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[MelancholyMama]

I've been suffering from pain for 3 years now. I've been to multiple doctors such as Family Medicine (Primary), Orthopedic, OB/GYN, Kidney Specialist, Urologist, Chiropractor, Pain Therapist, Accupuncture- the list goes on!  I just moved to a new area, and am having to basically start all over again to find someone who can help me with this pain.  I was referred to a pain management doctor here, but had to wait a month to get in.  He saw me for all of 10 minutes, checked my reflexes which are poor due to my right leg having numbness. I have a lot of pain in my lower back, but the pain/aching is throughout my entire body.  He pushed on maybe 2 places on my body and diagnosed me with Fibro- he didn't even have my 3 years worth of medical records in front of him.  Combined the Cymbalta I was already on with Savella although the pharmacist warned of bad interactions.  I was sick as as all last night taking my first doses- felt my heart racing, felt sweaty, extreme nausea, upset stomach, blurred vision, dizziness, and felt like I was going to pass out.  Even my words were not coming out correctly.  It was so scary, and I should have went with my gut feeling about combining those meds, and was reassured over the phone that I should proceed with taking them even after I told them what the pharmacist warned of.  

As far as pain meds go, I was taking 4-6 percocet per day prior to that before I could get into the pain management doctor. My family med doctor had me on that to help with the pain until I could get in with the pain doctor.  He decreased that to 1 pill per day although I had told him that the dosage on the pain meds were not enough even at 4-6 per day for the pain.  How could this guy diagnose me with "Fibro" within just a few minutes without reviewing my records, and then proceeded to have me take meds that really could have put me in the hospital last night!  I contacted the pain med doc today, and he wanted me to just start combining Cymbalta and Lyrica instead. Um...no.  I can't risk another interaction right now with meds like this.  I made the decision to not see him again, and try to get a second opinion about Fibro because I truly feel that this could be Chronic Pain or maybe even MS that I have been struggling with.  Where to go from here?  How can I find a good doctor who will help me MANAGE my pain while still seeking answers to what it is that is wrecking havoc on my life?  All I want to do is be able to be the wife, mother, friend, etc that I once was.  How have some of you found a good pain doctor in your area?  Also, if there is a resource to find a doctor in specific areas would you mind sharing that?  

When I called my family med doctor back to let her know that I wanted her to handle my meds, etc until I could get into seeing someone else since I was NOT comfortable with the pain management doctor I was told that she could no longer prescribe any pain meds to me due to the fact that she handed that over to the pain management doctor, although I have now told that practice that I do not want to see him again.  So I asked what I am to do about my pain...and I'm basically told I can go to the hospital if it's bad.  What in the world?  My pain is horrible 24/7 and I'm almost out of meds- go figure! Help please! :(  I have a feeling I will be on this forum for a long time to come, so HELLO to you all!

[JadedSweetheart]

I'm sorry I was late to this post.  We've had a lot of members away for various reasons and a lot of new posts.  
I don't know anything about Fibro so I can't tell you how they usually diagnose it.  I do know about chronic pain and dealing with the stress of doctors.  I'm sorry that you are having to deal with the pain without pain medication.  
I got into a similar situation with my PCP.  Many PCPs will not prescribe pain meds any longer than they have to for liability reasons.  Some states have laws that they cannot prescribe pain medication longer than a few months.  
When you say your PM office, do you mean the one that you went to recently and told us about?  If so, I would recommend finding another one, not just another one in that practice but a different one altogether who can hopefully get you in soon.  

I hope you'll stay with us on the forum and keep us posted.  This is a great place to get support for problems with CP and to help others.  I also find that knowing I'm not the only one going through a painful condition and trying to get my life back is a huge help.  It's a great distraction from the pain as well.  I really hope everything works out for you and you get some relief soon!

[MelancholyMama]

Thanks all. I am still in limbo between finding a doctor that can help for the moment.  I am still awaiting a neurology appointment to rule other things out, but it's been a long month of waiting for that to roll around.  The appointment is still another few weeks away. :(

I have been without pain meds for at least 2.5 weeks now, and have been hurting more than ever of course.  The pain, stress and sleepless nights are taking their toll yet again.  I was told a nurse at my PM office that the PM doctor had went on vacation around the time I wrote the original post on here and that he would not be back for 2 weeks.  I asked if there was anyone else I could see in that office (It's a very large practice) and was told that the doctors preferred to keep their patients seeing one doctor. I had just waited a month to see that specific doctor, and for him to go on vacation a few days after my visit with him for two weeks leaving me at a dead end really has frustrated and angered me because I feel at a loss once again. I've felt at a dead end so many times over the past 3 years, and to me it is one of the worst feelings ever! I'm sure some of you can relate to that feeling.  

