After 3 years of my pcp trying to treat my pain and numerous visits to specialists, I went to a Pain Center....not so sure that was a good idea. The first visit was in the last week of April. I was impressed! The doctor did look younger than me but maybe that would mean he is up to date on Fibro. He informed me that the combination of meds I was on could have been lethal (100mg tramadol 3x a day, 40mg celexa daily, 50mg elavil daily + others not related). He said I was at risk of seretonin syndrome. Anyway, he took me off of the tramadol and put me on a very low dose of methadone...2.5mg 3x a day. Which scared me to death until he explained his reasons for choosing that med. I tend to develop a tolerance to traditional pain meds. Oh yeah, I also take 300mg gabapentin 4x a day. I was nervous about not only starting this new med,that happens to have a bad rep, but not taking the tramadol anymore was also making me nervous. The first few weeks went by and I thought this was it "I finally found something that just might work!". It wasn't quite enough but the doc had said this dosage is very low and we may need to come up a little. I believe 5mg twice a day could be it. Next visit, I'm excited! I think we are so close to getting me comfortable and I will talk to the doc about going up slightly and I can start to get active again!! Well, I get called back. A girl comes in with maybe two papers and asks me what am I hear for.....? So what? You don't know why I'm here....sounds a little strange but o.k. I tell her my WHOLE story, expecting a doctor to be coming soon. She starts ranting about being on the methadone. Tells me I should be on Lyrica,Savella or Cymbalta. Why doesn't she know I've already been on all those? Yes, my other docs have informed them plenty. She leaves and another girl comes. She asks " What are you here for?".....really? I tell her everything including the fact that I'm close to comfort but not there yet. Well, she don't want to change anything. So she writes my script and tells me she has to go find a doc to sign them and I can go....? I ask if I'm seeing a doc today....no, maybe next time. Are you kidding me? I waited a half of an hour for a doc I've never met to sign it. I left so upset I couldn't see straight! So, yesterday I go again. New doctor, but a doctor, he asks "What are you here for?"!! Once again, I go through it all. He asks me 3x if I'm there for refills as if he hadn't heard a thing I said!! Then he tells me "you have to want to get better" & "you're not going to find a magic pill". Now I know he wasn't even listening. Does he really think I WANT to hurt this much? Does he know a cure to fibro the rest of us don't know about? I want nothing more than to get better!! I pray every night that I WILL get better! I come to find out there are 7 doctors, 2 physician assistants and you never know which one you'll see! I wouldn't have a huge problem with that if they'd all read my records and get to know me just a little. Am I asking for too much? Evidently! Needless to say.....nothing changed! They just want to give the script and move on to the next. I really liked that first doctor. He was so informative and actually listened to me. Now, I don't know what to do. My family doc doesn't want anything to do with pain management and neither does my rheumatologist! Any suggestions? Anyone else been through this "pain center" nightmare? Thank you to those who read this and listened to all of my venting.
I've been to a pain center before and it was nothing like this. I'm not even sure we talked about meds back then. Instead, I received cortisone shots directly to the joint. Tried it 5-6 times, didn't work. I'm going to a new pain center, because I no longer live near the old one and this time they're going to try to cauterize some of the nerves, I believe. Again, no mention of meds. But then again, I'm going to them for pain in my SI joint, which they believe is related to arthritis in my back mainly, rather than the fibro (we shall see.)
My suggestion to you? Find another pain center if you can. One where you see the same doctor consistently. You have every right to see a doctor who pays attention to your needs and who familiarizes himself/herself with your chart. I find the comments "you have to want to get better," and "there's no magic pill" to be highly offensive and patronizing. I know I'd be fuming if my doctor had told me that. I think you deserve a doctor who'll show you some caring and compassion and who'll help you MANAGE YOUR PAIN.
Hope, I no longer go to Pain management, my GP takes care of me, along with a Rheumatologist and a Chiropractor.
