Coming Off of Narcotics

[Clashboy]

Dear Brad and Kira,

Sorry for not being on the Board for a long while. I sure hope you both are doing well. Believe it or not, I pray for you two every night.
Well, pain management sure is different in this part of the country. Once the Pain Doctors would learn I was on 20 mgs of Methadone and 120mgs of Oxcodone, they were like "what the h*%l. Ever since moving to Asheville, NC, I couldn't find one Doctor here that will keep me on a narcotic protocol; so, I have been receiving nerve block injections while titrating off of the two aforementioned opoids. The nerve blocks have been effective in making my limbs feel stronger; however, no way do they control the pain as effectively as the medications. I have titrated completely off the Methadone (it's been about two weeks) and now they are weaning me down off the Oxycodone at 15mgs per 5 days and it is not the withdrawal that sucks, it's the escalated pain in the back of my legs, calves and back. Holy Moly, every 3 am I wake up with the sceaming meemies. I can't get down to 90 mgs and am at 115 mgs, just 5 mgs down from my original dosage. The Pain Doctor in Colorado is the one weaning me down and can't understand why the pain folks here in Asheville are so anti-narcotic. I know Kira knows how effective the Oxycodone is. If there is any advice on what I can consider doing, I am begging for your input.
If anyone else out there knows of a pain physician in the North Carolina area that will be reasonable about my need for an IR medication, I sure would be interested in knowing about them. I have yet to meet a Doctor here that knows what Mitochondrial Disease is. In addition to the tiration, I was referred to an ND and I am talking these Mitochondrial supplements made by Xymogen. I know how you feel about the supplements Brad, 1 is for cleansing and handling inflamation, the other for building my IGg (both of these mix-in drink concoctions are super high in protein) and he added 3 Magnesium pills a day, a super Omega 3 supplement, plus i still am on the Carnitor and B2. But he had a fit about me drinking a soda to feel better. Oh, and I have these Flector and Lidocaine patches stuck all over me. I guess I don't know what I'm asking for, maybe something to help out with the Oxycodone detox, maybe someone out there that knows of a Pain Physician in my area that will appropriately prescribe Narcotics for a patient thas does not abuse them. I never ever abused my Narcotics, I always took them exactly as prescribed and had some quality of life. This whole going "clean" and attitude against the evil narcotics I just don't get. I am about to lose my mind.
Thanks for listening. please respond.
-Clashboy:(

[Kira]

Sorry you're having such a hard time finding doctors to listen. I really don't know what to say other than that it sounds like it really sucks. I'm afraid of that happening to me, too. Actually my pain doc told me last month that she's leaving in Dec but that I can just see one of the other docs at this clinic... and I'm afraid, even with that, that they're going to screw with my meds because they don't understand how much this hurts.

I'm on opiates for pain but it's kind of the opposite of you, mostly long-acting with occasional/smaller doses of short-acting. I wear a 75 mcg/hr fentanyl patch (long-acting) and take 1-2 5mg oxy IRs every 4-6 hrs as needed, usually no more than 3-4 per day but up to 8 per day when I'm having a bad flare. I also take baclofen for spasms, which does help some but mostly just with the actual tightness, not so much the pain. You said they have a problem with the high dose of IR meds... could they switch you to an equivalent dose of long-acting meds? I've also heard that the different opiates work on different receptors, so some work better for some people than others just based on their individual receptors. For me, for instance, MS Contin didn't work well but fentanyl patches did. I have trouble with IV dilaudid but do good with equivalent doses of IV morphine (during hospitalizations for rhabdo). The only other thing I take for pain is a bunch of ibuprofen, but you have to be careful with that because too much can mess with kidney function and our kidneys are already at risk from the rhabdo.

I'm not sure what to say about the supplements and stuff, because I don't really mess with any of that stuff other than the carnitor & CoQ10. There was a while a couple of years ago when I had basically the whole vitamin aisle in my pill box, but didn't seem to help and cost a lot of money, so I backed off.

One thing I've been doing that does help me is I started doing IV fluids w/ glucose myself at home once I got my port this summer. I have a lot of autonomic dysfunction and the extra fluids mostly help with that, but we're hoping that it will help me have fewer/milder flares if I can be more aggressive with starting the IV D10 as soon as I start feeling a rhabdo starting. It doesn't seem to do much (short-term) about my muscle pain & weakness but does help a lot with the autonomic symptoms, and is good because I can't tolerate much oral intake these days thanks to a broken GI tract and lots of vomiting. I was pretty much always dehydrated, which is not good with mito... plus I was pretty much always in a fasting state, which is horrible with mito. Now at least I get some glucose & fluids in me, at least on bad days.

