Pain Clinic - Not Happy....

Hi All - I also posted this on the fibro board but thought I'd post here as well in case I can get some more feedback.  Thanks!

Not sure if you guys remember me but I posted a while ago about how I was finding it hard to find someone to prescribe hydrocodone for my fibro, that along with Zanaflex is the only thing that seems to help. 

I only took, at the most, one a day, when I got home from work and it helped me function.  Believe me - I am not looking for drugs to get high, just want to be able to live a hal-way normal life and go to work every day so I can survive.

My Primary went on early maternity leave and her "successor" would not continue with her prescription so I have been to 2 rheumatologists, the ER and a new primary care.  The second rheumotologist suggested accupuncture but I just can't afford it.  My husband was in a car accident back in March and hasn't worked so we are struggling to pay our ortgage and for the meds we both need.

This particular rheumotologist that sent me for accupuncture is very nice.  He originally prescribed Tramadol but I can't take that as it makes me so dizzy, I can't stand up.  He could not or would not prescribe the hydrocodone.  He even said that he could tell that i was not someone who would abuse drugs.  He also cautioned me against taking Lyrica or Savella as they are forms of Gabopentin, which I had a problem with about 10 years ago.  I became suisidal after about a week and a half of taking it.

So I suggested a pain clinic.  He thought it was a great idea and told me - in sort of a roundabout way - that they would be able to prescribe the hydrocodone for me as he couldn't.

Well, the long awaited appt was last Monday.  I had kept a pain diary for 2 weeks, had typed up a couple of pages telling about the oset and history of my fibro.  The nurse spent quite a while with me and asked me what had worked for me in the past.  So I told her, a combo of hydrocodone and Zanaflex.  And I told her about my issue with gabopentin. Well, then the doctor comes in, he was so cavalier about my condition!  He said, what's with this suicide thing?  I was so shocked that he was so rude!  He then suggest I try Lyrica, and I told him my reasons for not wanting to try it.  I also have a severe panic disorder and I do not want to add anything to my mix of meds that will give me any other side effects.  I am funtioning and working now and can't afford to mess that up.  The hydrocodone doesn't give me any lasting side effects and doesn't interfere with my other meds.

Well, he did up my Zanaflex to 2 before bedtime, so that was great and has helped but he said he would not prescribe hydrocodone and prescribed Lidocaine patches.  He told me to "put them where they hurt" - Honey, I hurt EVERYWHERE!  Does he have a wet suit made of lidocaine?  He then proceeded to tell me that sometimes Fibro goes away!  Really?  You are a pain doctor and this is what you've seen in your practice?

He wants me to come back in a month to see how I'm doing.  I already paid this guy 40 bucks to insult me.  Not to mention that he and the nurse were giving each other little looks during the whole time.

I called the rheumotologist the next day, told him what ahppened and asked him if he would prescribe for me and he said, "I can't.  Unfortunately, you'll have to play the game with this other doctor.  Go back and tell him that what he gave you doesn't work and then maybe he'll prescribe."

Frankly, I do not want to go back to this insulting and unfeeling man, pay him 40 more dollars and still not get what I need to make me feel better.

I can barely move and NOTHING is helping.  I have a feeling that he wouldn't give me the scrip because of the suicide issue I told him about.  This happened 10 years ago, I was on a medication that can cause suicidal thoughts and they went away when I went of the med.  I do not see this as a problem.

Really, what is the issue, WHY can't I find anyone to help me?  I am SO tired and sick and tired.  I am now starting to look like a drug seeker.  I have never done any illicit drugs in my 52 years.  I barely took an aspirin until I was 28 years old.  Why is the medical community making it so hard for me to get help?

I feel like Elaine on Seinfeld when her chart was marked "diffiduclt" and every doctor she went to had access to it.

Sorry, just needed to vent.  Thanks for listening!

I have the same problem with lidocaine patches....that and they irritate my skin, as well as the feeling of lidocaine in my bloodstream makes me feel like i've been injected with liquid plastic, a very odd and "toxic" sensation.

They do wonders, for short periods, suppressing the pain of my sacro-iliitis. But they can't fit/stick in a location that works for my worst localized pain in the *front* of my pelvis, and frankly that's too close to certain structures/nerves I really don't want to numb even though they carry a fair share of that pain.

Plus: as you've said, I'd have to wear a full-body lidocaine suit because my pain is spread out over almost every joint in my body. Particularly places with a high density of joints that patches won't fit/stick on, like hands and feet and knees and elbows.

Lidocaine patches are really meant for topical use, such as with shingles....they aren't really intended to penetrate very far past the skin into muscles, joints, or deep nerves.

Sadly, your doctor is being bluntly honest with you. There *is* a game involved in getting "controversial" meds like opiates from most doctors. And unfortunately there are times when honesty/frankness will get you nothing but trouble, no matter how good your intentions or how responsible you are with your meds. Docs will do everything possible to discourage you from getting opiates or any other meds they consider "potential trouble" for their practice.

Docs are business people first, and compassionate a DISTANT second. If it's even on their list, which is a rarity.