I have noticed there is such a turn around of staff and partners...Well, you already told the story.
Sorry you had to go through this, just listen to that voice inside of you!
That bad, huh?
Now that you mention it, I DID see a different doctor each time I had the cortisone injection to the SI joint. And it never worked.
It will be interesting to hear other's pain management experiences...
I went to 5 PM offices, the only place I only went once was Johns Hopkins, every other was like a revolving door, and the partners seem to chance continuously!
I did schedule another appointment with them and they said the first doctor I seen should be there that day. I am going to look around for another place to go in the meantime. I guess they have another center and that one only has one doctor and one p.a. The doctor there happens to be the one I like but it's an hour away from home. I don't drive so going that far away is.....well, complicated. I am still furious about that ignorant doctor. That is the worst I've ever been treated!
Hope, (beautiful name )
I am sorry you had to go through this. I hope you can find a PM doctor you can see on a regular basis soon!!
I know that I am fortunate. My Rheumatologist tried all of the "normal" firbro meds on me and when they didn't work as expected by her and me, she put me on Vicoden.
I still take the fibro meds : gabepentin, tramadol, flexoril, and Ibuprofin but when it gets really bad I can take a Viocden.
Problem is that the only way for me to have a good day and get things accomplished is when I take the Vicoden.
I know it is habit forming and I only take it every 4 days due to the risk of addiction. However, I will take it if I have a day that will be quite busy for me too.
I don't know what to say to my Rheum Doc when I see her next in August.
Do I tell her the truth that that I only feel NORMAL and PAIN FREE is when I take the Vicoden?
I don't think she will see me as a drug seeker who has a habbit.
When she did perscribe the Vic she told me that at any time the office could call, ask me to come in, and see how many pills I had left and such. Which is completely fine with me. If that would make her trust me more...
I just think that we are so unfortunat. We have REAL PAIN and can not get the meds we need due to people getting pain meds who just want to sell them or get high...
Have any of you gone through this and what was the outcome for you ?
Do you think I should be honest with my Rheum Doc about how I feel when I take the Vic? And how I feel when I don't take it?
Thanks for any input.
Have a great gentle day
Gemm
Gemm,If it were me I would be honest with your doctor. I do understand why doctors are so afraid to prescribe pain meds these days but that is one of the reasons we should have a good relationship with them. I would think if they get to know their patients then they could "weed out" the ones that are just looking for a "fix". I'm not sure why but Rheumatologist only wanted to run a million tests on me to see if I have any auto-immune diseases. In the process of all the testing they did find that I also have sciatica, mild scoliosis and osteoarthritis in my mid-spine. But no auto-immune. So I'm not sure if she will treat me for fibro. I really liked her but she talked as if her only job was to look for auto-immune. The pain center did tell me that they can and will do pill counts randomly. They also took urine from me on the first visit but not since. I too agree with this...whatever it takes to trust me. If they would get to know me that might help too!
Hi Hope,
I was all excited when a pain management center came to my state and I made an appointment but half way through the interview they told me they would not accept my insurance. The out of pocket was $1,500.00. So that was the end of that. I did some research and found a fibromyalgia specialist in the rheumology section of a local hospital. I had read the fibromyalgia research studies he had done over the years. He said he did need a payment ($300.00) but it would go to further research, so it seemed worthwhile. He even asked me if I wanted to participate in some research projects. This was great - a doctor that respected me and wanted to learn from me! Yeah!
He gave me a quetionnaire that was very thorough and he explained that every fibromyalgia patient was unique. I was already on elavil. He put me on zoloft and recommended seeing a physiatrist. These are actual doctors that supervise the work of a physical therapist. They have gone to medical shool. He also suggested cognitive behavioral therapy.
The zoloft got rid of my back pain, arm pain and neck pain. My memory was improved. Two years ago I was able to manage my pain through consistent gentle exercise. I managed to pull a muscle and took 9 months off but I am back to the gentle exercises. I think it is fair to note that my experience with physical therapy was considerably improved by an Orthopedist's instructions. He saw my cat scans, xrays and really listened to my complaints.
