Resuming Opiate Pain Treatment

[MSW1963]

Had an unexpected office visit with MS NP Friday. Hip joint pain has increased resulting in problems sleeping, which I mentioned during the OV. The NP rx'ed opiate meds after 2yr ago when a consultation with the new Pain Management clinic doc didn't workout. Had a cultural clash/? with the PM doc, in addition to what seemed the PM docs lack of understanding MS.

Since starting meds I've noticed I'm steadier on legs/feet while standing and walking, can stand for longer periods of time at the kitchen sink for instance, and modest improvement in bowel and bladder incontinence, energy is improved, even mood is improved.

I've experienced similar MS sx improvements on pain meds over the 10yrs I was treated with them, and the past 2yrs being off them have been hell. I think I one of those patients who experiences a pain med paradox effect.

I couldn't be more pleased about the unexpected turn of events.

[Diamond57]

What pain medication are you on????

[MSW1963]

I'm taking generic Vicodin for pain.

[msgijo]

Where do you live and is your doctor taking new patients?

After MANY years I have finally given up on getting an rx for pain meds . Seems that all my doctor will prescribe is "baby aspirin". Well, not literally but they have the same effect.
In fact it seems that he doesn't like prescribing any meds - everything that I have asked about for symptom relief he disagrees with. Even with DMD's he waits years to see if "anything comes up" ...

Yeah I am working on a new doctor

[MSW1963]

I'm on the left coast since 2005, dx 5yrs before relocating. I was dx'ed while living in the Gulf Coast area, NOLA, relocated here in the aftermath of Katrina. My then NOLA MS Specialist rx'ed pain meds during the 5yrs before I relocated to the Pacific Northwest. In the PNW it's getting very difficult to get pain med treatment outside of a Pain Management Clinic type practice.

My MS doc here is in a large hospital setting. The hospital protocol for pain treatment transitioned to a Pain Management Clinic referral type system about 3yrs ago which resulted in all pain med patients being referred to the Hospital's PM Clinic. I'm sure there are some longer term patients in my docs MS practice who he continues to rx pain meds, but after 10yrs with him, I apparently carry the stigma of being from the south, all the bad press associated w/Katrina, despite having never abused any of my meds.

I've been seeing the same MS specialist for 10yrs, which coincides with the upcoming anniversary of hurricane Katrina and in large part, the reason I relocated to the PNW.

Regardless of what part of the country you are located, since the increase in legalized Marijuana, the DEA is, in my opinion, desperate to justify no budget cuts or job losses via the legalization of MJ, so they are tweaking the numbers associated with Pill Mil type abuse. MOO

It would be quite a commute for you, LOL. Wishing you the best of luck getting pain treatment.

[msgijo]

Yeah just a tad further than I would be willing to travel.

Just got into a MS Clinic, and I was impressed with the first visit. I didn't mention pain issues (trained too well to not do that!), but since they did seem much more knowledgeable about MS symptoms maybe ...

My next visit is in a month. She already mentioned getting me into PT, so pain management shouldn't be too difficult to get into also.

Thanks for the reply. And for the good luck wishes you sent - since I am, as you said, 'from the south' I will need them .

[MSW1963]

Nothing like mentioning your pain to get the 'abuser' red stamp in your medical records. Glad to hear the first appointment with the new MS Clinic went well for you.

I would have no problem with the PM Clinic if only the 'terms of treatment agreement' didn't have so many of my MS sx on the list of offences with the potential of reaching the level of 'termination of treatment'. Add insult to injury, there's the additional cost for monthly OVs and monthly drug screening, both of which result in a financial burden.

[tommylee]

I've experienced similar MS sx improvements on pain meds over the 10yrs I was treated with them, and the past 2yrs being off them have been hell. I think I one of those patients who experiences a pain med paradox effect.

I couldn't be more pleased about the unexpected turn of events.

First off congratulations on feeling better.
You seem to have been in this long enough to know what works for you.

Don't jump thru anybody else's hoops if you are miserable!

