So you want to know what it's really like?

When I tell people that I have a chronic pain condition, the most common reactions are usually, "Oh, that sucks." "I'm sorry!" "Oh, my [insert relative here] has [insert disease here.]" When it comes to living my day-to-day life with pain, there are some people (like my family) who don't understand why I can't just pop an Advil and go on with my day. Others are sympathetic, but really don't know what to do or say.

I wanted to write a post to share about what living with chronic pain is really like, so people might understand a little more.

**Disclaimer: I'm under the influence of muscle relaxers, so hopefully this all makes sense!**

*I'm going to write about the situation that I've been dealing with for the past 6 weeks, but that'll give you a clear picture of what I deal with.*

*GLOSSARY*
   -Soma: A skeletal muscle relaxant; acs on the central nervous system to relax muscles
   -Valium: A benzodiazepine used to relieve muscle spasms; relaxes muscles
   -Percocet: A combination of oxycodone and acetaminophen; relieves moderate to severe pain
   -Tramadol: An opioid analgesic that relieves moderate to moderately severe pain
   -Trigger Point Injection: A procedure in which a health care professional inserts a small needle into  the patient's trigger point; the injection contains a local anesthetic and corticosteroid
   -Voltaren gel: A nonsteroidal anti-inflammatory drug used to treat pain and swelling
   -Zofran: A strong anti-nausea medication, commonly used for chemo nausea

Six weeks ago, I woke up one morning with a HORRIBLE pain in my neck. It felt really swollen, and I could barely turn my head. I thought that I had just slept on it wrong, so I took a Soma and went about my day. A week later and it didn't get any better. I made an appointment with Milah, my primary care provider, and she did an exam and could feel inflammation in my neck. She sent me for x-rays and put me on steroids to see if it would decrease it.

Nothing.

I put my Google Medical Degree to good use as I followed Milah's directions to alternate Soma, Tramadol, and Percocet every 6, 8 hours.

Time went on and when there was no decrease in symptoms, Milah referred me to Dr. Nago, my neurologist. Dr. Nago did his own exam, and could palpably feel knots in my back. He gave me injections in those trigger points in my back in an attempt to block the pain signals and give me some relief.  He scheduled me for an MRI of my neck, just to make sure that I didn't have any bulging discs or some larger underlying problems. He also prescribed me Voltaren gel, an anti-inflammatory gel that I could apply topically to hopefully provide some relief.

At this point, I have all of my medications lined up at home, including a new, stronger, prescription for Zofran for my nausea. The Soma hasn't worked, so Milah has prescribed Valium, a stronger muscle relaxer.

Now, my biggest decisions are what medications to take and when, with one of the biggest factors being how functional I want to be versus how much pain I can tolerate. Sound fun?

Where I stand today


I had a follow-up with Dr. Nago yesterday. My MRI looked good, which he expected. Since the pain is still going on, he's decided to try something new.

My new plan:

• Wean off the Topamax, the migraine preventative that I'm on. Clearly, I'm still having migraines so this isn't doing a very good job. However, if my migraines start to increase while I'm weaning off the Topamax, obviously it's doing something, so continue to take it.
• Wait for the insurance to approve the use of Botox injections in my neck, which should greatly improve my migraines.
• Go and see Dr. Yu at Swedish Pain Center for x-ray-guided injections into my neck for pain relief
• Partner with Milah to see if Maureen (my previous pain management psychologist) will see me on an extremely-reduced fee basis.
• Try adding Lyrica to my daily medications for a month. This should help with my fibromyalgia. If it doesn't work in a month, we can stop it. 

So that's what I go through. Oh, and that's just medically. Add on the stress of job hunting, interviews, and attempting to have a social life.

So please, don't say that you understand, or that you've been there. Unless you live with a chronic pain disease, you really can't understand it. 

If we have plans to go out and do something and I say that I can't because my pain has flared up, please don't think that I'm being flaky. Some days I only have so much energy to do things. 

You can ask how I'm doing, and I promise that I'll try to be honest. Most days I put on a brave face and pretend like everything is fine. But I'm trying to be more vulnerable and allow people to be there for me. If I'm not feeling good, feel free to bring over a pint of Ben & Jerry's and a movie and hang out with me. :)

Finally, another really great testimonial of what it's like to live with chronic pain is written by Christine Miserandino and is called The Spoon Theory. Check it out: The Spoon Theory

That's my life. I may not have bulging muscles, but I'm tough.