Chronic pain is a difficult thing to explain. I feel like a crazy person all the time. If I had an oozing open sore, or hives, or a fever, or a bullet wound, a broken bone, everyone would be able to see what hurts. It would be probably easier to treat, too.
Back story: I hurt my back in 1998, then high jumped at Penn State for 4 years. I received the best physical therapy there, they were awesome. In retrospect, I think they did more good for me than the bad that the high jumping did. The trouble got more troublesome after I graduated, and I didn't have my 3x a day miracle workers to take care of me. I really, REALLY loved those people! Physical therapy in the real world is a terrible, terrible waste of time and money. $30 copay to get a hot pack and be told to do 30 sit ups on a ball? Are you serious? Is this 1982? Idiots. So where was I.... 2004 I jumped over a friend (it was a stupid idea, we were drinking and snow tubing), he actually ducked and I flew right over him, landing square on my head, like, legs up in the air. Crunch! I blacked out for a second- then seemed fine- miracles! But I have had neck issues since. 2005 Lyme's disease, I slept for a minimum of 14 hours for 3-4 months after that, and slowly was back to normal a few years later, but I don't think I ever fully recovered. 2008, very violent and traumatic labor with my daughter (ended up with a c-section), I may have ruptured a disk and did damage to my SI joint while pushing- also haven't recovered fully. Then in 2010 I had a planned c-section with my son, much better experience! But carrying that giant baby around gave me sciatic issues that I still have. I was so thankful they took him a week before his due date! He was 9lbs 4oz already. I like to lovingly call him "meatball" and "the big easy", both fitting for that big sweetheart :) This year (2012) I was diagnosed with a wheat (or gluten, not sure yet) allergy.
I think that about sums it up. My main diagnosis seems to be Fibromilagia because I have constant pain that is everywhere and makes me tired, but I don't think that is the whole truth. I am still trying to find what is wrong with me, and what to do about it. Not eating gluten has helped, but not completely. It's more like when I do eat gluten, the pain is a lot more unbearable. There is something wrong, and I believe it can be remedied, but it's already been a very, very long road.
This is what chronic pain feels like for me.
-A car alarm, or alarm clock, that never ever turns off, and get louder or softer depending on the pain level. Sometimes it is so loud and close to your head that it is hard to hear and process what people are saying to you. It's hard to focus, to stay on task, to remember why you walked into a room. Sometimes it is in the background, and you can do a pretty good job of ignoring it and getting on with your day. But it never really goes away for good, even if you take narcotics.
- At the worst part of the day, it's like someone is giving you an indian burn, but you can't break away and they just won't stop. You want to punch that person in the face to get them to stop, but there is no one to punch, the pain is coming from your insides somewhere- but it's hard to even pin point where.
-Your back hurts, but so do your fingertips, your legs, your hair, things that don't even have nerve endings, so they can't possibly hurt, so you must be crazy.
-Unloading the dishwasher and putting laundry from the washer to the dryer is a huge deal. You have to give yourself pep talks, and do Lamaze breathing. You get angry at yourself and the situation. Why the HECK is this so hard to do? I used to be able to bound up the side of the Penn State Football stadium like a gazelle, well, the first 3 times out of 9 anyways. By the end it was a pretty sad sight. The point is that knowing what you could endure then and what you can endure now is so different, leagues apart, that you feel worthless and low. This is what I have become? That is depressing. On the flip side of this, you can dig a huge hole and plant a tree, you can run full speed at the beach, you can do all sorts of things that only a healthy person could do- so you must be fine! I find that the more intense or difficult a task is, the easier it is for some reason. It's like the large muscles and adrenaline take over and the pain goes in the background, but you pay later. Small, easy tasks are the awful ones.
- Everything is so daunting. Toys on the floor you need to pick up, dishes in the sink. Every movement and stretch and bend hurts, and you start counting how many you will have to do to get the job done. Then you stop counting, it doesn't help in the long run!
- People get on your nerves way faster than they did before. Dishes in the sink, stuff in your way, doing any extra movement is a commitment and a mountain to climb. It takes pennies out of your piggie bank that is bordering on bankrupt in the first place. You wish your kids' childhoods away, someday they will wipe their own butts, get their own juicies, fold their own laundry, be helpful. But that is YEARS away. You have years of it like this first. Years are a long time when they are in front of you. You feel like a bad parent because you can't fully appreciate the wonderful stages your kids are in. They are great kids, it's not their fault you have so little to give.