The only mito doctor I know of down south is Shoffner in Atlanta. He did my biopsy that gave me my dx, and also found our family's mutation via a research study. But he's pretty busy and I don't know how well that would work for long-term follow up. Plus he would just refer you to your PCP or pain docs for pain stuff. He told me to do CoQ10, carnitor, and creatine... avoid fasting/dehydration... aggressively treat triggers (fevers, infections, etc)... do IV D10 (10% glucose) during flares & rhabdos... etc.

If your doctors don't understand the need for glucose in a mito patient, then they really don't understand what mito is. That's scary. The glucose is a fuel that we can metabolize easily... feeds right into the Krebs cycle. We can't tolerate fasting well because our mitochondria are bad at making energy as it is, and they do worse when we don't give them enough fuel. A lot of people with mito have trouble using fatty acids, which is what our bodies do normally between meals and overnight. That is also what our bodies burn when we don't have carbs available to use. Some people with mito are the opposite... bad at burning carbs (like people with pyruvate disorders).

Dr Korson (at Tufts in Boston) is active in the Mitochondrial Disease Action Committee and is a well-known mito doc. His clinic put a Clinician's Guide about mito on the MDAC page (at www.mitoaction.org (http://www.mitoaction.org)), and it gives a pretty good overview of taking care of mito patients for PCPs & others. The pain section just says that they should aggressively manage your pain but doesn't say much about it... might be nice to at least show them that YES this HURTS. It does address using fluids w/ glucose, especially during flares.

I'm so sorry you're dealing with all of this. If your pain is worse than normal, have you had a CK checked? I know you have a reason (decreased pain meds) but any time my pain is that out-of-control, I need to at least make sure it's not rhabdo. Believe me, I know how much this can hurt and I wish you didn't have to feel like this.

[Kira]

One thing I thought of after re-reading your post is that it seems weird that your pain doc sent you to the naturopath. I'd be wary of taking all of those supplements until your naturopath actually seems to know what mito is. To me, it seems like nutritional changes can really affect mito in both ways... make you feel a lot better OR make you feel a lot worse. Even though they're not technically drugs, they can still be pretty potent and I just feel uneasy messing with my metabolism unless it is something where we know how it works and how it's supposed to interact with my disease. Not that I'm totally against nutritional changes... just think you need to do it with the guidance of someone who really understands the intricacies of broken mitochondrial metabolism, and it sounds like this guy doesn't get it.

I see a nutritionist at my biochemical genetics clinic. She just sees patients with metabolic disorders, though not all mito. The only thing we've really done is the more mainstream mito cocktail supplements and then changed my diet around so it was small, frequent meals with lots of complex carbs and minimal fat (trying to give my mitochondria a more steady source of glucose/fuel, plus I've got problems with fatty acid oxidation so avoiding fats). Also, if your symptoms get worse in the early morning, have you tried making yourself eat something in the middle of the night to avoid going into a fasting state overnight? I have to do that. For people who have trouble with this, it also is supposed to help to eat something high in complex carbs right before going to sleep. I know it won't help the pain in the short-term, but couldn't hurt and is simple enough.

The other thing that kind of stood out as a red flag about your current pain docs is the injections. Maybe you have another reason to need injections/nerve blocks, like spinal pain or actual nerve pain... but with mito, it's weird metabolic muscle pain and my pain doc has always said that the injections wouldn't really help me. They talk about pain clinics where the doctors are "needle jockeys" who over-prescribe injections because they get reimbursed well for procedures. I don't know. Something about that place just seems sketchy.

Is there a teaching hospital nearby? Or a major children's hospital? The bigger hospitals and children's hospitals often have genetics clinics, and those docs will at least know what mito is and will hopefully be able to guide your other docs. Even if it's a bit of a drive, might be worth it. I only go to the biochemical genetics clinic every 6 mos or so now, plus more often if I've been really sick. Maybe one of your docs from Colorado could refer you to the genetics folks. Also neuromuscular docs at MDA clinics. The MDA website has a list of their clinics by state. Mitochondrial myopathy is a covered MDA disease so they should at least know what it is. Neither my biochemical genetics or neuromuscular doc is very aggressive with pain control, though, and I don't think I'd be able to get them to prescribe my pain meds. They'd just refer me back to the pain clinic.

Sometimes palliative care clinics do good pain medicine. Palliative care does symptom control and isn't the same as hospice... meaning you don't have to be in the last 6 mos of life, just be a sick person. If you could get a good palliative care doc, they could help with pain management.

