So many things I start writing for this blog end up as articles on the website instead. Or, I start writing a blog post and then my body simply does not allow me to finish, due to the pain from the CRPS or exhaustion from the fibromyalgia, or a combination of the two.
Most of the time though it is simply because since my CRPS is full body two of the parts of my body that are severely affected are my hands. Well, hands and forearms. Typing, using the computer, gets very difficult and painful very quickly and I have to choose between answering some emails from people who write in to RSDHope, making a few adjustments to the website, and/or writing the blog the blog will lose out every time.
I know some of you out there are saying, "But Keith there are plenty of programs now that will type what you speak!". True. For the most part. But it becomes harder when you use more medical terminology and also when you use the computer more in the middle of the night when you can't sleep due to insomnia and if you type, it's quiet. If you talk out loud you wake others in the house up! Plus, there is something I like about seeing the words come alive as I type. It is sort of like preferring an actual book to the ones you can download onto your e-books or I-pad. It is what happens when you are old-er like I am ;-)
I think maybe in the future I will just close off the blog and just add stories and articles directly to the website.
THE SEE-SAW LIFE OF A CRPS PATIENT
When you are married to a CRPS patient, or partnered with one, living with one, have a child who is a patient, etc., one of the first things you learn (some better than others) is that life often gets postponed. Too often. You try to plan things out far in advance, aim for the best times of day for the CRPS patient, your loved one, but you simply cannot plan for every contingency and sometimes life just has a way of getting in the way of even the best laid plans.
If you have a loved one with CRPS the one skill you need to develop quickly is learning to adjust. Plans will change. Learn to adjust. Finances will change. Learn to adjust. Intimacy levels and habits will change. Learn to adjust. The sound volume in your home will need to change, the level of hecticness (is that a word?) in your home will need to change, learn to adjust.
You will become frustrated now and then, so will they, but try and become frustrated with the disease and not with each other. Learn to adjust and laugh about the dumb things in life, there sure are plenty of them. Learn to appreciate the quieter times together, appreciate the time spent with your children, if you have them.
If you have to spend a lot of time going to and from the Doctor, get some books on tape/DVD/CD and listen to them. Better yet, make them CD's of comedians and give yourselves a humor break before and after those sometimes trying events.
PAIN LEVELS
When you live the life of a CRPS patient you strive to get to a point where your pain is even, balanced, on a fairly stable level from one day to the next. Zero pain is of course the ultimate goal, zero pain and zero symptoms and with the new CRPS Type I medication now coming, wow, that is actually attainable! Or at least it will be in the very near future, perhaps as early as the end of 2015.
That actually goes for all chronic pain patients. We patients seek a place where our pain is at a manageable level so that on a weekly basis we know that our typical morning, evening, or daytime will be, well, typical. It will be the same week-in, week-out. "Normals" may find that boring but we find that wonderful.
We work towards that place where our pain level and symptoms will average the same each day. Now that pain level may be very different for each patient and the amount of pain that we can handle after a couple of years would probably send most "normals" (normal people) to the ER screaming for painkillers! For us, it's just Tuesday.
MY PAIN LEVELS
For the purposes of this article I am going to share with you my typical day and week as well as how life with a CRPS patient never ends up being typical.
- For me the average pain level in the early morning is about a 9.
- It comes down to an 8 by around 8 am.
- I try to plan most of my activities for this time period, usually between 8 am and noon or 1 pm.
- My pain level stays that way (8) until early afternoon when it closes in on 9 again. The fatigue greatly increases at that point as well, mostly from the Fibromyalgia. Not always because of an activity but simply the cycle of the CRPS and the back diseases.
- Typically I will need to lie down in the afternoon for about four hours. I don't! ha ha, I need to but I don't ;-) I can't remember the last time I slept for four hours in a row. Maybe if I was sedated. I suffer from insomnia so between the fibromyalgia and the insomnia any time I can grab an hour or so of bodily rest I try to. Even if I don't sleep my body has rested.
I know that some Doctors will tell you that the worst thing you can do if you have insomnia or sleeping problems is to take a nap during the afternoon. Let me tell you, I tried it their way for years. I tried every sleep medication under the sun. I even tried medications that are meant to keep you awake during the day just so I would be more tired at night! My way seems to work the best.