I've been doing my best to try to push through each day, exercise, and try to "ignore" the pain if that makes sense.  It's just not working as well as I'd hoped.  I want another opinion on Fibro because the pain management doctor who diagnosed me with it only saw me for 10-15 minutes, did not have ANY of my medical records from over the past 3 years other than from my new primary doctor I had only been seeing for a few weeks.  They were still waiting on my records to arrive from my old city.
The PM doc pressed on maybe 5 spots on my body, and not all of those 5 bothered me.  I have read further into Fibro and it is said that there are around 18 points in which 11 need to be bothersome to be diagnosed with Fibro?  Is that correct?  With this guy only seeing me for a few minutes, and not really looking into my medical history the way I felt he should have I just have a gut feeling to get another opinion.  In turn, because my "new" primary doctor sent me to the PM doc their office states that they can no longer help me for anything related to this pain because they basically handed off my care to this PM guy.

I don't think I mentioned some of this originally because I was so distraught and discouraged by everything, but my family made a big move to a new place where we didn't know anyone almost 2 months ago.  So part of the problem is having to deal with the "new" doctors here, and finding someone capable of at least sending me in the right direction for help.

[happyhbmom]

OK, so to your OP- my first call was to the one doctor who I love.  She actually networks a lot with other doctors, and specifically saves names of doctors she wants to pass her clients on to.

My second stop is to those online rating sites- vitals.com and healthgrades.com.  I make sure they have a few ratings.  One of my pet peeves is long wait times, so that's a good place to check.  They also let you check for things like board certification etc.

You can ask friends, coworkers, people in your dirtbike club (kidding), etc.  Who has a doctor that they LOVE.

Once you get a primary care doctor that is really on the job, she should help you do the rest.  For example, my PCP says "don't forget to have everyone send copies of test results here.  This is home base."  Like, what PCP says that anymore?  And she also only refers out to the best.

Does this help?

[happyhbmom]

I hear you about feeling alone when you are trying to find medical care!  When I was diagnosed with Stage II hypertension, my doctor was making a series of really poor decisions, and I was feeling like crap from the meds and not able to get any help from him- so I really do know where you're coming from. I did manage to find my new doctor and turn things around, and you will too!

I wouldn't be surprised if Fibro is a correct diagnosis given your others (CFS + Chronic pain).  Especially if you have the pressure points.

What kind of treatment were you hoping for?  The two meds he prescribed are the meds of choice for the problems you describe.  Or do you just need someone to spend more time with you and explain things more clearly? (nothing wrong with expecting that!)

[MelancholyMama]

Also, the other doctors have made diagnoses before:

Medullary Sponge Kidney
Degenerative Disc in my lower disc (which is at the beginning stages)
Mild Scoliosis
Chronic Pain/Fatigue
PMDD
Depression
Anxiety
Unknown cause of numbness in my right leg
Ovarian Cysts that rupture just about every other month

I've also had the joy of having the Mirena IUD perforated my uterus when they put it in (I know this because of the excruciating pain that they said was just normal when getting the IUD in) which went into my abdominal wall- I walked around with it like that for 3 months before a CT Scan with a urologist found that it looked "off"- Sent me back to my OB/GYN who confirmed it was not where it was suppose to be.  During the surgery to remove it, you could see where it was actually GROWING into my abdominal wall.  Prior to around that time, I always had a super high pain tolerance.  The troubles started soon after with pain..and this was also right after the birth of my second child as well.  (Not sure if it has any correlation with the pain, but I always have to mention it anyhow!)

[MelancholyMama]

I'm sorry- I should have made it a little more clear with the situation with the Savella/Cymbalta.
My Primary doc had me on 120mg of Cymbalta up until last night when I received the Savella to take with it. The pain management doc dropped Cymbalta to 60mg and combined Savella with it.  I did call his office prior to taking the meds last night just to try to confirm that it would be the proper thing to do even being told there were bad interactions with the meds.  So they proceeded to tell me to go ahead and take them, but I really should have trusted my gut reaction.  So today, when I dropped the PM doc, I am following my gut reaction I should have followed before.  As I said to a friend earlier, it's my body, my choice so I'm trying my best to be my own advocate. It's hard...I feel quite alone. Even my husband and I are not on the same page about things which has been hell- causing arguments about money mostly in regard to doctor visits, meds, etc.  I need this forum...so I can have others to relate to for sure!  LOL You are right...I probably should wait until I have the meds before I "fire" the doctor!! Today has been rough...mother nature isn't being kind to me today either adding on the "blessings" of being a woman to my day! LOL
Thank you for your words, and the kind welcome!