Okay enough babbling. It just is hard to hear that they're treating you so badly.

[Clashboy]

Kira

I could not tolerate the Fentanyl, I had a negative reaction to it; so, they kept me on the 20mgs of Methadone for long acting pain care with the Oycodone. I know I am a high level of Oxy; however, my Colorado Doc was not overly concerned.
The ND is also a PhD in Science and I was referred to him by the Pain Doc. First month cost me $1000.00 for this Xymogen stuff which is suppose to help with inflammation and etc. I feel like S%$t. I can hardly get out of bed and this has been going on for two months.

[Clashboy]

Dear Kira, Brad and Riverdog

Basically, this is why none of you have heard from me. I've been so ill due to the titration off of the pain meds. Apparently, because I now live in Blue Ridge Mountins; i.e., the Appalachia region, all Doctors are afraid to prescribe Narcotics because of the Oxycontin (Hillbilly Heroine) scandals. Kira, I remember the Fentanyl gave me headaches; however, maybe in reflection, I did not stay on it long enough. I've tried to get an Appointment with the MDA clinc (which here is in Spartanburg, SC) but they were full for the month of September, and October and I have to call back to try and schedule for November.
I've had more stability from the nerve blocks but no pain relief at all. It's like my legs are slighly asleep but the pain is excrucuiating since titrating down off the long acting (Methadone) and now elimination of the Oxycodone. You are exactly correct, it is muscle pain.
Years ago Kira, I went through a remission and was exercising 2 hours a day combination of running and weight lifting. No meds at all except 900 mgs of Neurontin. I believe what you have said in the past is correct with regard to aerobic activity helping some Mito patients; plus, you add the Endorphins and you feel great. However, since having this three year relapse, I can't exercise and if am afraid to do too much because I've had the rhabdo flares.
I think my plan is going to be as follows:
I am going to call my Pain Doctor in Colorado on Monday and insist he locate a Pain Physician or Palliative Care Doc in the area that understands Mito. He tried to refer me to a pain doc who refused to continue the pain meds and that is how I got to the Anesthesia Pain Doc. I could continue to see my Pain Doc in Colorado but would have to fly back every two months by law. Which I might just do if he can't locate someone who understands Mito pain and prescribes accordingly. He does because he had one other patient in his career that had it. I am ready to retry the Fentanyl and hang with it longer than I did before. I too was on 75 mcgs; however, like I said it caused headaches and some vertigo. i am thinking maybe the idea of a Fentanyl patch will be more acceptable than sticking with going back on Methadone or Kadian.
I am going to stop seeing the ND PhD in Science guy - he had a hair analysis done on me and then told me I was allergic to all the foods I mostly eat.
I am going to see the Anasthesia Pain Doc and let him finish his blocks - he has not done my back and I want to see if that will assist with less back fatigue.
I am going to contact the MitoAction Group and see if there is any Doctor in the area that comprehends Mitochondrial Disease and controls pain as a backup.
My family is so antidrug (sisters, parents), they don't understand Mito and the pain it generates. They think only Cancer patients should be on opiates. I'm just not going to tell them when I am back on the protocol that allowed me to have a life.
I would love to hear from Brad about the Xymogen products the ND has me on and the hair analysis. I know Brad is the expert of us all on supplements and can research better than me regarding finding the naysayers and the upsayers re: products. I can't afford $1000 a month. This guy says he has mito patients but I don't know if that is true.
I never in a million years thought I would move here and not be able to continue to use a protocol that allowed some semblance of a life. But, by reaching out to you, I feel motivated to do something about it rather than stay in bed for going on two weeks because of the pain... and withdrawal.

[Kira]

I don't know what to say other than I'm sorry that it sucks so much. Really, really sorry. I know how much this hurts and wish I knew of someone in the area that could help.

If the fentanyl didn't help, what about others? For the long-acting meds, there's the stuff you've already listed (methadone, morphine/kadian, fentanyl) plus long-acting oxycodone (oxycontin), oxymorphone (opana ER), and then stuff like suboxone. I don't know why but the pain docs seem to feel more comfortable with higher doses of long-acting meds than with frequent (but equivalent) doses of short-acting meds. Then there are other more aggressive options like implanted morphine pump that pumps continuous low-dose morphine to your spine... need lower doses to get equivalent pain relief because it's directly going to the nerves in your spine.

I think that a lot of doctors don't understand how anything that's "just muscle pain" can possibly hurt so much or so often. Yes, it's muscle pain, but it's very different than any kind of muscle pain that a normal person will ever get. I've encountered the same kind of attitudes in my family members and some of my doctors that you're talking about and it just makes this whole thing hurt that much more to have people act like you're either a junkie or a baby. They just don't get it.