- Late in the afternoon and early evening my pain level generally heads back down towards 8.
- By bedtime it has risen to about a 9 again.
- With the help of my meds I am able to get some sleep, typically two hours and that drops my pain level back to an 8. (the meds are not sleep medication but rather medication I take for migraine prevention and for spasms that have the happy side effect of making me drowsy).
- After a couple of hours of sleep, usually around 11 pm or so I am awake again, the pain will wake me up. The overnight period is marked by short periods of light sleep, rest, and wakefulness. Insomnia is one of the symptoms of CRPS and not one of the fun ones.
- Without the deep REM healing sleep our bodies so desperately needs it is difficult for our pain levels to drop appreciatively and the cycle continues.
- My typical sleep cycle is two hours at a time, then I am up for a bit, then back down for another two hour period. I usually get anywhere from four hours a night to six hours altogether. About once a week it is about two hours a night. About once every other week it is about 7 hours. Go figure. I can't discern a reason behind the pattern so I just accept it now.
The quality of that sleep is not the greatest of course because I never attain REM sleep. You can read more about why that is here.
Those of you who suffer from Fibromyalgia as well as CRPS understand what I mean by fatigue. Those who don't, please don't think, "Oh yeah. I get tired in the afternoon too." Trust me, being tired and having Fibro fatigue is like comparing a Ford Fiesta with a Ford Mustang and saying, "Oh yeah, I have a Ford too." It's not the same thing even though it sounds the same.
If I have volunteered somewhere in the morning for a couple of hours then resting in the afternoon is not only probable it is an absolute necessity. Otherwise my body will simply shutdown. I am always encouraging patients to volunteer in their community. It is an excellent way for patients to;
1) Get out of the house.
2) Stay mentally and emotionally involved with other people, especially if you have had to leave the workforce.
3) Still be able to share the knowledge and skills you spent a lifetime learning or perhaps do something you always wanted to do but never had the time.
4) Give back to your community. My parents taught me that this is something we should all always do wherever we live and whatever is going on in our lives.
5) Remain physically active.
6) Keep your brain sharp and work on your memory.
7) Meet new people.
8) When you focus more on helping others you focus less on your own problems.
I recommend that they be smart about it of course, keeping it down to just an hour or two at a time so as not to cause a problem with their CRPS or other pain issues; make sure the people they are helping know all about their limitations, medications, emergency numbers, etc. in case of an emergency; be aware of the time of day they are volunteering so as not to cause a problem with their medications; be cognizant not to overdo. I know I am very bad about this sometimes. I get lost in what I am doing and lose track of time and then the next day I pay a high price for it in terms of extra pain.
MEDICATIONS
What chronic pain patients strive for is balance, an even keel, getting to a point where their medication and exercise regimen are working well, their emotionally stable as are the people in their sphere of influence (not always an easy thing to accomplish), they are participating in outside activities and keeping their brain and other skills sharp. In other words their life is settling back into a state of equilibrium. This is a difficult thing to accomplish after such a major calamity like CRPS or some other type of chronic illness has entered your life but it can and does happen and you can do it.
What can knock you off that merry-go-round? What do we mean when we use the term "roller-coasteering" medications and how does that apply to what I have been talking about?
Once you find medications that work for you, that your Doctor has prescribed for you, FOLLOW THE PRESCRIPTION DIRECTIONS! If it says two a day, or one after meals, or one in the morning and two at night, do that please ;-)
If you have questions about what it says on the bottle ask your pharmacist or Doctor but don't, don't, don't take your medications until you start feeling better and then once you are feeling better STOP taking them.
Guess why you are feeling better? Because your meds are working as intended!! When you stop, your symptoms start returning, you start feeling worse again, maybe pain is worse or migraines, or spasms, whatever that med was helping with. So then you start taking your medications again.
Then you say, "Hey, I am feeling much better!" Guess what happens? You stop taking some of them again. And the pain and other symptoms return.
That is one scenario.
Another scenario is the patient who does not take their medication at the same time every day or even every day figuring skipping a day here and there is no big deal or taking it at 10 am one day and 2 pm another day is no big deal.
The same thing will happen as up above. Their pain and/or other symptoms will return and/or will be all over the place. When these patients go to the Dr and he/she asks them how is the medication working they inevitably will say, "It isn't helping me very much."
