Avoiding withdrawal

[uwllv88]

I just posted this in the wrong place so am re-posting it in a new thread:


I am currently taking 10 mg 3 x a day oxycodone plus 30 mg Opana 2 x a day - My pain management clinic closed last month and I went to a different clinic (waited a month to get in) only to be told he does not treat fibromyalgia chornic pain with these medicines. He wanted to give me methadone - what mg would I need of methadone to avoid withdrawals from my current meds?

Thanks.

[lobelsteve]

Opioids are not a good choice of medication for FMS.
Methadone is a terrible choice of medication for treating withdrawal.

The new doc could at least be reasonable and give you a reasonable taper such as:

Opana ER 20mg bid for 1 week then 10mg for 1 week then stop.
Continue the 10mg oxycodone tid during the Opana taper then goto bid for 1 week then qd for 1 week then you are off all opioids.

Now you are off to a fresh start with a new doc- however- any dfoc offering to start you on Methadone for opioid withdrawal needs to be further investigated to see if you really want to see a doc whose idea's defy safe practice.
Methadone can only be started at 5-10mg bid and not be increased safely in the first week. YMMV.

[uwllv88]

Opioids are not a good choice of medication for FMS.
Methadone is a terrible choice of medication for treating withdrawal.

The new doc could at least be reasonable and give you a reasonable taper such as:

Opana ER 20mg bid for 1 week then 10mg for 1 week then stop.
Continue the 10mg oxycodone tid during the Opana taper then goto bid for 1 week then qd for 1 week then you are off all opioids.

Now you are off to a fresh start with a new doc- however- any dfoc offering to start you on Methadone for opioid withdrawal needs to be further investigated to see if you really want to see a doc whose idea's defy safe practice.
Methadone can only be started at 5-10mg bid and not be increased safely in the first week. YMMV.

I know my choice of treatment is not the perfect choice, but neither is the extreme, debilitating pain I have every single day - I am 61 years old and have led an extremely active busy life until this happened. Before I started this drug regimen I was bedridden and felt like my life was over. I went from 55 yrs to feeling 95. I've been on opiate treatment for 3 years and I know the dangers of them - I purposely make myself go without dosages so as not to keep increasing the dosage. It can work and it has worked for me -I'm just devastated that after finally having a sympathetic pain management doctor that I am left on my own.

You answered my question. Based on your answer I will not be returning to that "so called" doctor and I will not be filling his prescription for methadone. My primary care doctor will write my prescription until I can get into another pain clinic that will continue treating me. I just hope it won't take more than another few weeks.

Thank you for your response.

[uwllv88]

I know my choice of treatment is not the perfect choice, but neither is the extreme, debilitating pain I have every single day - I am 61 years old and have led an extremely active busy life until this happened. Before I started this drug regimen I was bedridden and felt like my life was over. I went from 55 yrs to feeling 95. I've been on opiate treatment for 3 years and I know the dangers of them - I purposely make myself go without dosages so as not to keep increasing the dosage. It can work and it has worked for me -I'm just devastated that after finally having a sympathetic pain management doctor that I am left on my own



I forgot to point out that I tried everything else there was to try prior to starting opiate treatment. Neurontin, lyrica, cymbalta, vioxx, ibprofen, every antidepressant known to man - they either didn't work or I could not live with the side effects. So I finally get some relief and I have to deal with everyone telling me how terrible opiates are. I may be physically dependent but I am smart enough to avoid misusing or abusing them - I am fully aware of the consequences. My pain level without treatment is an 8-9 - with treatment a 3 - 4 and for a few hours each day it's at zero. I am overwhelmed with the thought of going back to how I was before. I'd almost rather be dead than live like that again.

[jtroy]

Hey there uwllv88:

I understand where you are coming from. People often will say to me, "I can't imagine having to deal with that kind of pain at such a young age and after going through vet school...blah blah"...my comment is that I can't imagine being in your shoes where you've lived that many years basically free of chronic pain and then blam...at the highest point in life be suffering (btw..although I say that 'many' years 61 isn't "old" in my book.) At least you've found relief in opioids and that is a positive sign...I wish they helped me as much as they do many of you guys, but even with not the greatest relief from drastically high dosages of them (like a daily dosage of what you take in a month) I still get enough that living w/out them would be hell.