You can't use words like "suicidal" with a doctor, no matter how true or reasonable your related point about GABA-acting drugs like Lyrica or Neurontin (Gabapentin) is. They'll label you a "trouble patient" and be even more risk-averse in terms of prescribing you anything that could ever make them look bad if you had the slightest trouble with -- or someone even merely accused you of having trouble with. The facts are of little consequence to the doctor here. It's all about perception, reputation, perceived risk of drama, and perceived risk of malpractice insurance cost hikes/legal entanglements.

The really sad thing is that you probably gained nothing by telling the pain doctor that you've had that specific problem with Gabapentin....you could have phrased it more benignly, something like "experienced intolerably bad side effects and no discernible benefits" would have sufficed.

The sad fact is, if you aren't extremely cautious in what you say to your doctor, excessive honesty and frankness can get you in all kinds of trouble while giving you absolutely no benefit in return. That we have to self-edit is unfortunate and can in some cases lead to not getting the most from the advisory roles of our doctors....but it's a fact of life as a chronic illness/pain sufferer.

To be blunt, I think you're lucky that your rheumatologist is so up front with you and so relatively understanding about you saying some of the same things to him. Of course he's shirking his responsibility to help you control your pain in a reasonable manner....as most specialists do, including "pain management" docs....but at least he's being straight with you about what it's going to take with other docs to get what you need.

Don't get me wrong. I'm not advocating dishonesty, per se. I'm advocating selective honesty. You have to choose your battles, and avoid certain "hot button" words like the S-Word. My 10-year illness has left me thinking suicidal thoughts -- even though I would never follow through because I am determined to endure my sufferings as long as humanly possible to stick around for my family -- on hundreds if not thousands of horribly painful and bleak days. But I've never used that phrasing with any of my doctors. I use other terminology to describe how difficult it has been and how I am often not sure how to endure it despite having some of the best coping skills/tools anyone could hope for....but never the S-Word. I know that would result in nothing good.

Honestly, I think that it is a completely different thing to have "suicidal thoughts" only while on a problematic medication short-term than to report it from situational depression that has no clear physical basis. It's also completely different to think them because you're going through an extremely difficult long-term health drama than to be thinking of offing yourself because you broke up with your girlfriend/boyfriend or something like that. One situation is temporary and can be fixed by changing your life, getting your love back or finding a new one....with an untreatable/incurable disease that involves vast suffering and constant fear of getting worse, it is an entirely different animal.

Docs are getting more and more paranoid about meds that are in any way "controversial" or likely to end up getting them in the newspaper because some patient of their was irresponsible with their medication. Soma is a major victim....I got it for years from my primary, but now he's absolutely unwilling to prescribe it (and seems to have some confused ideas about why it's bad....he thinks it's metabolized into Demerol [meperidine], a rather undesirable opioid molecule....when actually it's metabolized into meprobamate, a completely different molecule that is generally harmless in normal doses). There are any number of others.

If you end up finding no other solutions for your Fibro pain....look into Low Dose Naltrexone (LDN). It's a very promising for pain as well as for many chronic conditions themselves; it has potential to be an actual treatment, if not an outright cure, for many underlying conditions rather than just another band-aid to help us cope with the symptoms.

I'm glad you got a little giggle out of my lidocaine wetsuit Elenor - humor is how I try to deflect from my pain - sometimes it works and sometimes it doesn't.

Exitwound - I hear you - my problem is that I'm extremely honest to a fault. My husband has a prescription for his broken neck of 100 oxycodone. I could be taking those but they are nto my prescription and I think it's dangerous and dishonest to take someone else's prescription. So I guess that proves, in one way that I'm not looking to "get high" - which in actuality - I hate! I have spent my panic ridden life trying to get away from that feeling - which I associate with my panic attacks. I but now it's out there with that doctor - so I'm pretty much out of options. Why doesn't the FDA worry about people selling these drugs on the street instead of the people who really need it. Yes, there are unscrupulous docotrs out there but obviuosly, I haven't found one yet! LOL - Sorry - there's my sick humor again.

Better get on with my day. Thanks to you all! Suzanne

Suz,
I found your lidocaine wetsuit, funny...I can't tolerate the lidocaine here as it get too hot and I get sick
Heat and those patches do not mix good...it's 108 f with heat index today...
Anyways I hope you get a low pain day, soon...
(((((((((((((((((((((((((((((((((((((((((((((((((Suzboop))))))))))))))))))))))))))))))))))))))))))))))))))))))))
keep us posted....
Sometimes finding a good PM doctor can be hard, Maybe look at getting a different doc...

OMG!! When I hear stories about Dr.'s NOT prescribing pain meds to someone that actually needs them I want to find them and make them hurt and NOT give them anything for pain.... Why do some Dr.'s do this? I guess I've been so lucky with finding a great PM Doc and I don't understand what the problem is.....

Is it just a certain part of the country? Is it certain Doctors? I have never heard so many stories of PM Docs that are so unwilling to give pain meds. What are they so scared of? The DEA? Unless these Docs are already under investigation there is no reason for them not to help you....

I wish there was somthing I could do to help you....

Me