Some people may judge me harshly due to the fact I use mmj 24/7 for many years.
No plans on stopping.
What they do not understand is that I have not peed or crapped my pants in years.
I can completely take care of myself. Make my own food, clean up after myself, pay my bills, ride a bike. Sometimes I have enough left to help someone out.(try to be helpful)
It may sound pretty minimal but I am grateful for mmj or my life would be even less productive.

At some point you just take what works for you and full speed forward.

Take care of yourself and feel good today.
(tomorrow may totally suck?)

[MSW1963]

I'm so happy for you and the relief you get with mmj. I tried it about six months ago, but the outcome was a disaster. My balance deteriorated to the extent that I couldn't stand for several hours after only a few puffs. I was very disappointed with the outcome.

I've found since starting pain meds in the last week that the mild stimulant effect I tolerated previously, is no longer as well tolerated, almost as intolerant as Ritalin. I'm hoping it improves soon.

[tommylee]

I'm so happy for you and the relief you get with mmj. I tried it about six months ago, but the outcome was a disaster. My balance deteriorated to the extent that I couldn't stand for several hours after only a few puffs. I was very disappointed with the outcome.

I've found since starting pain meds in the last week that the mild stimulant effect I tolerated previously, is no longer as well tolerated, almost as intolerant as Ritalin. I'm hoping it improves soon.

A few puffs was probably too much.
Pot has changed a lot and is much stronger than I ever imagined in my youth.
If you ever try it again; stop after one puff.

It kind of started that way for me also. (I got real stoned) But after a while I learned to handle it and have not been stoned in years.
It was easy for me to avoid opiates due to the fact they leave me feeling like a useless lump.
I got used to the mmj and can function with it.

Good thing there are options because one size does not fit all with pain management.

As I stated in the beginning; It sounds like you have been at this for a long time?
You are the best judge of what improves your life and what takes you backwards.

Do what works for you!

[J-Bo]

I'm really glad to hear that you've been able to get your pain meds again, MSW. It sounds like that's what is right for you.

I agree with your theory about the DEA. Other losers as MJ is legalized in more places: law enforcement that gets to keep assets they seize through civil forfeiture (legalized stealing) and for profit prisons. It's a tragedy that so many lives have been ruined over this stupid war on drugs.

Now, if only my backward state would legalize MMJ sooner rather than later.

[MSW1963]

J-Bo, I totally forgot about seizure of assets, and don't get me started on our for profit prison system. One notorious case I'll never forget involved non-violent juvenile, truancy type 'offenders' being put through the JJ system by a judge with financial interest in a for profit juvenile detention center. There were a couple of suicides that resulted from the trauma of incarceration. The judge got a 30yr prison sentence. Not nearly enough.

I think it's a matter of time before mj is legalized across the country. It's fairly universally accepted where the war on drugs has gotten us over the past 50yrs?

Do you have access to Medical mj in Pa? MMJ has been available here in Oregon for some time, recreational mj was approved for retail distribution in 2016.

Fingers crossed for you to have legal access soon.

[J-Bo]

Yeah, that school-to-prison pipeline case with the judge getting kickbacks happened in good old Pennsylvania. Appalling. As for PA legalizing MMJ, our new governor has said that he will sign such legislation, but it remains to be seen if it will ever get to his desk. The state senate looks likely to pass it this spring, but the state house could obstruct it. Maybe they will surprise us and do the right thing.

And it sounds like you are aware of asset forfeiture, but a lot of people don't know that it's not just about seizing property from drug smugglers. No, if you get stopped for something as minor as not signaling a lane change, and they find anything in your legal possession that they want, like cash, they can just take it from you and keep it. You don't even have to be charged with anything. Hard to believe, but true.

[Fed Up]

I too have been experiencing issues with acute pain, stiffness and general feeling lousy. I've used mmj (medicinal cannabis) almost exclusively off and on for over 2 years now.