I know that Dr. Lobel "gets" that...it's just that when you posted the thread it was almost like your original clinic shut down...you waited and got into another...and then was basically told that you weren't going to get opioids for pain control...but that Methadone would certainly be scripted to manage your taper off or withdrawl or whatever....I'm sure he thought what I did, "wtf??" Methadone is far more complex a medication than many docs are willing to realize and it costs lives...not to mention countless people who need it for pain who cannot get access to it. You being given Methadone to taper off opioids with rather than tapering your Oxymorphone/Oxycodone regimen you currently take is crazy.

I agree that fm is likely better treated without opioids in a majority of people...perhaps you are in a group of folks, however, that benefit enough from it, coupled with the fact all the other meds generally used for it either don't work or can't be tolerated, that you should stay on the regimen you currently take. Perhaps you could ask your PCP to guide you in this manner (maybe put in a call to a specific pm clinic, etc.) while he mainains your current script.

My gmother (who really is my mom) is in her mid-70's and suffers from fm as well...it pains me desperately to see our older people suffering from chronic pain b/c all my life I've wanted to be there myself and hopefully, through dumb luck and the help of the good Lord, be enjoying my life more than ever before....and as a young guy with chronic pain I know how much it takes away from life.

If you ever need any advice, help, etc., never hesitate to email me at: tjandfon@hotmail.com anytime...keep us posted.

Regards,

T. Jones, DVM

[lobelsteve]

Dr Troy is right.

Opioids are rarely a consideration for FMS and there is some science towards that end.

Decreased Central μ-Opioid Receptor Availability in Fibromyalgia
The Journal of Neuroscience, September 12, 2007, 27(37):10000-10006; doi:10.1523/JNEUROSCI.2849-07.2007

Based on the good response you have had from opioids, I would question the diagnosis and assume you may have "lazy doctor syndrome" until proven otherwise. 90+% of patients I see who come in with the diagnosis of FMS leave with a long list of labs and imaging detailing theie mixed connective tissue disease, other autoimmune disorder, or cervical and lumbar spondylosis.
FMS is very real and is often diagnoses as a convenience to tell the patient something is wrong and we don't know what.

As far as the methadone issue- it needs to always be started at low doses and titrated slowly upwards to help avoid deadly side effects. Opioids a e opioids so the doc wanting to change your current regimen to a wildcard regimen is not thinking things through and I would prima facie discount his clinical abilities (I have no idea who this doc is). There is only one downside to your regimen: cost of Opana. But as I am not paying for it, I have no problem Rx'ing it. (This is not an offer as I am not the treating MD and there is no MD/Patient relationship). Stupid lawyers.

[Kira]

Based on the good response you have had from opioids, I would question the diagnosis and assume you may have "lazy doctor syndrome" until proven otherwise. 90+% of patients I see who come in with the diagnosis of FMS leave with a long list of labs and imaging detailing theie mixed connective tissue disease, other autoimmune disorder, or cervical and lumbar spondylosis.
FMS is very real and is often diagnoses as a convenience to tell the patient something is wrong and we don't know what.


I DON'T have fibromyalgia... I have a mitochondrial disorder that affects my muscles (and other organ systems). BUT... I have had a few doctors & PTs say that they can see how I would have ended up with a diagnosis of fibromyalgia and/or chronic fatigue syndrome if we hadn't pushed so hard for a diagnosis (and if I hadn't been one of the few people with mito that happens to get recurrent rhabdomyolysis, which makes it a bit harder for them to dismiss my muscle issues since I get such obviously screwed-up labs). I have had conversations with a few different providers about how there are definitely people walking around with a dx of fibromyalgia &/or chronic fatigue syndrome who probably have a completely different disease that the docs just didn't think to test for (or didn't bother to test for).

I know that fibromyalgia and chronic fatigue syndrome ARE real diagnoses... but I definitely think that a lot of people are misdiagnosed with these things because their doctors just didn't figure out what was really wrong with them, for whatever reason. There are a million things that can give you widespread, chronic muscle pain... some of them are rare, like my disease... some are hard to test for, like my disease... and doctors don't always figure it out.

