Friday, January 7, 2011

Partly Cloudy

My chronic pelvic pain is holding in a partly cloudy weather pattern.   For the past year, my pain has been well managed on a very low dose of sustained release morphine. I also take another medication, Cymbalta to help with the local and centralized nerve pain.  However,  new symptoms have been emerging in the guise of menopausal symptoms, maybe fibromyalgia, or "other".

prairie burn : in a week beautiful grasses and flowers and birds return

I have yet to find a pain management doctor to work with. The ones we have consulted, immediately state that they are procedural pain management specialists. They like to work with the part of the spine that attaches the head to the neck and the lumbar spine, or lower back. When it comes to the part that turns into the tailbone or pelvis, they get insecure, and turf us over to the gynecologists.  Most pain doctors like to do clinical procedures like nerve blocks.  Makes sense to them, right?  Just draw up some medication, inject it, tell the patient it might work, and then bill the insurance company.  No need to have a long, detailed conversation with your patient regarding the nature of the pain and what meds have been helping, not helping, or creating side effects.  And, then they don't have to deal with the cumbersome paperwork imposed by the DEA regulations and weed out potential drug seekers from the actual pain population. 

 We are a labor intensive bunch and low reimbursement units. Hate to break it to you, but we are called "units" when it comes to billing.  

However, it leaves the chronic pain patient without a captain of the ship, and often we get lost in a murky sea of symptoms. Symptoms that often are so familiar to us, but they can still cause us to lose our bearings.  

Over the past several months, I have been having a really tough time during the night especially.  Most of my friends and family have heard me complain of terrible insomnia, hormonal night sweats, fatigue and awakening feeling like I have the flu and totally unrestored sleep.  I talked to several doctors and recently saw a neurologist.  She was very suspicious that I was developing fibromyalgia. She wanted to start me on Lyrica, but I declined and wanted to do a little more investigation. 

Next, I saw a nurse practitioner/naturopath and she felt my symptoms were not classic fibromyalgia symptoms, but she knew they had a varied spectrum. She wanted me to test my hormones and also do a thorough evaluation for many tick borne diseases.  I am still waiting for those results.

In the meantime, I decided to do some of my own personal detective work as I was really getting frustrated and feeling low and defeated.  I started to document my symptoms and record when they were happening and describe them in full detail. 

A typical record would read like this:
04:00 can't sleep. legs ache.  sweating. flu-like feeling. so achey, all over. my whole body is weak. sweaty. muscles twitching. jaw hurts. my bones in my whole body hurt
08:00  feels like I didn't sleep at all.  drag myself out of bed.  take my morning dose of morphine.  Tai chi wakes me up.

3:00 tired, hardly did anything today. bones starting to ache.  want to take a nap.  take a vicodin 7.5 mg.  hour later feel better.

I started to notice this pattern of weakness and pain at certain times of the day.  It also coincided with when the morphine might be wearing off, or reaching it's nadir.

In the meantime, my husband finally found a pain doctor who actually works with pain patients like me.  She told him that she'd be happy to work with me and was concerned about my quality of life.  Ahhhh...  I love it when they use those quality of life sentences.  I'd like to have a quality life. She told him that even though the morphine is dosed twice a day, that it runs out faster and she often has to prescribe it 3x a day in divided doses.  That is what I figured out on my own, and it has already been helping.  I am looking forward to this visit.

I wanted to share this because it is likely a very common problem and it can happen for many reasons.  When we get comfortable with our disease and our doctors get comfortable with us, sometimes we stop taking the fresh look with "new eyes".  It is so important that when we see our doctors that we are very specific with telling them how our pain is now, compared to how it was at the last visit. Get detailed with describing the quality of your pain so you can help your doctor help you. All my doctors, including me and my husband were going down the fibro track until I really stopped and dissected the information and analyzed it by taking a step back and looking at the data.  We have to be our own scientists sometime.  The other thing that happens is that when you have been on a med for a long time, the doctor may get complacent about asking you how it is working.  With any neurologic drug, especially a narcotic, it is paramount that you let your doctor know if you think you are responding differently to a med than you did in the past. Or, if you have new symptoms, help your doc out a bit and actually say, "could this new symptom be related to my meds?  Let's talk about each of them".  Again, these are examples of advocating for your self, and actually helping your doctor help you.

Finally, as I am now bringing in a 4th doctor into my team, I need to make sure that all of her notes go to my other doctors so they stay up on my care.  She'll need to send copies to the gynecologist, my pmd, and the neurologist.  And I expect them to know the latest about me when I go for a follow-up appointment.  Finally, I will also share some current literature with them so they can learn a little more about pudendal neuralgia and pevlic floor dysfunction.  That team approach means that sometimes I coach them.  Even when you are at your weakest, try to take charge and be your own best advocate.  Try not to get burned in the process.

I'm hoping partly cloudy, becomes clear blue sky here quite soon.

Peace, Healing, Humor,

 my lonely fish are so hungry and they want to dance so please stop a while, feed them and play


  1. So well said Cora!

    When I read your journal entries, it just hits me like a ton of bricks that, yes! that is narcotic withdrawal--I know it WELL! Makes me sad that I didn't put it together on my end...arggg! I'm sorry! I am so happy though that you connected the dots and am looking forward to your visit to the new pain management doc...sounds like she's one of the good ones:)

    Much love, BB

  2. Yes, good advice. No matter how good the doctors, we have to partially guide the direction of our interactions with them by posing questions, avenues of inquiry. ..

  3. thanks so much for your acknowledgement and encouragement, anon and Bon-
    Will update after I see the pain doctor

  4. This is an amazing post Cora...It very much resonates with me. And since I have an upcoming doc appt it reminds me about some leg work I have to do. I've already collected all my medical records for him, but I need to collect some medical literature for him as well.

  5. Tome Annie, bring 'em the bleepin' Tome

  6. Cora,

    Your post was awesome, and hit the nail on the head when it comes to pain specialists. As you know via the HOPE forum, I recently went to one who gave me Fentanyl and I stopped it after 1.5 days. She mentioned something about a hypogastric block. No, no, NOOOOOOOOO I will not do it! No more blocks.

    You are so right that as soon as they get to the level of the spine that innervates the pelvis, they want to pawn you off onto a gyno or uro. Help! Is there a pain specialist anywhere in the usa that deals with Chronic Pelvic Pain?

    A's Mommy