Sunday, September 18, 2011

What Mitochondrial Disease Means to Me, Part I

Pain.  Did you know that a lot of people with Mitochondrial Disease are in pain all the time?  The neurological system and muscles require more energy than any other body systems.  Therefore, the lack of energy in the muscles cause a lot of pain.  Imagine what you feel like 1-2 days after the hardest weight lifting workout you've ever done.  That's mito muscle pain.

I posted that exact statement on Facebook tonight.  I am doing the same thing on FB that I'm doing here for Mitochondrial Disease awareness week.  I am so honored to see that multiple other people who are dealing with mito reposted, word for word, what I said about pain and mito.  To me, that just reiterates how true it is and how many people are going through exactly what I am.  It is so sad to me, though, that many of those who reposted it are mothers of children with mito who have to see their child in pain all the time.  I am thankful that I am the one in pain everyday, 24 hours a day, and not my children.

As an emergency room nurse, I never truly understood those in chronic pain.  Instead of looking at the patient, I would look at the amount of pain meds on their medication list and immediately form an opinion of them.  Considering that our patients had to tell us what medications they take on a daily basis almost right after they tell us their name, that opinion I formed based on their medication list ended up being my first impression of them.  I didn't take the time to think about why they take all of those pain medications.  I would immediately have a poor opinion of them because they "want to take narcotics".

Well, I have news for the old me, and any other ER nurse out there who looks down on or forms a poor opinion of people on pain medications, especially narcotics...  We don't want to take narcotics to relieve our pain, we have to.

I have tried everything.  I have tried heat, ice, non-narcotic pain relievers, icy-hot, massage, relaxation techniques, screaming expletives, over the counter pain relievers, hitting myself in a part of my body that I don't have pain so I won't think about the pain I do have, and, of course, eating excessive amounts of ice cream and pizza (and a bunch of things that I can't remember).  They all work, but not enough.  When my pain is a 6 on a 1-10 scale, almost all the time, those things just don't do it.

I think if pain was my only problem, I may be able to make all of those things combined work.  However, as you'll see over the course of the next week, pain is far from my only problem.   Fatigue is my biggest problem secondary to pain.  And, as anyone with pain will tell you, pain is always 10 times worse when you are fatigued.  In addition to that, pain can be tolerated well when experienced in short periods of time.  But, my pain never goes away.  I am thrilled if I can get my pain below a 2 or 3.

Pain can be anywhere.  My pain is just about everywhere.  Well, really, it's just in one place... my muscles.  However, muscles are everywhere.  As I can say that I have pain in 75% of the muscles in my body, my pain is bad in just a few places.  Of course, I say "just a few" like it's not that many, then I start to list them off and it definitely sounds like more than "just a few".  My worst pain is in the back of my neck and head which causes a headache all over if I don't keep it under control, my pelvic muscles, upper legs, and butt... oh, excuse me, gluteus maximus.  Every now and then I have pain in my back, chest, abdomen, and upper arms.  That pain is not as constant as the pain in the areas I mentioned first.  You may notice that I walk a bit different than I used to.  That is because of both the pain and weakness equally.

My pain gets worse with any activity, as does almost all of my symptoms.  Because of that, and the fatigue, my pain gets worse as the day goes on.  Evenings and night are not so great for me, unless I am well medicated.  And even then, I am sometimes still in a lot of pain.

I am very lucky, thanks to the recommendation of my mom, to have an excellent pain doctor.  He is my second.  He is caring, funny, and very intelligent.  He even knows a bit about mitochondrial disease.  I don't have to argue to get him to change things because they're not working.  I am not nervous prior to my appointments and I leave there happy.  That doesn't happen very often with doctor's appointments.

My pain meds have been working fairly well as of late.  There are times that they don't work, though.  That's just going to happen.

So, if you are the type of person who tends to judge people for being on narcotic pain medications, please try to change that.  I, as well as many people with chronic pain, am not trying to get high.  I am only trying to decrease the amount of pain I'm in so I can go on with my life as best as possible.  And this is coming from someone who's been on both sides.

With each of these posts this week, I will be posting a video about mitochondrial disease.  Enjoy!


Rachel said...

Very informative post! And it's so great that you have a good pain doctor! I think we all know too well how detrimental a bad doctor can be, so it's always great to hear about someone who finds a good one. <3

Anonymous said...

I reposted this to my fb. I thank you so much for writing this. I saw a new to me mito doc last week that said mito people dont get pain. I was shocked as like you I am in pain 24 hours a day. I have a great pallative care team who helps but I never get the pain below a 6 either. Now I have needles full of morphine sitting in my fridge for when meds by mouth just dont work.

Robin said...

Anonymous -
Thank you for your comment. As always, it makes me so happy to know that someone out there is making use out of my posts. I just cannot believe that a "mito doc" would say that! Sounds like you need a new mito doc! Dr. Fran Kendall in Atlanta is great if you're able to get there. The fortunate thing is that once you see her for an initial visit, your follow up visits can be done via phone or webcam.

If you can't get your pain below a 6, your palliative care team and/or pain doc need to work harder! I hate to hear that you're in that much pain all the time. I can get mine down to a 2 on occasion. I'm sure I will do these types of posts again for Mitochondrial Disease Awareness Week this year so stay tuned! Well, that is unless being the chairperson for the walk makes me so sick I don't feel like doing anything including typing for a week. :-)
Have a spoon filled day and keep in touch! If you ever want to talk more privately, feel free to email me. Just be understanding if I don't email you back right away.