[mellie4]

Welcome to the forum.  You'll find lots of support and empathy here.  This board has been a true lifesaver for me.

It sounds as if you're about at the end of your rope ... something most CP patients can probably relate to.  Before you moved, you saw all kinds of different doctors; did any of them have a diagnosis for you?

I'm sorry the PM doctor you saw isn't a good fit for you.  It seems like your situation isn't uncommon; where a primary doctor is prescribing meds, the person gets a PM doctor but finds out they're not a good fit and then the primary doctor doesn't want to go back to prescribing narcotics and you're left with nothing until you can find a new PM doctor.

I've been blessed with all my doctors. Truly, I think we are in an age, especially CP patients, where we need to interview our doctors and find ones that give us what we need.    Unfortunately, usually we're in some sort of crisis and don't have the time or energy to do that.

Maybe you can stick with this PM doctor while you search for another that's a better fit. Personally, I think the best way to find doctors is through referrals from friends.  Oftentimes, when a doctor gives a referral, they have an arrangement or they're within a group.  Nurses are great to get referrals from; they know who's good or not and all the little quirks that may or may not bother you.  (My primary care doctor is with a group but she is the rare case who refers based on what's best for you.   And if there's someone I have the name of that I want to go to, she'll make it work, regardless of the insurance requirements.)

When I was diagnosed with fibro, they did do a brain MRI to rule out MS because a lot of my symptoms at the time were consistent with that. I take Cymbalta now for nerve pain, though I'm not sure how much good it does.  I tried Lyrica in the past and it caused me to gain 15 pounds in two weeks.  It did help the nerve pain a bit, but not enough for me to deal with that kind of weight gain.  (I've lost a lot of weight since my divorce and I worked hard to get it off; I don't want to put it on again.)

I also had tried Neurontin but I had a terrible time with it.  I had bad side effects where I couldn't think clearly; the wrong words would come out and I constantly felt like I was in a fog.  But everyone is different and a lot of people get great results with Lyrica or Neurontin.

How long were you taking the 4-6 Percocets?  Did you have any trouble when you decreased to one a day?  I'm wondering if you need to worry about withdrawals at all??

Being a chronic pain patient, no matter what your diagnosis is, is a hard journey.  Even with great physicians and family support, it can really take a toll on you.  Having this forum available is wonderful as you can chat with people who really understand all the aspects of CP.

Best of luck.  I'm sure someone else may have some suggestions for you.

[happyhbmom]

Cymbalta and Savella are in the same class.  Cymbalta and Lyrica are not.  

Listen, as people with multiple chronic illnesses, we have to be our own advocates.  Part of that means being SUPER picky about our medical care.  That starts with the PCP- if your PCP treats you like that, you need a new one ASAP.  You NEED a PCP who will be your advocate as well, and help, not hinder you.  Having a PCP who throws you to the wolves is not helpful.

Having a PM doctor whose judgement you can't trust is another no-brainer.  

I was there earlier this year.  I called a doctor I adore (my ob/gyn) and got a referral for an GP.  I switched immediately and then had her coordinate the rest of my caregivers.  Voila, a team!

That said, you also don't want to be the person who overreacts.  I doubt you were on the verge of death last night, overlapping cymbalta and savella for one night (I take 120 mg of Cymbalta a day and am still kicking).  The appropriate response would have been, when you got the warning from the pharmacist, to wait and call the PM doctors office in the morning and make sure he realized you were on Cymbalta when he prescribed Savella, and give him a chance to double check the interactions and discuss it with you.  That's part of being your own advocate- not just blindly following your doctors.

When you are your own advocate, suddenly doctors don't have to be nearly as perfect, because you're checking and double checking everything you do.  You're coming home and checking interactions anyway, because it's your body, and who wants to take the risk?  (and when your med list starts growing, you find mistakes are inevitable).  

Because, truthfully, I think the Cymbalta and Lyrica would make you feel better.  But now you've got to go find a new doctor instead without the benefit of feeling better while you're doing it, which is kind of a pain :(

So hugs.  But next time, wait until you have the meds before you fire the doctor!