Update on my doctor's visits and perhaps a new treatment plan...

[Tricia in TX]

Here is the original post...

I have seen or talked to the new doc 3 times now, and every time he’s tried to put me on prescription pain meds, and each time I tell him I DON’T want to be on pain meds. It is very frustrating. Now that he has all the information from my old doctors, and done a physical exam, and compared all the old info to the new lab work and x-rays he took, he is back to Fibromyalgia. That is funny, because on the first visit before he saw any lab work or x-rays he said he doubted it was that. Fibro was one of the first diagnoses I got years ago. (that was then ruled out by subsequent doctors…)

He said after looking at all the info there is zero chance I have any sort of degenerative arthritic condition. He said I have the best looking hip and knee joints he’s seen in a long time. That’s great to hear, no damage to the joint, but it does not help me get rid of the pain!

I could tell he thought it odd that I was not happy (I was about to cry!) and he said. “It’s good news.” I told him that it may look that way to him, but I’ve been chasing this monster for 17 years and if I can’t name it, I can’t defeat it. I need a diagnosis so I can have a treatment! That’s when he said at this point in the process we move from treatment to managing the symptoms.

I went home and did some more research on Fibro. Things have changed a bit since I was told I had it 10 or 15 years ago. Apparently, some doctors think low serotonin is part of the problem and when Fibro patients are put on a SSRI their pain, stiffness, and fatigue improve dramatically, even in the patients who don’t show any signs of ‘depression’. I thought this looked promising and I’d MUCH rather try a SSRI (never been on one before) than pain meds.

I called the doctor and left a message for his nurse saying I’d like to try a SSRI. She called back with a prescription for ANOTHER pain med; this one more dangerous than the first and harder to get off of. Are you kidding me? So, that was $450 well spent! I am so done with that guy!

I called my GP, who is a lady I like very much and I am sure that if I go in with my research and tell her I want to try a SSRI instead of pain meds, she’ll let me try it. I have an appointment with her on Monday.

I am so incredibly frustrated with doctors not listening.

On the upside, maybe it’ll all be worth it if his pointing back to Fibro caused me to do more research and find the new information about SSRI’s if it ends up working!

Oh Tricia- I can very much relate to your post. I am so sorry your having to go through this, friend! I too have been getting worse these past few years with my Fibro pain.

Jennifer, have you ever tried, or heard of taking a SSRI for Fibro pain? Just wondering if you had any experience with that. You can PM me if you like.

[Rachel Jane]

STINK!

Sorry.

[Heather W]

My mil has had fibro for many years and was successful with some treatment. Hmmm...I'm not sure I remember the details, but it did help her with pain. She took guanifsene (whatever that joint vitamin is) and she has massages to work out these knots in her muscles.

I'm not being helpful, but that was working for a while for her.

[Tricia in TX]

My mil has had fibro for many years and was successful with some treatment. Hmmm...I'm not sure I remember the details, but it did help her with pain. She took guanifsene (whatever that joint vitamin is) and she has massages to work out these knots in her muscles.

I'm not being helpful, but that was working for a while for her.

I did the Guanfacine protocol several years ago (10 or 15) when I was first told I had Fibro. It didn't help a lick. So annoying. Nothing seems to make any difference. It comes. It goes. It stays. It leaves. It really does not seem to matter what I do.

[Tricia O]

I have a lot of patients now who take Cymbalta or Savella for fibromyalgia pain. It's something called an SNRI which is similar to an SSRI. (selective serotonin and norepinephrine reuptake inhibitors)
http://www.mayoclinic.com/health/ant...ssants/MH00067

This is an interesting article on the various treatment options for fibromyalgia, from a respected medical source.

http://www.medscape.com/viewarticle/540128_4

Maybe you can take this to your GP?

There truly are many options for pain management that don't involve going straight to heavy-duty pain meds.
I remember when I first started working in pharmacy fifteen years ago, there was very little information about fibromyalgia.

http://www.mayoclinic.com/health/fibromyalgia/DS00079

http://www.mayoclinic.com/health/fib...mptoms/MY01855

Hope some of this is helpful!