Whatever is causing your pain, I hope you are able to find a competent doctor that cares and a treatment plan that really helps. No one deserves to hurt all of the time, no matter what is causing it.

[uwllv88]

Based on the good response you have had from opioids, I would question the diagnosis and assume you may have "lazy doctor syndrome" until proven otherwise. 90+% of patients I see who come in with the diagnosis of FMS leave with a long list of labs and imaging detailing theie mixed connective tissue disease, other autoimmune disorder, or cervical and lumbar spondylosis.

FMS is very real and is often diagnoses as a convenience to tell the patient something is wrong and we don't know what.

As far as the methadone issue- it needs to always be started at low doses and titrated slowly upwards to help avoid deadly side effects. Opioids a e opioids so the doc wanting to change your current regimen to a wildcard regimen is not thinking things through and I would prima facie discount his clinical abilities (I have no idea who this doc is). There is only one downside to your regimen: cost of Opana. But as I am not paying for it, I have no problem Rx'ing it. (This is not an offer as I am not the treating MD and there is no MD/Patient relationship). Stupid lawyers.

As for "lazy doctor syndrome" I don't really think that was the case. They really tried everything they could think of. Before starting opiate therapy 3 years ago I underwent MRI's, Brain scans, just about every test for everything my doctors could think of. My family doctor prescribed tests, referred me to a neurologist who performed tests. I went to 2 neurologists, actually 3! I also have been to a rheumatologist who is the one who diag. me with fm. My symptoms started about 12 years ago with tendonitis in both arms such that I had to quit my legal assist job because I couldn't keep the pace of typing all day. Accompanying that was "brain fog" so bad I had to quit before I was fired because I was making so many REALLY STUPID mistakes. Then I got dizzy spells that lasted for 2 weeks at a time, they would go away for a few weeks and come back for EXACTLY 2 weeks every time! Weird? Yes. and Yes, before asking, I went to an ENT specialist and had exhaustive testing for the dizziness. ALL NEGATIVE.
One of my neurologists diagnosed me with "singular sclorosis to be differentiated frm "multiple" - said I would have a few episodes and it would disappear forever. I was told to get rides to work and get out at the door so I would not get overheated or too cold. :rolleyes: I had many many more episodes that lasted for about 5 years. Now I only rarely get the dizzy spells so they did disappear, only to be replaced by my severe daily pain. Two years ago it was mostly in my arms, shoulders and back but I couldn't get myself dressed because I couldn't raise my arms up and my muscles seemed to atrophy from non-use. After getting my swim spa I have gotten alot of muscle tone back in my arms and they are no longer painful. Now the pain is mostly in my back, hips, thighs, knees, legs and feet. I have acid reflux disease and severe osteoporosis (which I was diag. with PRE-menapause (I have not had a hysterectomy either) at -2.5 and is now -3.8 despite taking actonel for a couple of years and now Boniva. I've thought about the yearly shot. I also have a Vit D deficiency which I'm being treated for even though I take plenty of calcium containing Vit d.

So much for my medical history. I am open to an educated diagnosis just in case my symptoms jump out at anyone. I am willing to start going back to doctors although I really was glad that part was over - it got so tiring having tests come back NORMAL.

I am willing to drive any distance to a good pain clinic if anyone can suggest one.

[uwllv88]

them, for whatever reason. There are a million things that can give you widespread, chronic muscle pain... some of them are rare, like my disease... some are hard to test for, like my disease... and doctors don't always figure it out.

Whatever is causing your pain, I hope you are able to find a competent doctor that cares and a treatment plan that really helps. No one deserves to hurt all of the time, no matter what is causing it.

I looked up the symptoms of mitochondrial disorder and I don't have any of them. I actually wish I did! Anyway, I wanted to thank you for your caring comment. I appreciate it.

[Kira]

I looked up the symptoms of mitochondrial disorder and I don't have any of them. I actually wish I did!

Yeah, I didn't mean that I thought you had mito... my point in the first post was just that I have also heard that a lot of the times docs will say it is fibro when actually they just haven't figured out what it is. Sorry if I was unclear.