The opiates definitely do the same thing for me...over-rides the fatigue/lethargy, pain and able to move fairly well. Unfortunately, I was on opiates for 17 years and was dependent and decided to get off the opiates and other drugs. I read of mmj and used it successfully and then quit using it.

Then they said M.S.

Back to mmj, except I had bad balance issues and I hated that being affected. This past year I was busy helping a neighbor on her journey to the other side and had little time for myself. For some strange reason my balance returned throughout the year and in November the cog fog lifted quite a bit. I wasn't using much mmj or opiates, I was doing fairly well but, certainly inhibited.

Since December it has been a nightmare, Shingles and all sorts of symptoms. Mmj just seems to stop working unless I change strains or take holidays (vacation) from the medications/mmj or opiates. I was a pain clinic patient since '91. I don't have the answers but, long term pain control really needs to be re-evaluated, first they leaned to heavy on over prescribing and now under prescribing.

I managed to stop taking so much of it and then I take a week or 2 or more without any opiates (using mmj instead) frequently and when I return a lower dose of the opiates, it works as well as it did the first time. Same with mmj. 3 and 4 years ago I could go for weeks without anything for pain, not anymore. Sure hope whatever is going on with me stops pretty soon....I hate Pain.

Truth is, if the police would really do their jobs and arrest the dealers selling opiates and help protect patients that need them, there would be a better protocol for pain control--instead of the Gov't(biggest insurance agency in the U.S.A.) regulating pain clinics and prescriptions, making 88 year old patients dying of cancer and those with serious auto-immune disease pee in a cup to get pain medication...I doubt much will change with nationwide legalization. What will change is to write your elected officials of how unfair it is to take your rights away and take your pee--like a fingerprint or DNA sample to prove you are not a criminal to get needed medical care including pain control. Yet the criminals that obtain and sell those drugs don't have to worry of anything, their "rights" to without fingerprints, pee or any dna aren't taken away for stealing patients opiates. I hate being treated like a criminal and giving up my basic rights of identity taken away to acquire necessary medications. I know, I live 2 doors down from a drug dealer and when I called the cops for some good busts of vehicles hiding stuff under the wheel wells, etc...they referred me to a drug task force center, open M-F from 9-4PM, they NEVER call back or answer the phones. The deals were mostly at night.

Sorry if you feel I am ranting too much but, I find it very revolting that patients don't cry of their freedom of privacy being taken away for pee tests, like an arrested criminal. I really felt it needed said.

I'll shut up now, sorry....soap box.

Oxycodone seems to help plenty, except...I don't want to take them to be able to function, I just want it all to go away! Just like everyone else. I hate having to over plan things to avoid worse pain or symptoms and I hate to cry...I can't do that.

As for mmj nationwide; well now that would be as nice as World Peace, as far as I am concerned.

Just a little more info: a patient in non mmj state of Florida was arrested for cultivating and other things. I guess they felt it was cheaper to let her go home and grow than pay for her ALS drugs. Now she is suing to get the plants they took from her back. Later...a bill to pass mmj last year voted no to mmj in Florida.
here is part of the article of the patient in a Norml site:
[QUOTE]

Florida: Lou Gehrig’s Disease Patient Sues for Cannabis Protection

•by Paul Armentano, NORML Deputy Director

May 8, 2013

Longtime Florida activist Cathy Jordan, a 63-year-old woman who consumes cannabis to mitigate symptoms of amyotrophic lateral sclerosis (ALS aka Lou Gehrig’s disease), a debilitating condition that she has lived with since 1986, today filed a suit against Sheriff Brad Steube of Manatee County, FL.

Ms. Jordan alleges wrongful conduct on the part of the sheriff’s department when, on February 15, 2013, they raided her home and confiscated 23 medical cannabis plants, which were being cultivated for her by Cathy’s husband Robert Jordan. The Jordans were both cooperative when the sheriff’s department arrived at their home, and they acknowledged they were growing medical marijuana for Cathy’s medical use. The police raid of the Jordan’s home came just days after lawmakers introduced legislation, the Cathy Jordan Medical Cannabis Act, which sought to authorize the physician-supervised use of cannabis for those diagnosed with serious debilitating conditions. (Florida lawmakers failed to hold hearings or vote on the measure.)

