Ok, that was bad. But so is the pain.
I have been dealing with incredible neck, shoulder, back, and arm pain for months now. One reason, the main reason, I have not made more posts here. I have not spent much time on-line anywhere, not here or on the website. My answers to emails have been as short as I could make them. The pain of doing anything with my arms has been excruciating. probably should use shorter words too. Guess using long words comes from all those college term papers where you had to fill up so many pages and using long words helped immensely.
So, what did we do to try and solve this conundrum? (hard to break the habit, sorry).
What all of your Drs have done in the past I am sure, you will recognize the theme, most insurance companies require it anyway. Music please!
Doc, I really think I need an MRI.
Passive therapy first please. Let's start there.
Ok. But then can we do an MRI?
We'll see. (the most dreaded words any child, and then any husband, wants to hear. We all know what they really mean).
Go to PT and learn new exercises, some there, some more to take home.
Pain continues. I suggest to the therapist that she send in her report early and maybe suggest 1) MRI and 2) aqua therapy. She agrees and does.
Next appointment. How is the pain? Same, maybe a little worse. Did you get the PT's report? Yes. Can we do the MRI? Not yet, but try the aqua therapy.
We try the aqua therapy. I happened to hit my foot in the meantime, trying to avoid my cat in the house, stub my foot, it sets off a nasty CRPS flare. I sure hate this darn disease. The aqua therapy doesn't help the neck/shoulder/arm pain but does calm down the CRPS flare in the foot/lower leg. yeah!
back to Dr. How is pain? worse. Can we do MRI? Yes. Three months down the road now. I hate insurance companies. I know he had to wait, to show we tried other things before we did MRI.
Now we wait for ten days for insurance company to approve MRI. Finally do. have MRI. Then we wait for three weeks for appointment to review MRI and maybe do epidural cervical block.
How many months now? argggh.
ok. So on Wednesday I had my appointment for the review/block. Keith, the good news is that you don't have a new herniated disc in your neck. yeah! The bad news is that what it IS is, cervical spondylosis , also called arthritis of the neck. He said, in some people it is not an issue. Many people can have the same looking MRI at this age and not have a problem. Others, like you, can have severe pain, or flare-ups, from time to time.
Um ok. Four+ months of lots of pain. Lots! neck, shoulders (both), arms (both). He said that we needed to do an epidural cervical block. Not a big deal he said, just like the one we did in your back a few months back (I need one in my back about once every 9 or 10 months for the disc issues there). Except the last one took a long time to recover from for some reason. Not sure if it was the different medication used or just age or some other reason. But I have had blocks of many types in many areas over the years; back, lower, middle, many of them; back of head (for migraines); heck, even right in the eye before my corneal transplant! So I am used to injections. Then he said, plus we will need to get you back here in three weeks for two more to really put this thing to bed. Fine by me, whatever it takes to stop this pain.
I am used to the CRPS pain by now, the level I have been having anyway for the last few years, even the back pain level, and all the other pain issues. It is the flares of the pain problems that seem to kick my butt because they seem to rile up everything else as well. it is kind of like living in a house full of animals, or probably kids. If everyone is calm and quiet it isn't too bad, even if there are a lot of them. But if one starts getting loud, then everyone starts getting loud. Pretty soon there is all kinds of noise going on and it is hard to get everything calmed down again.
So my pain right now is about a 9.5 and it is usually an 8 or so. An 8 for a chronic pain patient. That isn't too bad. You chronic pain patients out there understand me when I say there is a BIG difference between an 8 and even a 9 and a huge difference between a 9 and a 9.5. I rarely say I am having a 10 day because I know there is nothing above that.
(this is why we are with the group of individuals and organizations that is working on trying to develop a new pain scale for chronic pain patients that will be used across the country, the current one simply does not apply to CP patients. It is really just laughable to apply to us).
BUT, here is the issue. The nurse who starts the IV line (something that is covered, I assume, in month one of nursing school) can't get it started and decides she is going to have the plastic needle thing go and visit every square mm of space inside of arm possible looking for the vein she missed, despite my repeated cries of pain. I finally convince her to take it out. I think it was the third "Take it out!" that did it. I had explained to her, before she started, that I had CRPS, RSD, and that she had to be very careful when finding the vein and starting the IV, use the smallest needle possible, and please be gentle. I said the veins tend to move and disappear. I said you might want to use the hand area instead. ok. Nope.
It was the second time in two months I ended up with a baseball size bruise due to this process. I explained to her and the staff and the Dr that venipuncture CRPS is the most painful form of CRPS that exists and it starts due to getting stuck with a needle giving blood or starting an IV!
Makes me nervous about the next time but I will do two things. I will bring in an article about venipuncture CRPS and I will make sure they have the most experienced nurse on the floor, or the Dr, do the IV line this time. I am also going to go in this week and share the same article. I already wrote the clinic about it and talked to them on the phone about it. They were very nice and knew about the issue already. I know some may think I am being a pain in the ass about it and I am not trying to get that nurse in trouble for it, but I don't want a new CRPS site or flare, nor do I want some unknowing person to end up with this crappy disease because someone does not know how to put in an IV line anymore. There are enough CRPS patients already darn it. Let them be pissed off at me if that is what it takes to stop one more person from getting this disease.
Well, it is almost a week later and I don't feel much better but the Doc said it might be three weeks before I felt much effect from the block. Great.
Ok for now. Hopefully the months of August and September were much better for you guys!
remember, November is coming! NOVEMBER IS CRPS AWARENESS MONTH!
Check out the website to see what is coming up for awareness. If you have something to post, some event, send it on in to RSDHope and we will post it there. A fundraiser, run, walk, etc. send it in. If you had one, send us the pictures and we will post it. Doesn't matter who you raised the money for, as long as it was raised for CRPS Awareness, let us share it with the CRPS Community.
Have a great CRPS Video you shared on youtube? Send us the link and your permission and we will out it into consideration for placement on our video/audio awareness page!
Want a copy of the National CRPS Awareness Ribbon for your Facebook page? Check it out!
or how about one of the new National CRPS Awareness Ribbon Pins! only $2 each or less if you buy them in quantity or for a fundraiser! or how about a CRPS Awareness Magnet for your car or truck!
I will close for now.
Have a good day folks. Sleep for me and for others who don't!
peace,
Keith
American RSDHope
www.rsdhope.org
Monday, October 8, 2012
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