Taking your drugs this way is called "roller-coastering". Up one minute, down the next.
That may sound dumb to some of you but to others you are thinking, "oh boy. no wonder my meds are not helping me as much as the Dr. said they should be. I do this all the time." It may surprise you but I hear both from patients all the time. If you fall into category number two, change it right away, it will make a world of difference.
MY MEDS?
My main pain medication now is the fentanyl patch. Years ago I was on Oxycontin until they switched the formulation to stop people from abusing it (breaking it down into powder form and snorting it). They did this by adding a coating to it. All that did was slow the abusers down for about an hour and a half until they figured a way around it.
Once again, a switch. Can you sense a pattern? The see-saw life of a CRPS patient. It is what we live with and what our loved ones live with. just when you start to get settled into a routine and you think you have your pain at a level you can manage something comes along to mess it up.
Each time we have to make a change to our major pain medication you have two significant swings; the first is when the initial pain medication slowly stops working and the second is when you have to find and adjust to the new medication. if you are lucky you find a good match on the first try and it is only a short time between swings. if not? Well it can be months and there is a long swing there. That means a lot of increased pain which then cascades into your other symptoms; sleep; extreme sensitivity to touch, sound, vibration, light, temperature; spasms in the muscles and blood vessels, etc.
I was lucky in that I was able to switch right to the Fentanyl patch. It took me three tries to get to the right level and that took four months but at least I finally got to the right level and it works for me. There was a brief month when my insurance made me switch to the generic version of the patch to prove it didn't work before they would pay for the name brand. For me this was kind of like switching from a strong narcotic to certs for a month. The generic form of the patch was pretty useless for me and it was a very, very painful month for me.
SEE-SAW LIFE OF CHRONIC PAIN PATIENTS
or How we go back and forth
I apologize for making this so long but I want to include a few details so you can see some of what it is like for a typical patient. I won't include anything to do with my other diseases and other medical issues so I can try and keep rings focused on the CRPS, but it still will be long. It will be worth it though so hang in there ;-)
Two summers ago in our little town we caught a glimpse of what life may have been like for Noah. It rained for many, many days and nights. A few of us started drawing up plans for an ark and I think if we could have figured out what a cubit was we may have actually have built the thing. We were going to include a man-cave in this version though and there was talk of excluding roaches and mosquitos this time around.
Near the end of the rainy season, while checking on the last of our items not flooded in our leaky basement I fell down the entire flight of stairs in our basement. It had been leaking/flooding worse and worse with every rainstorm. When I arrived at my destination, the bottom, I was terrified. Not so much at the pain, which I was sure was coming as soon as my brain registered it, but by the thought that I had re-injured the lower spine that I had originally broken in 1985 in a severe auto accident.
Back in 1985 I ended up with lamenectomy and spinal fusion on L5 and S1. I spent nearly two years in physical therapy and originally they gave me a 25% chance of success for that surgery, which occurred in 1987, following rotator cuff surgery (also from the accident). Took quite a few months to recover from and I had to learn how to walk again afterwards. That back injury and/or surgery is also what caused my CRPS to spread full body.
Somehow that flight down the stairs took a very long time and as I went down I kept thinking, "This time I may not recover, this time they may not be able to fix it, Lord help me, Lord don't let it be broken, I cannot go through that again." I don't ever remember being so scared.
It turned out to be a piriformis muscle injury. By the time I got to the ER one side of my buttocks had swollen to the size of a small cantaloupe, in the time of about ten minutes, and it kept getting larger. They said they had never seen a reaction that quick before (again, notice a pattern?) I looked like a malformed Khardasian sister.
That injury happened the end of July. I could barely walk the entire month of August and then with the help of Physical therapy and lots of pushing on my part and the help of my better half, I got back to walking but here it is 18 months later and I am still in pain from it and still suffering because of it. That injury has caused us to cancel plans, adjust many activities, cancel volunteer activities we planned on doing together, cancel months of "couples" activities, and many other things. Any time a patient suffers additional pain so does the loved one, as you all know.
Before that injury, I had my pain level at a manageable level. See-saw.
I will step things up here as you can see the pattern.