Although I am not sure what you mean when you say that you wish you did have mito because this is NOT a disease that anyone would want!!!!!!

I have severe symptoms that affect multiple organ systems (since mitochondria are a vital part of nearly every cell in the body). I do have severe pain (on long-acting opiates), fatigue to the point that I spend nearly all of my time on the couch or in bed, and problems with multiple organ systems (muscle, neuro, autonomic, GI, cardiac, respiratory, kidney, acid/base & electrolyte, etc, etc). Many of my mito flares are life-threatening, especially when the flares involve rhabdomyolysis. Very minor stresses on my body can bring about serious mito flares which often result in hospitalization (I've been hospitalized about 30 times in the past few years). The effects of my mitochondrial disorder are bad, but there are people with mito who are much sicker than me (such as people who have symptoms in infancy/childhood with severe neurologic issues, seizures, developmental delays, etc). Mito is life-threatening for many people.

So... I am not sure what you read about mito, but a better source might be to check out the info on the United Mitochondrial Disease Foundation website (www.umdf.org (http://www.umdf.org))... it is DEFINITELY not a disease to wish you have.

This is not to say that you don't have significant pain... sounds like you do... or that your own medical issues don't suck and interfere with your life. Just... mito is definitely NOT something that you would wish you had! It hurts, it makes you unable to do much of everything, it affects every cell in your body and can make any of your organs eventually stop working normally, there is not an effective treatment, it is life-threatening, it is progressive, and it is rare enough that most doctors literally don't know anything about it and so you have to fight just to get the care you need every time you are sick and have to go to the ER & get admitted to the hospital.

Granted, there are some people with milder mito symptoms... Maybe whatever you read about mito that made you say you wish you had it was posted by some of those people with milder symptoms... To really have a full-blown mitochondrial disease, though, is hell.

If I mis-read what you were saying when you said "I actually wish I did!", I'm sorry... but that comment really hit a nerve.

I'm sorry... I really don't want to be argumentative and I openly admit that I am defensive about this... I honestly do hope that you are able to find a doctor that can help you and that you keep getting decent pain relief from whatever treatment plan you & your new doctor come up with. But believe me... if you knew what it was like to live with mito, you wouldn't wish you had it. At all.

[Mark N]

uwllv88, dr Steve was referring to the new doc that recommended methadone as the lazy doc syndrome. It is good to hear you are searching for another doctor. I understand your situation as life with pain control is far better than life with none when pain levels are so high. I hope you find a doctor more in tune with your situation that will work with you.

[uwllv88]

If I mis-read what you were saying when you said "I actually wish I did!", I'm sorry... but that comment really hit a nerve.

I'm sorry... I really don't want to be argumentative and I openly admit that I am defensive about this... I honestly do hope that you are able to find a doctor that can help you and that you keep getting decent pain relief from whatever treatment plan you & your new doctor come up with. But believe me... if you knew what it was like to live with mito, you wouldn't wish you had it. At all.
__________________

I'm really sorry - yes, you misunderstood what I meant. I meant I wish I had some other diagnosis other than fibromyalgia since then I would have a name to put with the significant life altering pain I suffer and have been suffering for so many years. ANY diagosis that would tell doctors and people in general that there is something wrong with me and that it is not in my head as is what I've felt they've been saying for so many years. Yes, fibromyalgia has gained a lot more respect since so many people are suffering but a fair number of people and doctors still refuse to say it is a "real" disease. So forgive me for sounding like I was saying I wish I had mitro - I really don't! It was a sarcastic remark and I'm sorry and never meant to make light of your pain and suffering.

[uwllv88]

uwllv88, dr Steve was referring to the new doc that recommended methadone as the lazy doc syndrome. It is good to hear you are searching for another doctor. I understand your situation as life with pain control is far better than life with none when pain levels are so high. I hope you find a doctor more in tune with your situation that will work with you.

Thank you Mark. I was happy to get a phone call today from the second clinic my PC referred me to giving me an appointment on Friday. I am looking forward to it and hope it works out better than the last clinic.

