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rheumy referral to pain specialist, what to expect?

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Posted 3/1/2013 7:27 AM (GMT 0)
hey guys,

i'm fairly new here but i'm hoping for a little advice. I've been a member for quite some time now, but my doctor suspected some other conditions so fibro was on the backburner. Now I'm back to the Fibro Dx and so here i am again.

My rheumy has just referred me to a pain specialist and i am wondering what to expect.

Any suggestions on how to prepare? i always keep a list of my symptoms, but i tend to freeze once in the office at my appts and forget important things. I also struggle to explain things due to brain fog, but i have pain that is often severe and quite debilitating. I also tend to downplay the severity of my symptoms, i guess its my pride getting in the way. However, I have a toddler to care for and need to be functioning. I would love to return to work as well, I've been out of work since my son was born (tried to go back numerous times, but i just can't hack it at the moment).

anyway, so this got so long, just here for a little support and possibly some advice. thanks for listening!
Posted 3/1/2013 7:36 AM (GMT 0)
Lymer,
What an excellent question..I too am being sent to a pain specialist and would like to know what to expect.
One thing I saw you do, is write down your symptoms..and stuff..one thing I satred to do with my dad, was I got a small 5 subject notebook for doctor appts. I split it up with one section for each doctor, took notes t his appts. (med changes, all that stuff), and also wrote down anyquestions we had for them, and their answers..
Good luck on getting back to work..hopefully we both get the answers we need!
Posted 3/1/2013 7:49 AM (GMT 0)
mrsbugzy,

i was just replying to one of your posts, and about to reply to another! It seems we have a lot in common at the moment. I saw what you said about being allergic to many meds. I have the same issue, but for me its NSAIDs, I can't take any anti-inflammatory (and i have a lot of inflammation). I take hydrocodone as needed at the moment, but its not doing much for me to be honest. But try not to worry, i worried too that i would run out of options because of all of my medicine allergies/sensitivities, but I have found things that help.

I hope your doctor and pain specialist are patient and helpful and you'll find the relief you need soon! :)
Posted 3/1/2013 11:02 PM (GMT 0)
i actually just posted about my experience with pain management in another thread. i'll just copy and paste my response here:

i see a pain management doctor. when i was first diagnosed i took gabapentin but after a while it stopped working for me. i take lyrica which is helpful for the little stuff but after a while my doctors didn't know what else to do with me so they told me to see a pain management doctor. i've seen a couple before, for headaches, and had really bad experiences with both. i was hesitant to try again but the doctor i see is amazing. i took nucytna extended release for a few months until my work benefits ran out and i was waiting to be approved for cobra. nucynta without insurance is over $300 which i can't afford right now. i saw my p.m. doctor last week and asked him if i could take something that comes in a generic form for right now and he said the only thing even remotely similar is morphine. so i take 15mg of extended release morphine twice a day and it barely works. i'm sure a higher does would help more but i just want back on nucynta! i'll be going back on it ASAP.

my p.m. doctor also did a medial branch block in my thoracic spine to stop the transmission of pain from my degenerated discs. i have no pain there now at all. it won't last forever but i would definitely do it again. it's hard to find a pain management doctor who is willing to work with you on prescriptions and also procedures, most of them are either needle happy or pill mills. i hope that you are able to find one in between like i did.
Posted 3/1/2013 11:08 PM (GMT 0)
captainstefanie, thank you!!

Funny thing, I got a call from my rheumy's office today saying the pain specialist they were referring me to does not accept my insurance. So there's a entire week wasted! So I had to call my insurance company myself and find a pain dr that accepts my ins. When I called the rheumy back to tell them I found someone (as they had asked me to do), they said I'd have to call back Monday.

It's just so frustrating, there's no telling how long the wait is to get in to the initial appt. In the meantime I've got a toddler to care for by myself, and I'm miserable on top of that!


Ugh sorry for my rant. BUT the goods news is these positive stories about good pain management dr's are very encouraging. Thank you all for sharing!

Btw, what is nucynta? Never heard of that one before!
Posted 3/1/2013 11:24 PM (GMT 0)
My aunt who was a die hard chiropractor enthusiast. She swore they could fix everything. But she now goes to a pain clinic. They give her a shot I don't know if its her neck or back and says its the best relief she gets. She's not a medication type person. She doesn't believe in pills unless you have an infection and need antibiotics.

So to me it sounds scary but it may help. I don't have one here but I would definitely check it out if I did.

((HUGS)) good luck!
Posted 3/1/2013 11:33 PM (GMT 0)
i can't really explain what nucynta is but here's the drugs.com link for it:

http://www.drugs.com/mtm/nucynta-er.html

my pain management doctor said that almost all of his fibro patients have positive experiences with it!
Posted 3/1/2013 11:44 PM (GMT 0)
bakomom I used to be somewhat anti-meds too. Before I got sick, I would tough it out if I pulled a muscle, had a headache, worked with the flu, etc. I was a distance runner, I was always pushing myself.
But now, pain management seems like a must for me to be able to function :(

captainstefanie thanks for that link. Is it a newer medication? I'm very surprised I've never heard of it, especially considering my rheumy had a hard time finding something that helped me, but he never mentioned this one! If its helping so many fibro patients I truly hope more Rheumy's will become educated about it, as soon! :)

I really hope you can get back on it soon. Have you tried calling the pharm. company that makes it? I've heard of people qualifying for discounts on certain drugs that way. Idk about this one in particular, but it's worth a shot!

Also, I have a prescription discount card that helps me with what my insurance won't cover...it's called Rx Relief I believe. I honestly don't even remember applying for it, but it showed up in the mail one day, and Walgreens accepts it. If you want to know more about that lmk, I'll get out my card and get you their contact info
Posted 3/2/2013 12:23 AM (GMT 0)
they actually have a program where you can get nucynta for free if you're unemployed and uninsured. it's a long paperwork process that requires your doctor to submit paperwork as well. i actually just found out that my cobra application has gone through but i can't get back on the nucynta until i see my doctor again which isn't until 3/21. i know there are different laws in different states but here in texas they are really strict with schedule 2 drugs. pain management doctors have to be especially careful when prescribing and documenting these drugs so my doctor won't change medication or write prescriptions without an appointment. i think nucynta is a fairly new drug. i actually used to work in a pharmacy and though we had it, we very, very rarely dispensed it.
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