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Monday, March 5, 2012

OOO the pain

It has come to my attention that I haven't given a description of the pain I experience. Mostly because...well it hurts too much.  

When your nerves demylenate (after all these years I really should learn to spell that because spell check has no suggestions) your nerves are basically fraying like an electrical cord. If they are looked at under a biopsy they tell me that they look like onion layers from being ripped apart by our own immune systems. The exposed nerve is hyper sensitive and for me the slightest touch hurts like hell.

Not everyone experiences the pain the same way. Mine burns, others stab, others say they tingle and are numb. To me the word "numb" means you don't feel any pain, numb would be a Godsend. But I get the idea of numb from the tingling because my hands & feet tingle in the beginning, then they burn. Up until two years ago when Doctors or nurses asked me to describe the pain I had trouble getting across just how badly I hurt.  

 It reminds me of when I was a teenager and didn’t care about sun damage, anyone over 30 can relate to those days, ALL day outside without any sunscreen what so ever, and hey I grew up in Florida so that was every weekend. But all day in the sun makes for a NASTY sunburn. The kind where you don’t wear a bra for a week and slather on enough Banana Boat alovera gel to make yourself look like a sunburned alien, that kind of nasty sunburn. So, imagine that sunburn…now imagine scratching your sunburn. Yeah! That’s the burn, right there. But that analogy didn’t truly express how bad it hurts when you go to a teaching hospital and the med students are younger than you and never got sunburned like that, because when you scratch a sunburn the pain stops in a few seconds but for me when I am having an exacerbation the burning is constant for WEEKS! That's right 24/7 for weeks if not months on end.

You can't sleep because, well, everything hurts from your scalp to the tips of your toes. Any kind of clothing hurts, blankets, even my super soft fuzzy cat feels like a cactus. You are so bitchy that Snow White calls and asks you to join her because you make grumpy look like happy. If you can't sleep your body can't heal. Pretty much every Doctor with any sense will tell you that. Now, will sleep stop an exacerbation? Not for me I need IVIG. But sleep is essential to getting better. Why else do you want to do nothing but sleep when you have the flu?

So I tried a new analogy. I said it was like jumping out of the frying pan & into the fire. They didn’t get my redneck slang. So I said I felt like I was being burned at the stake. That helped but not truly. Being burned at the stake implies outside where the wind may push the flames away and usually they died of smoke inhalation before the flames got them anyway.   

Now, my final analogy, and believe me it gets my point across. It feels like, what I assume being cremated alive feels like. Trapped, 5,000 degree flames surrounding your body with NOWHERE to go, no way to make it stop. Scale of 1-10, 10 being worst,100,000. I don’t always hurt that badly. Most of the time it’s just out of the frying pan & into the fire, still hurts but not as bad.  Scale 1-10, about a 4 I can handle that without any medication, be it lyrica or the likes for nerve pain or any one of the hundreds of pain medications out there. But during an exacerbation I have to have pain meds for a few days. I don't like them, I am a control freak & want complete & utter control of everything & everyone. But when I hurt that badly (and I don't go to the hospital until I absolutely can't take it anymore & that usually takes a week or two) I just want some relief. I know wanting to be pain free is unrealistic but to take it down to a manageable level helps me relax & sleep. Then we begin the IVIG & in 3 days I don't need anymore pain meds. We did try just giving me a crazy pill as I like to call them, a valum, but it didn't even relax me. They tried ambien & I still didn't sleep, they tried Valium & ambien together, still wide awake. So yeah I had to have straight up pain meds. I hated it because I was loopy, I was waiting on Mickey Mouse to call asking me to come to Disney cause I was Goofy! Sadly that isn't a joke! I asked a nurse if Mickey had called. She just looked at me like I lost my mind & I had but I just giggled & went to sleep.

Will all CIDP patients experience this extreme pain?
I don’t know. Most everyone I know has at one point.
Does it get better?
For me yes.
For everyone else? I pray to God, yes.

Am I promoting pain meds?

No, I'm just saying that for me I needed them to help me get even a few hours of relief. If you can make it without them DO IT. but if you have to take them DON'T get addicted to them. Take the smallest dose you can & get off them as soon as you can. If you already have an addictive personality talk to your doctor honestly about it & ask for their suggestions to help you cope. If the doctor isn't willing to discuss options with you get a new doctor, pronto!

Ok, night y'all. I'm going to give my burning fingers a rest.

November 22, 2012
Just a little update. Since I wrote this post I have gone into a type of "remission" it isn't a true remission because I am on IVIG every 3 weeks but I am finally burn pain free! I still have pinching in my shoulders & neck & my hips hurt but I think that may be fybromyalgia or something of the sort & not related to my CIDP.


  1. Cheryl,
    I'm reading your posts, very interesting. Such stories we have to tell with this CIDP. And the doctors....humph! Some are just so prideful, if they don't know, they should admit it and get help from someone else or refer us to others. I had that happen FINALLY and was well worth it!
    Wendy Nash

  2. The doctor I have had since 2007 is awesome. I wouldn't trade her for the world. The bozos before her... well, one day they will have to answer for the way they treated me and I would not want to have to answer those questions!

    I agree if you don't know, say so & find someone who does. I'm more forgiving of someone who admits the truth than someone who lies, I hate liars. No one is perfect...well, I'm close but thats a whole other issue! LOL But honestly I am perfectly ME :) Good, bad and everything inbetween