[WendyW]

There truly are many options for pain management that don't involve going straight to heavy-duty pain meds.

A lady in my church has fibro, and she spent a period of time at the Mayo clinic. They have some kind of pain management program that is (I think) about the mental side of living with pain. Kind of like brainwashing yourself not to notice it (?). I'm not sure, but I remember thinking that when she told me about it.

I found a link to it. Mayo Pain Management

It must have done her some good. She's gone from being practically incapacitated to working full time in order to pay for school and going for a medical degree! I rarely see her anymore, and was never close to her, so I don't know if shes done anything else in addition to the Mayo.

[HeatherS]

While I have no personal experience, I know two people who have been on Cymbalta for reasons other than depression. One woman took it for pain in her legs caused by a condition that I can't remember the name of. I have a friend who took it for OCD, I believe. They have both said it is a very powerful drug with horrible withdrawl symptoms you feel even if you've only skipped a dose to two. I'm not saying don't take it, I'm just say, be prepared!

[Darla]

Hey Tricia,
I have dealt with fibro for many years. When I was first diagnosed I took Zoloft and my attitude towards it was that while I wasn't sure if it was really helping the pain - I didn't care. Reckon' it did take the "edge" off.

We lost our insurance at one point so I went off all medications and realized that there was no significant difference in my pain level. I tried Zoloft again but had began to adverse reactions to all medications so had to immediately stop it.

I have come to know what my "boundaries" are and know that if/when I overstep them I will have to deal with more pain. In saying that the things that seem to help me are a nutritious diet that includes a lot of protein, walking, gentle pilates, going to bed early and taking breaks when I know I need too.

So sorry you have to deal with this! I know the frustration of doctors not listening or simply throwing out the next treatment options. My GP listens to me and has been very helpful in dealing with everything.

Blessings,
Darla

[Jennifer Unsell]

Jennifer, have you ever tried, or heard of taking a SSRI for Fibro pain? Just wondering if you had any experience with that. You can PM me if you like.

The only thing I have tried that has been successful for me is a low dosage of zoloft. I take 50 mg per day. When I was first diagnosed in 2003 my internist was actually the one that started me on it and by the time I got in to see the specialist for him to confirm that I had Fibro, the zoloft had lifted some of my symptoms and decreased my pain levels some. It never takes away the pain but it does help take the edge off the pain. Their is a signifigant difference when I am not on the zoloft. I have tried to wean off once and it wasn't pretty. It sounds odd but it seems to numb the pain enough to be bearable however having said that, I still have flare ups where the pain is out of control. The zoloft seemed to calm a lot of my other symptoms too though. The specialist initially wanted to put me on a series of med's but he admitted up front that many of the side affects of the med's could be worse than my actual Fibro symptoms and I didn't want to chance that. Since I had had such a good experience with the zoloft I have just continued on that through the years. The specialist I saw in NC told me that anti-depressents often work wonders on some of the Fibro symptoms. It's not necessarily that Fibro patients are really depressed even, though obviously we can be at times given the fact that we live in pain daily, but it has to do with the low serotonin levels as you said. If you haven't tried an anti-depressent I think it would be worth a shot. I wasn't thrilled at first with taking one but after seeing the results for me, I was more than willing to continue. For me, it's a matter of being able to semi-function throughout each day with the zoloft or live my life in bed each day without the zoloft.

Continuing to pray for you,Tricia! I have added so many of the common conditions that go along with Fibro (GERD, IBS, etc) in more recent years which has thrown other challenges my way. It's soooo hard and frustrating! Praying for you that you can find just what you need to relieve the pain and be able to function as you need too.

Editing to say- just realized that you posted this weeks ago. I am so sorry that I didn't see it before now, Tricia! I check this board often and I'm not sure how in the world I missed it before today?

[Julie in AZ]

My mom has fibro and Cymbalta has been helpful to her. I hope you find some relief!