- You have a few trusted people who can in some way understand what you are going through, thank GOD for them! You only really talk to them about this. Otherwise you feel like a downer, or that people think you are exaggerating, or lying, or whatever. You get sick of hearing yourself say the same thing over and over for years. They just can't understand it, or make sense of it, and why could they?
-It feels like a low grade flu, body aches, joint pain, but no fever. Nothing to show.
I have tried the following over the last 14 years:
- 4 Chiropractors for a minimum of 6 months per
- expensive high tech traction that left me in worse shape
- massage therapists- I found one who makes me feel better and not worse over all (YAY SHELLEY!)
- Shiatsu - I do like this, its gentle, but not quiet, something, enough to make a big impact
- Physical therapy
- tens unit
- raiki
- yoga and pilates (helpful, but not fixing anything)
- keeping active, exercising, stretching, eating healthy, keeping a healthy weight, lots of core exercises
- heat packs on back and neck every morning, and several times during the day when possible
- anti-depressants that were supposed to focus on the Fibromialgia (not very helpful, off after 6 months)
- Rx narcotics
- Rx anti-inflammatories
- Prayer
- Supplements- Glucosamine/condroitin/ Vitamin D (low on blood tests), Vitamin B, Fish Oil, calcium, iron
- New Dr- Osteopathic
So far the best plan seems to be sticking with supplements, not doing high impact exercise, which is the only kind I enjoy, getting massages as much as possible, taking anti-inflammatories even though I don't think they are doing much. When I have a really bad day, and I think about how awesome heaven will be and how I want to go there more than twice a day, I take an Rx narcotic and it dulls the pain to a manageable level. I don't ever feel out of it on them, just closer to normal. Which makes me pretty sad. I don't understand how people get addicted to these. I don't get that AMAZING high feeling. It just makes things less horrible.
There are some natural mood lifters that make my pain move further into the background and easier to ignore. One of them is doing things that cause a lot of adrenaline. Like, risky intense projects involving loud saws, or axes. Doing landscaping, where there is a big difference when I am done- I feel so accomplished and that natural high I get from that is such a welcome reprieve. Although that exercise causes so much more pain in the following days that I am inclined to stop doing any of that for a while. But then I get bored, and down, and I still have this pain that is always with me anyway. Normal life causes no adrenaline rush, with subsequent additional pain levels, but it's pretty boring. More dishes in the sink, stuff on the floor, laundry to do, juices, meals, repeat repeat repeat. But being a stay at home mom is a huge blessing because I have some flexibility to get to the gym and go to appointments. And I LOVE my kids, they are great! I want to have these years with them. I am thankful for being able to stay home, I don't want it to seem like I am not. Having said that, it's no Shangri la, as any stay and home mom would tell you :)
I like my new Dr. She has a background in internal medicine, like my dad, which I like because they deal with measurable facts and studies. She also has a background in chiropractics, but does not do rough adjustments because they are too damaging to the body. I totally agree, I went for years, but did not ever get much pain relief. It felt like my body was reacting to the snapping and cracking by getting even tighter to protect itself. Some people swear by it, but I never personally found it to be very helpful.
My new doc did some very gentle pressure exercises. I wish I remembered more of what she said. She went from the head to my feet. The basic jist is that I have injured myself so much over such a long time, that my body systems keep finding ways to compensate for what isn't working, but now I don't have much left to pull from. She is opening joints gently, promoting my body to start healing itself. It's an onion peeling process. She said I'd feel pretty bad for a few days after the first treatment, man was she right! For days the car alarm was next to my ear, SCREAMING constantly. I am starting to get back to normal after 4 days. I have some hope there. I feel like she understands, she listens, and she has some solutions besides drugs. Yay!
I am also trying to eat a low inflammatory diet that is high in phytochemicals to encourage healing, and eating less sugar. My morning coffee is the final straw! Not eating sweets is pretty easy if you cant have gluten, coffee and ice cream are still tough though.
I'll try anything. I'd stand in a lightening storm if someone said they heard of that working for someone, ever. I know it can be better, and I'll keep trying to find answers, new things to try. This is a huge battle for me, every day. Not everyone can understand this, but some people can. The whole thing makes me have to lean more on God miraculously helping me get through the days, and it also makes me super pissed that He doesn't just end this finally. I hate waiting. Does anyone not hate waiting? Tell me your secret!
I'll update as there are things to add. If you pray, please pray for me, and thanks for listening.
