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Living With Fibromyalgia - Online Support Group

Need A Recommendation - I Need A New Doctor Desperately!

#1

Hey all. So, I’m currently on vacation in Europe. While the trip has been great and all so far, I’m going through my medication WAYYY faster than I should be. This isn’t the first time either. (Thank goodness I got my refill a day before my trip, or else I might have run out DURING my trip.)

A year ago, I switched doctors. I wanted to reduce the amount of medication I was on for my FMS and try out some alternative therapies. My doctor at the time refused to help me wean off. I was taking - per day - 50mg Percocet, 6mg Xanax, 200mg Celebrex, 4mg Zanaflex, 50mcg Duragesic/72 hrs, and some other random medications “as needed”.

Ever since I started seeing this new doctor in July 2014, I started weaning down and I am now taking - per day - 15mg Percocet and 3mg Xanax. I take 200mg Celebrex as needed for inflammation, usually when it rains (as it often does in NJ).

My current doctor has reduced my medication wayyy too fast and too much and isn’t offering any alternative therapies to help deal with the pain - not even trigger point injections. I was still doing fairly well when he reduced me - per day - to 20mg Percocet, 3mg Xanax, and 12mcg Duragesic/72 hrs, up until Jan/Feb 2015. I’ve told my doctor I’m suffering with my current lowered dosage of 15mg Percocet and 3mg Xanax, but he just wants to keep reducing my medication further - never mind my suffering. When I tell him I’m having a hard time, he says of course it’ll be hard but I need to do it and if I can’t, I should think about switching to Suboxone - a route I’m not ready to take. He doesn’t seem to take into account that before I started seeing him a year ago, I was on these medications for 8+ years, plus some other additional strong medications too.

Since March, I have run out of my meds two weeks early every single month, and he doesn’t seem to care. (February 2015 is when I stopped the Duragesic and when my doctor drastically dropped my Percocet dosage.) For those two weeks when I run out early, I go through horrible withdrawal. My blood pressure and pulse rate go up (and he knows that). The pain and fatigue is unbearable. My ears ring nonstop, until I feel like going insane. My joints hurt - especially my knees and ankles. My ankles, lower back, and glutes feel like they are on fire. My head feels like it is going to explode. My brain fog becomes worse. I can’t even focus on mindless tasks, like doing laundry or loading the dishwasher. I get extremely depressed during that time due to a lack of pain relief.

While I am grateful to my current doctor for being willing to wean me off, I need a more caring doctor who will be in tune with my (body’s) needs. I need a doctor who understands that sometimes it’s not the proper time to cut down on the dose of a medication, or that sometimes it may be necessary to raise the dose back up if we’re weaning down too fast - especially depending on the season and what is currently going on in my life. The cold and the rain especially make my pain worse. I was also actually working again recently when I was getting effective pain relief, but that is now near impossible. This is another reason I really need a doctor who will help me find the right combination of therapies that will help me lead the best life possible rather than just someone who wants to see me get off all pain/controlled medications with no other form of pain relief.

I need a doctor who will integrate alternative therapies - PT, diet, chiropractic, accupuncture, trigger point, biofeedback, etc…I don’t know. Something more than just medication.

I’ve found pain management doctors who use a whole system of integrative medicine, minus any type of medication - pain meds or not. I’ve also found doctors who only treat using medication. I can’t find someone who does both.

I live in Central NJ. If anybody knows of a doctor who uses an integrative approach using medication AND alternative therapies, I’d really appreciate a recommendation. I’m willing to travel up to 1.5-2 hours if that’s what it takes. I have a PPO and my insurance is pretty good. They cover most non-elective visits and procedures, including alternative medicine, no referrals needed.

I WANT TO START LIVING AGAIN!!!

Thanks in advance to anyone out there who can help me with a recommendation for a new doctor!