[Peter B]

UWLLV88,
Just make sure you're taking the vitamin D4 (ergocalciferol) and not the more common D3 (cholocalciferol). Otherwise you're wasting your money and effort.

Just my 2 cents,
Pete

[Kira]

I'm really sorry - yes, you misunderstood what I meant. I meant I wish I had some other diagnosis other than fibromyalgia since then I would have a name to put with the significant life altering pain I suffer and have been suffering for so many years. ANY diagosis that would tell doctors and people in general that there is something wrong with me and that it is not in my head as is what I've felt they've been saying for so many years.

I get what you're saying and really do understand what you mean because it took me years to get a dx. My first big, impossible-to-ignore mito flare was in college and involved neuro symptoms, along with a bunch of other symptoms that I now know are typical for almost every mito flare I get. At the time, everyone (docs, friends, family, boyfriend) thought I was nuts or at least that I was whining & making a big deal out of something that was a minor illness at most. They did a brief workup for MS, Lyme, and some other scattered tests... then proclaimed it "non-organic" (i.e. all in my head) and were just plain mean. Meanwhile, I was REALLY sick and no one was doing anything about any of it because they thought nothing much was wrong with me. One of my symptoms was that I vomited so much that I lost 17 lbs in about a month... a resident actually had the nerve to write "I see no organic reason for her complaints of vomiting and suggest an evaluation for an eating disorder..." (of course, they hadn't done a single test or even a basic 30-second physical exam to evaluate my vomiting, which actually has a very real and straightforward cause that would not have been very hard to dx even if they didn't know about the mito... I have terrible GI motility & my stomach doesn't empty, which shows up quite nicely on various tests).

Anyway, I am rambling about myself... but I do kknow what you mean when you wish they would give you an answer, any answer... I really do know because I have lived it (many people here have).

When I finally got the results back from the muscle biopsy that gave me the mito dx, and I saw that I do in fact have mito, the predominant feeling was actually relief... NOT relieved that "hooray, I finally have a dx of an awful disease and my life will be SO GREAT with mito" but relieved that "now they will finally believe me when I tell them how bad I feel and when I ask for help when I'm sick."

[lobelsteve]

I get what you're saying and really do understand what you mean because it took me years to get a dx. My first big, impossible-to-ignore mito flare was in college and involved neuro symptoms, along with a bunch of other symptoms that I now know are typical for almost every mito flare I get. At the time, everyone (docs, friends, family, boyfriend) thought I was nuts or at least that I was whining & making a big deal out of something that was a minor illness at most. They did a brief workup for MS, Lyme, and some other scattered tests... then proclaimed it "non-organic" (i.e. all in my head) and were just plain mean. Meanwhile, I was REALLY sick and no one was doing anything about any of it because they thought nothing much was wrong with me. One of my symptoms was that I vomited so much that I lost 17 lbs in about a month... a resident actually had the nerve to write "I see no organic reason for her complaints of vomiting and suggest an evaluation for an eating disorder..." (of course, they hadn't done a single test or even a basic 30-second physical exam to evaluate my vomiting, which actually has a very real and straightforward cause that would not have been very hard to dx even if they didn't know about the mito... I have terrible GI motility & my stomach doesn't empty, which shows up quite nicely on various tests).

Anyway, I am rambling about myself... but I do kknow what you mean when you wish they would give you an answer, any answer... I really do know because I have lived it (many people here have).

When I finally got the results back from the muscle biopsy that gave me the mito dx, and I saw that I do in fact have mito, the predominant feeling was actually relief... NOT relieved that "hooray, I finally have a dx of an awful disease and my life will be SO GREAT with mito" but relieved that "now they will finally believe me when I tell them how bad I feel and when I ask for help when I'm sick."

Hijack thread on

Hey Kira,

you coming to Atlanta next month for the Mito conference?

Hijack thread off

[Kira]

Hijack thread on

Hey Kira,

you coming to Atlanta next month for the Mito conference?

Hijack thread off

It would be great to be able to travel like that, and would be nice to try to squeeze in a follow-up with Shoffner while down there... but I just can't physically do stuff like that these days. They need to have a mito conference up in Wisconsin one of these years... then maybe I could go.

/Hijack thread off againn