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Living With Fibromyalgia - Online Support Group

Doctor refuses to treat because i'm on pain meds?

Zunanne that’s an awful predicament. I cant imagine having the stress of medical insurance on top of everything else. I truly hope with all this Brexit nonsense in the UK we don’t end up with a similar system over here. (Sorry to go all political!)
If I stopped working we’d lose our house as disability payments can no way pay enough to support a mortgage. The stress of these financial burdens cannot be good for our fibro either!
In regards the medication…yes its essential for me. I wouldn’t be able to function daily without it. Plenty people give me the rest and pacing advice but it’s just not feasible with two kids and a job. I hope you find a doc that supports your needs for the meds.

That a bit of an extreme action on a docs part. It is understandable however as the body of evidence that opiates/opioids not only do not help FMS pain and can make it worse grows with every new study. Frankly with the new oversite and state regulations limiting how much and how long opiates can be prescribed, I do understand physicians reluctance. The ever-increasing regulations and oversight of opiate use, has led to a lot of anger and resentment in the patient community—especially from those who’ve been refused a drug they say helps them function. Docs in primary care simply don’t have the time OR experience to deal with it.

However this stance does NOT consider that FMS is known to overlap with numerous other conditions, and it may be that people who get relief from opiates are seeing a reduction in pain from something else, which also helps quiet FMS pain. This is why pain management for FMS is now being refered to Pain management specialists (make sure they are fellowship trained and not a washed up anesthesiologist or burnt out neurologist)

There are only three drugs approved for use in fibromyalgia: pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella).

There are others used off label including anticonvulsants and antidepressants

FWIW Tramadol is becoming very hard to get a hold of. Its not the safe non-dependency/non-addictive alternative it was thought to be. Its predecessor Stadol taught a lot of lessons that were ignored when Tramadol started being handed out like candy.

TJ

Sounds to me like someone’s office staff really doesn’t care to deal with insurance paperwork that might be complicated. If you’re really sick it means a lot of paperwork. Most likely they probably think you’re an addict looking for a fix. Anything can be addicting even sugar. But to just toss people on the side? I don’t think you needed to see that doctor.

Tj, Thanks for responding. I think this is likely the case with me. I received my FM diagnosis first. That diagnosis was hard fought for and made by a rheumy at well respected hospital in Seattle, Wa. The PCP in my small town had never treated a case before and we kinda stumbled along, learning together. It was probably two years before they put me on tramadol for the pain that wasn’t being helped by the gabapentin. Then 2 years ago they switched me to Lyrica and my FM pain was reduced greatly. So I went off the tramadol. But I was still having pain in my joints and suffering terrible bouts of tendonitis, so I went back on it. About 9 months ago I started looking for answers for that pain, and mostly because of Admin Seenie’s encouragement, I received my Psoriatic Arthritis Diagnosis.

So I suspect that my PCP had unknowingly been treating PsA pain all along, which did helped with my overall well being. I am still in the process of finding a biologic treatment for the PsA that works for me. But until I do, I’m still in pain and need the meds so I can work. I can get them from the rheumy but they are 3.5 hours away and I have to take a full day off work to go up and get a paper script. I really need someone closer. So I’ll keep looking.

I sure appreciate everyone’s feedback! I don’t post often, but I come everyday to see what others are up to.
Stacy

Have you joined our PsA community yet? Lots of folks there with the dual conditions…


TJ

TJ, of course I recommended Zananne join us at PsA! I recruit the best!

Seenie

ROFLMAO :smile::smile::smile::smile:

TJ

This is so frustrating on many fronts. One angle that I haven’t seen in this thread is that several care providers have lost the right to prescribe the pain meds. This can happen if they have “too many” [how do the regulators determine how many is excessive?] patients on pain meds. Some of my physician friends can no longer see patients on pain meds even if they did not prescribe them.

Zananne, I think now that you’ve got a diagnosis from a well-respected expert in the PsA world, you won’t have a problem finding another rheumatologist who will be willing to carry on with your PsA care. The hardest part is getting the diagnosis.

The whole issue of opioid meds is so terribly difficult: it puts doctors in a really difficult position, and leaves patients out in the cold, suffering. Do the PCPs know why it is you are taking the tramadol? The problem, of course, is that it can take quite a long time before a Psoriatic Arthritis patient finds a treatment that works, when a PsA drug trial takes at least three months. And in the meanwhile, pain meds are one of the few options available. Have you discussed prednisone with anyone?

It’s so frustrating, and I’m sorry that you are suffering because of rules that are intended to solve a problem that you aren’t part of.

Seenie

That is very true. EMR exchange has identified at risk patients. All too often patients visit several docs seeking pain meds, what they don’t understand is every script is reported, every request is reported and every fill is reported (and entered into a national Data Base.) It makes perfect sense.

TJ

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Wondering if this gets to the state level and varies by state…people who have not shown addictive behaviors should still be allowed low levels of pain meds…

Every patient is not the same adthis should only be between you and your dr.

This was my main issue with my prior PCP. We had a 6.5 year relationship. They know I am not an addict. But when they saw my score on the questionnaire, they clearly didn’t take that into consideration before they sent off a RX for Narcan to my local, small town pharmacy. They weren’t willing to go to bat for me, and say, “I don’t care what she scored, I KNOW her!” after a pretty long, and I thought, good relationship. Now each and every time I go to my pharmacy, I am treated like a junkie. And obviously when looking for a new Dr. this is going to keep coming up. Not sure what I’ll do when my current script runs out. Nearest pain clinic it about 1.5 hours away. I am calling my Rheumy tomorrow to see if they will prescribe pain meds for me. But I’m not that hopeful, as they mentioned before that it’s not something they typically do, prefering to let the pain clinics handle it. And they are so far away.
Thanks for letting me vent…again. :slight_smile:

I have heard of other people saying that about pharmacies…the pharmacy should be neutral , and have no opinion …it should be between you and the dr. Period… in our area , there are many pharmacies, and if any attitude was shown at one i would surely change…that is not their place to me

Vent away! :boom: That’s:woman_judge: how we can survive this malady!

