Thursday, June 14, 2012

Great and encouraging pain management appointment!

(Sorry, I know this is really long, but it's worth it!)
Tuesday I went to a new pain management doctor! We've been waiting for this appointment for about 2 months now. Many of you have been faithfully praying for this appointment. Thank you so much! I know you're anxious to know what the plan is.

About 8 months after I was diagnosed with Lyme, I started seeing a pain management doctor at Children's hospital. All they did was put me on Amitriptyline which is an old antidepressant that is used for pain and sleep. It is the only thing that has really helped me sleep. And it helped my pain. I didn't see the pain management doctors at Children's for very long since the Amitriptyline was helping. I'm still on that medicine and it still helps me sleep most of the time!

Since then, I haven't really needed just a "pain management" doctor. My pain has mostly been controlled with general medicines such as Loritab or Tramadol. But this bone pain that I've had since the beginning the April has been very intense and so different than the "normal" pain I've had since I got sick.

So my primary care recommended that I see a pain management doctor. I'm so glad that he did! At first I was nervous. Going to a new doctor is very scary. You have to explain everything from the beginning again, and wonder if they'll believe you or question you or your diagnosis. I was also worried about what they would say since we still don't know the exact cause of the bone pain. But Wednesday went way better than I expected!!

We left our house at 8 Wednesday morning to get there for my 8:15 appointment. We walked in and were greeted by the ladies at the front desk wearing their Thunder shirts! We were wearing ours too of course since it was game day. That started everything out great!

We only waited a few minutes in the waiting room before being called back. The nurse took my vitals and then explained what would happen in the next couple hours.

The PA came in and went over my history. She was so nice!! We went over everything from the beginning. She never once questioned the fact that I had been diagnosed with Lyme, and she seemed knowledgeable of it. She never asked where I got bit by the tick. She listened to everything we said. Also, she seemed to know about the treatments I do in Nevada. How amazing! She was so encouraging and easy to talk to. We told her that she seemed to know a lot about Lyme, and she said that she was a sleep doctor before becoming a pain management doctor. She said that she saw lots of people with Lyme who had sleep problems, and that they see people with Lyme for pain problems. She said she definitely doesn't know how to treat it, but she knows the damage it can do. We told her about the alternative treatments I've done and she was totally okay with that. She actually was very happy that I'm doing those.

She talked about the depression that comes along with chronic pain. She said, "it's okay to be broken because there is only One who is perfect and whole" as she pointed up to God. She said that if she was 19 and had been in pain all the time for 3-5 years, she would not be happy or in a good mood. But she said not to let the disease become you. That's the important thing. It's okay to admit that it's hard, but you have to stay above it.

We also went over all the medicines I've tried. Once we had gone through most of my history, she laughed and said, "so the thing we need to know about you is that you are so not textbook"! We said, "no way! I like to make things difficult and challenging". We all laughed.

She said that given my history and the examination that she did, she thinks it's possible that I have obstructive sleep apnea. All the pain medicines and sleep medicines could be causing me to not sleep well since the pain medicine also suppresses your breathing just a little because it relaxes you. She said it's nothing to worry about, but if my sleep doesn't get better with the new pain medicines, we should look into that. She reminded us how important quality sleep is to manage pain and she doesn't think I'm getting that. I totally agree. So we'll watch what happens with my sleep. She said that the doctor will probably want some overnight testing down the road if it doesn't get better. But that's not our priority right now.

Once we went over everything, she went and got something called the Alpha-Stim microcurrent therapy. It's similar to a TENS unit, but they see better results with this treatment. It can help pain, fatigue, anxiety, nervousness, and almost anything from what it sounded like. I really don't know much about it yet, so if you want to know more then you can google it until I learn more! The Alpha-Stim was a little hand held machine with two wires that she clipped on to my ears. As she turned it up, it felt like little pin pricks and then I felt like I was on a boat. She said she could see my head moving. That's all normal! So we turned it down a little and then I couldn't feel anything! I think I had it on for about 45 minutes. I didn't see a difference, but she said sometimes it takes several treatments. So we will think about trying a few treatments of that.

She went to talk to the main doctor about my history and then they both came back in to discuss the treatment plan. The doctor walked in and was also wearing his Thunder shirt! He said that he is positive that I have fibromyalgia. We always knew that was a possibility, but he confirmed that. He said that they might want to try another medicine for that later, but he only wants to do one thing at a time with me since I'm so not textbook. That is fine with us! We don't want to overwhelm my body anymore.

He considered doing a pain patch, but said that with it being summer, he thought pills would be better so that I can swim and so that I won't have to worry about it falling off if I get sweaty. So he started me on constant extended release morphine.
The oxycodone that I have been on since the bone pain started has helped, but it's just a roller coaster because the medicine wears off several hours before I can take more. So with the extended release, I take it every 12 hours and it's constantly giving me medicine. He also is giving me oxycodone for breakthrough pain. So if the pain gets bad and I need a boost of medicine, I can take the oxycodone as needed.

They said their goal is to make it to where I can live life normally despite the reality of whatever is going on physically. I told them that I've tried to wean myself off of the oxycodone a few times to see if the pain was better, but the pain is still bad enough to need it. I also told them that in the mornings, I wait as long as I can without taking pain medicine because I know it's not good to take. But that causes the pain to be harder to get under control. He told me I need to take the medicine. I need to be able to enjoy life and be my age again instead of sitting at home because of the pain. He said no one wants to take medicine, but we do what we have to do, and right now you need to take this. We will make the most out of the situation that we are given. I won't need this forever, just for a while.

They also recommended several supplements to take. They were very happy that I'm already on Vitamin D. I love that they want me to try non conventional treatments too!

On the summary page that they gave us it says,

"Must accept that pain will likely never totally go away and therefore:

  • Learn to adjust and pace activity
  • Must learn it is "okay" to be broken
  • Must find meaning and purpose in life despite brokenness 
  • Must not push activity beyond capabilities" 
They also recommended reading the book "Kitchen Table Wisdom" by Rachel Remen to help find meaning in everyday life. 

I love that these doctors are just as much wanting to help the mental and emotional parts, not just the physical. I love that their goal is to help me actually live life despite whatever is going on. I am so thankful for these doctors! 

I go back in a week and a half to see how the medicines are working! Thank you for praying!!!!


  1. I have been reading your blog for awhile and wondered if you ever tried high doses of mega antibiotics for Lyme?
    I have an (internet) friend who is being treated this way for her Lyme but your treatments seem alternative (other than pain medicine). Did antibiotics not work?

    Since you have been treated for 3+ years I realize that you may have-but the page about your story isn't working.

    and thank you for spreading the word about this awful disease. I made sure to get a preventative treatment when I was bit in April-all because I read your blog.

  2. Oh wow, your doctors sound incredible! I am so glad you have such an amazing team looking after you!

    Victoria, you are, as always, an inspiration. Thanks for sharing your story :) x

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  4. Dr. Kumar specializes in Pain Medicine and Physical Medicine & Rehabilitation.
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  5. Can you tell me who the pain management Doctor you went to is? My daughter has chronic Lyme and I need to find someone.