For those that are in New England I recommend Dr. Don L. Goldenberg at Newton- Wellsley hospital .He is a rheumoltologist and he is accepting new patients.
Hi Hope,
I just discovered that the Fibromyalgia Network ( you can google them) offers free referrals for fibromyalgia doctors in your area. They do not mail the information. You have to mail them for a request.
He has also written a book based on his work and it is available through Amazon.com. It is Fibromyalgia: The last chapter
Dang, this is a weird coincidence but my pain management doctor just referred to Dr. Goldenberg. I'm so close to the place I could easily get there but I'm sure my meager insurance would not be accepted there. But it's a GREAT referral, dozer, so thank you!
Gemm, I would proceed cautiously. The first thing I would tell your doctor is that you only take Vicodin every four days, to avoid addiction. And that you are aware of and respectful of the power of this medicine, and don't want to abuse it. THEN I'd tell her that you've tried other meds and this one is the one that cuts the pain, the others do not. I'd explain that you want to be able to function properly at work and being pain free is integral to that.
I know, it's maddening that drug abusers have made it so difficult for those with true pain issues to access pain meds in a manner that best suits their needs. I'm sorry that your pain is so bad and I hope you can get your Vicodin.
Hope, your experience with a rheumy mirrors mine. And he didn't even want to be bothered with the auto-immune tests. He didn't seem to want to be bothered with me at all because I had "so many issues."
I guess the pain centers have to be sure that they're not enabling patients who just want pain meds. I can't for the life of me understand why anyone would want the addictive pain meds for fun, as they just make you dopey and drowsy and don't do all that much for the pain (for me.) As tired as I get on Lyrica, it was much worse with the addictive pain meds. Who needs that? I want to get better, not be snockered into the next world mentally (And that's how it affects me, without much benefit.)
Hi Hope,
I would not say it is a bad thing for her to constantly look for autoimmune, knowing how long it took for them to find mine. It is a very long and difficult process, and a Rheumatologist is the very best qualified to either diagnose, or better yet, rule out any autoimmune disease.
My Rheumatologist is also an Internist, and a University professor, he described Fibromyalgia as a condition, not a disease. He said that if you took a lab monkey, severely injured his left hand, did not treat the hand, that after a while, the chronic pain would change the brain and it's perception of pain, until every place you touched the animal, he felt severe pain. He said the only way to treat the Fibro is to find the cause of the pain.
It took that explaination for me to understand. On that visit he told me that I did have fibro, but the real diagnosis was Psoriatic Arthritis, Secondary Sjogren's and Raynaud's.
I am ever hopeful that you do not have ANY autoimmune diseases, but that perhaps you understand a bit better, I know he helped me.
I hope that you can be well soon,
SK
Worth checking out if this Rhemuatologist you have an appointment with does not work out, but give him a chance, this all takes time for them to unscramble.
Hi,
When I was diagnosed with Fibromyalgia no one knew any one that was vaguely familiar with it. I think it is great there is any organization that will actually point you, refer you to a specialist in your area. I am just wondering if you noticed my earlier post about fibromyalgia Network helping patients find someone that is familair with it. The rheumatologist that I saw was not at all like the rheumatologist I had seen in the past. His whole career is about fibromyalgia.
Petunia,
You are welcome. I understand the financial aspect. At the time I had a GP who did not even believe I had it even though I explained I had another doctor treat me successfully for 8 years. I am very lucky that i do not have any other ailments and I believe that is what makes this whole thing so damn difficult. It is hard to determine what symptoms stem from what ailment. I think having so many people put in their thoughts on this site is wonderful.
That is great info, did you post a discussion?
GREAT suggestion, SK. It's worth a thread of it's own. No, I don't think I realized you'd posted this info, Dozer. Thank you!!!