP for about 12 years now and been on pain meds for 9. My dosage gradually grew from 1-2 a day to 4-6 a day of 5mg vicodin. I know that some of that is addiction rearing it's head but I work 60+ hours a week and without some sort of something to knock down the pain I probably couldn't handle half that work.

[Carlyle]

Rain

I know this sounds crazy but I get pain right before we get bad weather,maybe I should be a weather man! Lol