#2

Hi Tia,

Sorry you’re having such a hard time. What has happened is that you have run smack up against Federal DEA laws that were passed over a decade ago, forbidding doctors to use opiates to detox someone who is addicted/dependent on opiates. That is why your first doctor wouldn’t detox you with the opiates you were taking.

Up until recently, all opiate detoxes had to be done in a Federally regulated 21-day detox program using methadone. Private physicians could not do an outpatient detox from their office at all. There is a bit of a grey area now, and many physicians will do an office-based detox…but they still are not supposed to use opiates. Instead, clonidine and benzodiazepines are used to reduce some of the worst symptoms of withdrawal. And the time period of opiate detox is still supposed to be 21 days!!

That’s what’s going on. Your current doctor has his hands tied by the DEA, as did your last physician. If you can’t tolerate the detox, you might just need to stabilize for now. See if your current doc is willing to stop the detox. Maybe you need to return to your first doc to get your pain back under control.

Hope this helps,
Starr

#3

Tia, I also wanted to address your desire to have one doctor who will prescribe opiates and other medications but also does alternative therapies. You are probably not going to find this. However you are in an excellent position to get both of these approaches to pain management, because you are in a PPO and can self refer to adjunct therapies. The best treatments now (that have been rigorously studied by double-blind studies) are:
-CBT (Cognitive Behavioral Therapy)
-Meditation, specifically Autogenics
-aerobic exercise
-strength training

So you should get your own treatment team together: MD for meds and overall plan, MFCC or psychologist for the CBT and perhaps Autogenics, join a gym for exercising (some personal trainers specialize in working with fibromyalgia!). And some health plans will pay for you to join a gym, (mine does, it’s called SilverSneakers.) Perhaps a massage therapist or hot tub/arthritis pool too. Just run a your alternate treatments by your doctor first.

Good luck!
Starr

#4

Hi Tia, I am sorry you are going through such a difficult time. I am proud of the approach you are taking of wanting a comprehensive treatment plan. As you are aware Fibro is a tricky condition, there is not a “one size fits all” solution. You have to keep trying different things to see what works for you. Even then what works now might not work next year. Starr makes a good point in saying you might not find one doctor that can do all you want but rather several that can work as part of your treatment team. I am sending lots of positive energy and hugs your way, please keep us updated on how you are doing.

#5

Have your tried a naturopathic physician? I think that it is going to be harder and harder to find an MD to prescribe narcotics and any type of "addictive medication"---

For the Xanax you could consult with a psychiatrist and/ or psychiatric ARNP; Maybe something like Buspar or an SSRI might help.

I do not want to be taking any type of narcotic--It's too scary given the heroin epidemic and crackdowns on narcotics. None the less, there are people who truly need pain medication to function. Many people benefit from Cymbalta or Savella and even muscle relaxants.

So sorry that you are in pain--I don't know of anyone in the NH area but your could see if your insurance is willing to pay for a teleconference with a specialist.

Just some thoughts. Sorry that you are hurting.

#6

Hi Tia,

I am really sorry to hear of your withdrawal symptoms and the difficulty you are experiencing with getting opiods. I honestly don't know of a way around it, which leaves people like you living between a rock and a hard place.

I am checking fibro.sites for some doctor suggestions. I have found one list already and will attach it to this piece. If I find any others, I'll include them as well.

#7

Yow, I fell asleep while doing this and lost the link I had. Let me check again:

This doctor looks like he uses an in-depth approach to treating fibro, which my doctor also does:

http://www.drking.org/fibromyalgia_treatments.php

Dr. Podell

Somerset, New Jersey:
53 Kossuth Street,
1st Floor
Somerset, NJ 08873
Tel: 908-■■■■■■■■
Fax: 732-■■■■■■■■

Union County, New Jersey:
11 Overlook Road,
Suite 140
Summit, NJ 07901
Tel: 908-■■■■■■■■

(I personally would steer clear of Dr. R. Paul St. Amand, as he focuses on Guaifenesin and it has been debunked as an effective treatment of fibro. He is not affiliated with the site I have just listed for you.)