As a clinic director before retirement, I understand the issue from both sides. it sounds like the PCP is following current regulations related to prescribing pain meds. Even pain specialists must record the scores and order the Narcan. They can lose their license to write prescriptions and/or license to practice medicine. Several physicians I know have lost the rights to write pain meds and are on probation with risk of losing their license completely. If they are the PCP and some other provider prescribes the meds, it puts him in a rough situation – if your score is “high”, does he report the findings or risk not reporting and potentially being culpable? While you are frustrated, please be mindful that most medical professionals are equally frustrated. The legislators are the ones who have the power to change the systems. :woman_judge:

Perhaps someone in our group could draft an eloquent letter with our concerns that we can copy and send to our representatives? :pen:

Regards fellow FM comrades!

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To make it worse, the federal regs are overlaid with state regs that vary from state to state and if that weren’t enough State medical societies/associations hoping to stem governmental oversight, became proactive with new practice guidelines muddying the waters yet again. AND THEN to pile on even further recent research has inconsistently confirmed (inconsistent only in time/dosage) that hyperalgesia is not only NOT rare, but can happen in days to weeks, consequently what prescriptions are being written are for much lower doses and for very short periods of time including post operative analgesia. It is inconsistent in time of recovery from hyperalgesia some say months, some years some say the damage is permanent though some improvement can occur.The sad thing is that while the USA uses 90% of the pain meds in the world, the USA has not figured out how the rest of the world is doing it. (pain management) and doing it comparatively well.

My personal belief is the billions of dollars being awarded to the states in the law suits involving then manufacturers of the “safe” drugs and the lies they used to sell them that lead to this situation instead of bloating the state treasuries to be wasted on pork projects by the politicos, should be used to fund academic research into effective analgesia and programs that works for chronic pain patients.

TJ

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A little update - I saw my Rheumy on Thursday. Had a great appointment. Spent nearly 2 hours with his nurse practitioner. I felt heard for the first time in months. She was kind and professional at the same time. She updated him and then we sat down and talked all together about how to manage the pain long-term, (trying a new med for the PsA, continuing with PT), and the pain meds so I can work in the short-term, (they wrote me prescriptions for 3 months of tramadol, my anti-inflammatory and gave me a referral to a pain clinic). I left feeling more hopeful than I’ve felt in quite a while.

I know none of this seems specific to my fibro, but I also I know that when the PsA is bad I experience even more nerve and muscle pain. The two feed off each other. So anything I do to relieve the psoriatic arthritis pain will help the fibro too.

So at least for the next several months, I can continue seeking a new PCP without the cloud of what to do about the pain meds hanging over my head.

Just wanted to thank all of you for your thoughtful responses and your great information and advice. I feel so grateful that my sister found you all and invited me to join.

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That’s good news! It feels so good to be heard! I’m glad you’re feeling hopeful!:heart:

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Zananne1, I know you wrote this Aug 29, but i just logged on and it is listed near the top still! Anyway…my doctor who has been treating me for over 10 years retired! I went in for my monthly visit and was handed my full chart and told BYE BYE dr. is retiring, good luck! Basically THROWN TO THE WOLVeS! Now, I have SEVERE fibro and other issues with both hips and 1 knee being replaced and still need the other. Trying to find another rheumatologist,pain dr was HELL! I went through the same thing including calling PAIN DRs. that my insurance company gave me. PAIN dr. WOULDN’t give pain meds since I had already been on them! I have been on a Duragesic patch and oxycontin for breakthru pain and was literally almost ready to try to buy it on the street somewhere! On the last 5 days before I ran out, I got an orthopedic dr to help me. He gave me the same patches but lowered the oxy (which is fine) as I try not to use them. I am going thru a terrible flare up that just won’t stop for almost 2 weeks now and I have HAD IT!! This illness SUCKS and NOBODY but like minded souls like us understand it!..Unless I can find a dr wh HAS FIBRO…they will NEVER understand it! Just try to hang in…I feel my life rushing by while I lay in bed dozing on and off cause I don’t really sleep, and sitting on the couch cause I have NO energy to go to the store of out with friends. I have literally had the last decade whizz by and wonder WTF is the point of my damn life. I won’t kill myself because of my family but I can say that I have thought about it many times. I hope you find something that helps you. debbie xxx

So sorry you’re having such a hard time too. It is so difficult to find people who can relate to our unique issues and understand our pain. I hope you are able to find a great Doctor who will help you get, and stay, as pain free as possible! There must be someone out there for us, right?

I have fibro and degenitive arthritis all over my body. My doctor is kind of weird about pain meds. I’ve had her for 3-5 yrs but what is going on with the opioid epidemic Drs. are kind of paroniod about it. I even lost my license for several mos because I had knee replacement surgery and I wasn’t getting my medicine correctly so my sister and I raised cane about it especially the pain med so he reported I was hooked on morphine which is not true so I lost my license. Ingot it back but I went through a bunch of hurdles had my doctor’s write to DMV. It’s really crazy what we all are having to deal with this. I hope you find a doctor that is passionate.