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Pain specialist referral...NEED ADVICE! Please :)

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Posted 2/28/2013 11:10 AM (GMT 0)
Ok I need some advice. I'm got a referral to a pain specialist and I can't decide if I should tell him I'm being treated for Lyme or let him "treat" me for Fibro, etc.

I got the referral from my Rheum who went crazy (literally), when I told him I was being treated for Lyme Complex.

I really need help right now, my Rheum cut my medications for pain and muscle spasms way back (in his fit of rage about the Lyme thing), so I'm so afraid this new dr will react the same way.

If I just let him treat me for "fibro" I probably won't be getting adequate relief, and I'm afraid he'll think I'm just exaggerating. But I'm in a lot of pain, pretty much all the time, and I'm taking care of a toddler alone. My husband has been away at work and I have no family that lives nearby. I'm so torn but I have to function, everyday, all day, just to keep up with my son.

What would you guys do?? I want to be honest, but the last time I tried that with my rheumy, it backfired :(

If I choose not to tell him I will be sure to contact my LLMD before starting any new meds and talk to the pharmacy about any possible interactions. I just hate feeling like I'm being dishonest, but I feel like we're being lied to as well, all the time, by all of these healthcare "professionals" that tell us we have this or that but no way, not Lyme disease.

Ugh, sorry this is so long and drawn out. I'm just tired and slightly depressed, and stressed...
Posted 2/28/2013 11:25 AM (GMT 0)
go with being honest.
you cant regret that. (even though its hard to recognize these days)
Posted 2/28/2013 8:23 PM (GMT 0)
It shouldn't really matter if you tell him or not. A pain clinic is there to manage your symptoms, not fret about your diagnosis. The rheumatologist is there to make those kinds of calls and its no surprise he's giving you a hard time, but I don't think you'll need to worry about that with a pain specialist (as long as the rheumatologist hasn't tagged you as crazy or drug seeking). The rheumy is looking to offload you to a pain specialist to limit liability for the narcotics. Any time a patient starts making their own health decisions, it can make them concerned that you may not take your medication exactly as labelled.

You need to be able to clearly articulate what kind of pain you have, where you have it, what activities make it better/worse, how it impacts your daily life and what steps you have already taken to improve the situation and the results.

If you have any objective evidence of joint damage or any other visible symptoms (ie will they be able to see the spasms?), it will make things much easier. There's even some diagnostic testing they may be able to perform to provide a little objective evidence of pain (or physical distress at least). They are trained to sort out malingerers from those in real pain and probably won't have any trouble if you are very honest (about the symptoms at least).
Posted 2/28/2013 8:39 PM (GMT 0)
Thank you Spall! I definitely don't think my Rheumy has pegged me as drug-seeking, I've never asked for more or a stronger dose, just a change in the kind of meds on occasion (due to many med sensitivities). Then again, the way he reacted to me going for that second opinion (to the LLMD), there's no telling. He went crazy. Stormed out of the room.

I sent him a long email and I think I smoothed things over. I actually asked him if he thought pain management would be the logical next step for me (I knew after the Lyme thing he wanted to get rid of me)... hence the referral a few days later.

In the past I've had to downplay my symptoms b/c I have had an ER dr yell at me and say "just take Tylenol", obviously he thought I was drug seeking. In hindsight, they would ask what was wrong and I'd say, "pain, all over". I see why that thought I was doc-shopping, but it was true!!! I had and still do have PAIN, ALL OVER. Ugh, idk why I'm bringing that up...it makes me angry and that does me no good whatsoever and I've got to let it go...
Anyway at least now I know why and I feel like I can articulate and explain much better than before.
Anyway, thanks to both of you guys for the advice.

I will be honest and explain the pain and hope for the best.

Spall what you said about the pain clinic not fretting about the diagnosis, and about not being surprised how the rheumy reacted...

It all makes me feel so much better.

Thanks again Tom and Spall :)
Posted 2/28/2013 11:59 PM (GMT 0)
I'm a bit devious, but here's what I'd do in your position, Lymer- use at your own caution - LOL! I understand though, because I have to be careful of repercussions from docs around here as well. That's why I'm not welcome in most doc's offices any more! Oops! turn

I would go to a couple of Fibro forum and see what words they are using to describe their pain, and be sure that the words you choose to use come from those experiencing the same type and as close to the same severity as you experience, or as close as possible. Then be sure to use those words to describe your pain. Write it down!!

Sometimes we have to do what we have to in order to get the help we need -so don't let that stop you!! I didn't have a toddler to chase around when I was at my worst, but I couldn't even take care of myself at that point either. You need help and you deserve the help, so let them believe you are there because of Fibro pain!!

Just my 2ยข worth!! :-)
Posted 3/4/2013 2:08 AM (GMT 0)
I'm with Traveler. Get the pain relief you need- nobody is living in your body 24/7 it doesn't really matter the diagnosis. I got most of my pain meds from a fibro dx.
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