Winter comes. We had moved to a milder climate because in the colder state I lived in, every time winter came all of the progress I had made was lost once the cold weather settled in. Moved to Florida. But the very hot weather, which is almost all the time down there now, made outside activities almost impossible most of the year for me and my partner. She was very affected by the extreme heat and the hot summer month really bothered me.
Found a nice medium, right smack in the middle. Very mild winters, nine months of the year we have fantastic weather and we can walk eleven months of the year outside. Wonderful.
Still, the cold weather does affect me and my pain just not as much. Mild see-saw ;-) Maybe, teeter-totter!
Come February we had to travel via plane to a conference in another state. I don't normally like to travel because of the pressure changes that come with the altitude but we needed to attend since American RSDHope was co-sponsoring the event with the RSDSA. When I returned home it took me a week to recover. The trip and the plane ride caused my pain to spike.
See-saw.
Due to my back issues ( degenerative disc disease, bad discs in lower back and very bad discs in my neck) about once every nine months I need a lumbar nerve block to help me keep walking. These are the exact same kind of Nerve Blocks that are given to newly diagnosed CRPS patients. Usually I don't have any problems with them. I have been getting nerve blocks for the past 20+ years. I have gotten nerve blocks in my back, my neck, even the back of my head (to try and stop migraines, now THOSE hurt). I have even gotten needles injected directly into my eye before. Ooh yeah, fun times. That was before my corneal transplant.
The only time I ever had a problem with a nerve block was back in 1992. I received a lumbar block and apparently they went into the spinal canal and I was temporarily paralyzed from the neck down for about 24 hours but I was still able to breathe on my own. I couldn't move my arms or my legs. I could talk, could not really move my neck, couldn't feel any of that stuff. I was out of pain at least!
They made my wife take me home 23.5 hours after the block because my insurance wouldn't admit me for the procedure I had. I had started to get some feeling back in my legs at that point but I couldn't walk and could not use my arms. My poor wife, she was all of about 5 feet tall and had to carry all 6' 200 pounds of me, dead weight, up two flights of stairs. I still don't know how she did it but the neighbors forever after that called me a drunkard. They thought I had passed out drunk somewhere and she had to go get me and carry me home. May sound funny now but it was very hurtful at the time, for both of us.
Anyway, this time that I received the block, in 2013, I had a weird reaction but not totally unheard of. I had never experienced it and they had not seen it before but I had heard of other patients experiencing it. I share it with you now, like these other experiences, so if it ever happens to you you will know you aren't crazy or nuts or bizarre just a CRPS patient!
What happened was within an hour of the block, I was home by then, my entire upper body turned bright red. They had to put the IV in my hand because even though my veins look mah-velous they disappear as soon as they try to put a needle within a foot of them. No pun intended. The only place they can put an IV most times is my hand. They did a great job doing it, despite what the IV site looks like in the pictures. There were no problems putting it in. I always follow the protocol we set up when it comes to Needles and CRPS.
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| This is my left hand where they had the IV |
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| RT hand, five days post block |
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| chest, six days post block, red disappearing |
As you can see in the pictures, I was still bright red many days following the procedure. My block was on a Friday, I went back to the clinic on a Monday because they couldn't believe it when I told them I looked like a boiled lobster! There really wasn't anything they could do and it wasn't causing me any pain fortunately, just this weird color reaction. It finally disappeared about one week later.
See-saw
It is a bizarre disease like no other and having said that, never ever compare medication dosages with other patients in the hope that if it worked for them it will probably work for you!
Chronic pain medications, like opiods, can work differently
Just two quick notes while we are talking about opiods and chronic pain medications. The first is that you might read information about chronic pain patients becoming addicted to their medications. Unfortunately the Doctors and "non-Doctors" out there who have pushed this idea that everyone who has chronic pain becomes addicted to pain medications has been very successful in getting this idea out there. it isn't backed up by the facts I have seen though. Here are some articles you should read about it; CHRONIC PAIN PATIENTS AND ADDICTION - ONE and CHRONIC PAIN PATIENTS AND ADDICTION TWO .
I know this was a very very long post but that will also help to explain why it took me months to write it. I had to stop and start it so many times. I think I have five other articles in various states of "finishing" as this one was. I hope this helps some of you.
Peace, Keith Orsini
Full-body CRPS survivor for 41 years
American RSDHope