After the Manatee County State Attorney’s office reviewed the facts of the case, they issued a memorandum on April 2, 2013 declining to prosecute either Cathy or her husband. The Manatee County State’s Attorney’s office found that they could not likely overcome a medical marijuana necessity defense, which would be raised by the defendant should a prosecution be initiated. However, the sheriff’s department has refused to return any of the cannabis that they confiscated from Ms. Jordan during the February 15 raid.

With this lawsuit, the plaintiffs seek a declaratory judgment finding that they have a legal right to cultivate and possess medical marijuana under Florida law; an injunction barring the sheriff’s department from making further seizures of medical marijuana from Cathy and Robert Jordan; and an injunction barring the initiation of criminal charges against either of the plaintiffs for their continued cultivation and possession of medical marijuana. [QUOTE]

I have mixed feelings of using one or the other without proper ways of dosing and administering mmj. I'll make those comments in the http://www.msworld.org/forum/showthr...-Education-101



I've made butter, oil and other forms. Brownies, you name it. What I am finding that helps the best without disturbing my balance at all is: making mmj infused olive oil in a crock pot or other methods (can be found by googling making cannabis butter and even on You Tube-warning, watch several methods and the one you plan to use, several times). The ABSOLUTE BEST way I've made any of it that gave me excellent pain control and ability to do things was making a buckwheat pancake mix from Fresh and Easy (now Wild Oats) and using the 1/3rd cup of infused canna olive oil in it and I was pain free. It is slower acting, so slow on dosing and it lasts so very much longer.

The medibles (I call them) tend to keep the high functional and not goofy with extrordinary pain control. First time, I ate one as a snake after pills vits/minerals, etc. I woke up the next morning with the plate licked clean beside me in the bed. I assume my little dog licked it clean. More certain I am that I licked it first. After discovering that, I am now making more butter and not oil, the uses in other things is easier..like oatmeal, toast and just to take a tiny spoon of it.

As said, take some and give it time to work. For ingestibles, often it is very slow in onset or it waits for awhile. Don't eat or take more than a small dose until you know what it'll do, like smoking...wait. Some don't even work well when smoked until 40 minutes later.

There is no guidebook for strains and food sources that help the mmj act sooner or later.

Good luck on the pain control issue. May I suggest if the opiate is no longer working to quit taking it for a couple of weeks and then re-start. Even a week would help. As it does for me.

My last 3 neurologist say; "MS isn't suppose to be painful!" Where the heck do they get that information? Since when did a spasm or a stiff muscle not hurt?
OK< finished complaining....have a good week to come. fed

[MSW1963]

Fed, so sorry to hear what a nightmare the past year has been for you. From what I've seen and heard about shingles I hope it's something I'm spared, fingers crossed.

I'm pretty scared off of mmj for now. I typically will try a med again in smaller dose or some other adjustment in the hope that my tolerance improves, but it can take me a while to get past the fear of a repeat side effect. I just don't tolerate very many meds that I've tried.

When I stopped taking pain meds 2yrs ago, I walked out of the doc's office and didn't look back. No withdrawal sx. More extreme pain rebound for a week or 2. I've managed, but it has been a struggle and not an easy time.

I remember when I was still working, I had a client located on a main business strip with limited parking. I had to park off the main street, walk a couple of blocks. The route included passing a small doctor's office that I eventually figured out was a Pill Mill operation. There were 'patients' walking out of the doc's office handing their scripts over to paying customers, out in the open. Actually had to interrupt a few transactions just to stay on the side walk while toting my business material on wheels behind me. The best part is police headquarters consisting of a huge gothic court building is around the corner from the pill mill.

I'll keep the mediables? in mind if/when I decide to try again. Glad that you've found something to manage your pain.