My mom has had breast cancer and colon cancer, both were in her lymph nodes and required chemo, surgery, plus radiation for the breast cancer. So definitely a "real" cancer patient. And she didn't have much pain at all from the cancer itself... from the surgeries and from some chemo complications like mouth sores, but not anything major. That's not to say that some cancer patients don't have terrible pain... but not all cancer hurts, and there are a lot of us with diseases besides cancer who hurt a lot. But somehow society has this weird idea that cancer patients are the only ones who should be on opiates... like that is the only disease that makes you deserving or something.

I really hope you can find a doctor who gets it. I am so thankful for my current pain doc and I don't know what's going to happen when she leaves in Dec.

[Prop1]

Hi Clash,

Nice to hear you're still with us. I wish I could give you some worthy help, but my life sucks right now. My PCP still thinks he can fix some of my autonomic issues, namely low testosterone and low thyroid. To that end, he has me trying herbal supplements since the prescription drugs made things worse. The herbal stuff is making me worse as well. Between the pain and fatigue, it's a miracle I can deal with my father's Alzheimer's and put on a happy face while encouraging my son as he tries to get through Marine Corps Boot Camp.

So regarding herbal fixes, if the prescription stuff doesn't work, the herbal stuff will probably have the same results. It probably works real good if you're healthy. :rolleyes:

For doctors, try the Research Triangle in the Raleigh-Durham area. It's loaded with all kinds of university research facilities of many different disciplines.

I'm convinced treating my form of mito is like pumping nitro into an old Volkwegen Beetle expecting it to perform like a 600 hp Porche. It's impossible to make the mito do what it can't do.

Hope you get things sorted out soon, it sucks being us, and sucks even more when the pain never goes away.

[Clashboy]

Brad,

Sorry to whine when you too are going through some "opportunities." The challenges you are expressing sound horrible as well.
I wanted to let you know that I have the low testosterone thing as well and wear these stupid Androderm patches. They have raised my testosterone level, but i still feel the same. In addition, I think they give me hot flashes that are very uncomfortable. They have since the beginning of me using them.
After herbals, I started with the gel and that was just a pain in the *** and did not raise my levels. Getting used to the testosterone supplementation is very very difficult. At first, I was very aggressive and crabby/moody. Now all I get is the hot flashes but my levels are in the normal range. Of all the medications I am on, I hate the testosterone thing. I don't think it has improved my "mood," improved my strengh" or much of anything. I tried not wearing the patches and the hot flashes got worse to the point were I would awaken 5 to 6 times per night. Right now, I get 2-3 hot flashes a day, By hot flashes I mean the profuse sweating uncomfortable "want to come out of your skin."

The herbal method of attempting to raise my testosterone was horrific as that was attempted first and made me feel absolutely terrible, vomiting, vertigo, itchiness at night.

I guess if you have to get your testosterone up, ask your doc about the patch or the shots and you will have to tough it out for about two weeks before your body adjusts. Just lock up your guns. I'm serious - testosterone is extremely powerful and messes with your mood for the first couple of weeks.

To both you and Kira, I decided to start taking the Methadone at 5mgs bid and I feel much better. I think the Docs titrated me backwards, they should have got me off or at a lower level of Oxycodone. With the Methadone, I will easily be able to go down on the Oxycodone as today I am only going to take 90mgs max, keep that for 5 days and go down to 75 etc. I have enough Methadone to keep me comfortable until I can find a different Doctor.
Kira's advice was right on.

I really feel for you on this testosterone thing. It is the worst med I had to adjust to ever and I still hate using it. I think if you can start on 5 mgs or lower of the Androderm you will more successful; however, know you'll be depressed, anxious and could be a bit testy -aggressive. Warn those around you. I just think it is a better route than those herbals. I'm getting sick just remembering those. Let me know.

[Clashboy]

Dear Kira,

I want to thank you for taking the time to help me re-think what I need to do for myself. I have been very confused by the Doctors here and the transition has not been easy for me. You re-instilled in me the fact that I have to be more assertive in telling my Doctors what is effective for me. I will never get may family to understand that I need some type of pain medication stronger than Ibuprofen (which I take as well). They don't seem interested i all about my disease, not taking the time to learn about it. They just want to preach to me how bad narcotics are and "how different I am on them." I am no differnt on narcotics, I'm just happier because I am free of pain. Anyway,
This week I start being assertive to find Physicians that understand and are willing to take care of me the "right way." I should not of stayed away from you and Brad for so long. I am sorry.
-Matthew (clashboy)