Friday, October 30, 2015

Complex Regional Pain Syndrome (CRPS/RSD)

Well it has been awhile again and I am giving you "fair warning", if you stopped in to read about trailrides or RV'ing or see if I had been out with the camera lately you will be disappointed and probably should just move on to the next blog.

Over the years we have tried to keep our journal a relatively happy place and I think for the most part have succeeded. This time we are going to go a little more "real world" on our readers and give you an insight into what has been happening behind the scenes in our life.

Long time readers will remember that Brenda, a few years back, started to have more and more pain in her knee. They tried a little physio, a little arthroscopic surgery, a lot of pain pills, and eventually came to the conclusion that she was probably going to need a knee replacement to relieve the pain. Because of her relatively young age they were really pretty hesitant to do the knee replacement as they were concerned that she would wear this replacement out and the next one wouldn't be so easy.

Her knee really bothered her when she was riding and as we did a lot of that it was becoming a bigger and bigger issue. As the knee got worse and the pain got more intensive eventually the decision was made to go ahead and get it done. A date was set and we headed north from Dogpound South a little early last spring (March 2014) so as to have everything in order for her surgery in mid-March. The surgery went well and the prognosis was great, a few weeks or couple of months of physio and God willing she would be back running around like her old self. Brenda worked hard at the physio and although lots of folks stop at about 100 degrees of flexion on the new knee she had hers up to around 130 degrees. Getting back on that horse takes a little more than normal and that is what she was focused on. The pain was still pretty intense but that is normal for knee surgeries and after her 6 week checkup the doc said you should be able to get back on your horse in a couple more weeks if you are feeling up to it.

That is really where this story begins though. The pain never lessened and there just seemed to be something not right about the replacement. To make a long story short eventually the doc decided that maybe there were some small fractures above the knee and he immobilized the joint for a month, there went all that hard work to get the flexion going good.

Jump ahead to the middle of August 2014, and once again Brenda is heading into the surgical suite for some exploratory surgery to get this knee replacement back on track. The doc says they found a little scar tissue where it shouldn't be and he replaced the pad under the knee cap while he was in there, but nothing major and it seems like those small fractures that they had seen on the CAT scan were not really there and were probably just artifacts caused by the artificial knee prosthesis.  That was a bummer as we were hoping they were the cause of the pain and could be fixed up somehow. All that flexibility that she worked so hard to get back was gone now and the physio began again. Just like before she worked hard to get it back to good flexion and was pretty successful but the pain just wouldn't go away. Back and forth to the or-tho doc and no relief was in site so we loaded up and headed for Dogpound South while we waited for the next steps. At this point there was still a lot of hope that the pain would get less and less as the days went by. We had Brenda's horse along with us and the folks we bought her from agreed to put a few rides on her so that she would be ready to go when Brenda was ready to go.

Pretty soon we were into January and instead of getting less and less the pain was getting greater and greater. At this point this active young woman was relegated to spending most of her day inside and flat on her back. 

Midway through February we headed to Jamaica where our daughter Lacey was getting married. We had a great week with Rebecca, Lacey and their families but this issue Brenda was having sure put a damper on her fun. The resort was so big that we rented a wheel chair so she could get from place to place without wearing herself out, but nevertheless there was a lot of walking and walking isn't a great activity when you are having leg problems.

Once we returned from Jamaica Brenda headed back to Canada to consult with her GP and I took that cue to call the or-tho folks and tell/ask them my opinion and managed to get her an appointment there as well. After a look at her knee and some thought they decided that the knee was actually working as advertised and the pain was caused by some other issue.

Now I have characterized this issue as one of mainly pain, but there was still an inordinate amount of swelling and pressure that is pretty hard to describe, but the or-tho folks thought it would be worth consulting a Neurologist and managed to get Brenda right in to see that fellow. He ordered a series of tests, scans, and blood work and she had all of those things done before heading back to Dogpound South 5 weeks later.

She really just came back to travel north with me. Since this problem has manifested itself she usually fly's as driving for more than an hour at a time causes considerable distress. We had made plans to stop and visit our friends the Modahls along the way and do some riding (me) around the Grand Canyon with the Pohl's. All the years we had been going south we had never managed to get to the Grand Canyon and thought it was about time. Then we had planned to spend some time riding our way up through Utah before heading home. However the pain written all over Brenda's face led me to suggest once we saw the Grand Canyon to load our ponies and head north, and that is what we did, racing towards the border.

The follow-up appointment with Brenda's neurologist gave us some answers, not the ones we wanted, but answers nevertheless. It appears that the cause of all this agony is a rare condition called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). Something like a million folks are affected by this horrid condition which is caused by some sort of trauma to the body. Whether that trauma be something as simple as hitting your hand with a hammer or in Brenda's situation a major joint replacement it seems to tell those pain receptors that send a signal to your brain that we have a problem down here, get stuck in the full on position.

When your body is in pain a whole serious of processes start to take place to help you deal with whatever is causing that pain. The affected part swells to protect the injury, blood flow is increased to that region to assist with the healing. But remember there really is no injury the receptors are just stuck in the on position, so all that swelling and blood flow doesn't help the situation any and just cause more issues.

Now as I can only relate what I see and can't imagine the pain levels, my account of this journey is lot more clinical than it really is for its sufferers.

Brenda tells me that she has a lot of nerve pain, as well she feels a crushing pain in her leg and a cold burning sensation in her leg and foot. Sounds simple eh! Well after only watching this brave woman go through this for over a year now I have racked my brain to find a way to describe what she is feeling that will relay just a little bit of the agony that is her day.

Imagine you have that crushing sensation in your leg, doesn't seem so bad eh! Well maybe imagine you are laying on the pavement outside your house and one of those rollers they use to pack that pavement is slowly, very slowly, starting at your toes running up your leg, over and over and over again.

The lightest touch is painful, the brush of your clothes, the bump from your grandchildren rushing to hug you. Even the thought of someone getting close to the affected area is painful. You become hyper-vigilant and very protective of your personal space.

As for the cold burning sensation, that was easier, I have had frostbitten limbs, and know the sensation of burning that the cold brings. For those who haven't imagine standing in a tub full of dry ice and not being able to jump out. Just stand there, forever. The difference in frostbite you actually go number with this you are not so lucky.

All these things of course precipitate other things to happen, your body no longer regulates your temperature properly, you get the sweats, I mean water running down your back sweats, your feet freeze, you get overheated on a cold fall day. I think I am missing a bunch of things here but it is a syndrome I, or Brenda, wouldn't wish on our worst enemy.

If you have ever been to a hospital with a painful condition they usually ask you to describe your pain on a scale of 1 to 10. This scale is actually called the McGill Pain Scale. All the graphics I can find with this scale put this CRPS/RSD stuff right at the top. How can I make it relatable, well for you mothers it might be a little simpler, imagine childbirth with the drugs, they tell me this is 25% worse. for us guys it is not so easy, imagine you broke your leg well that is something like 40% as painful as CRPS. Seeing the numbers does not do it for me, does not really tell the story but the one thing that stands out is no matter what the pain number is this is the most painful form of Chronic Pain that exists. It ranks far and away at the top of the many scales I have looked at. And that ain't the worst part, besides the fact that it is invisible,

IT NEVER GOES AWAY AND IT MIGHT NEVER GO AWAY!


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So why after dealing with this CRPS monster for over a year I have chose today to dump these agonizing stories on you guys, well November 2nd is the first National CRPS awareness day and I wanted to do my part to share some knowledge of this invisible monster that stalks amongst us.

Orange is the colour that has been chosen as a symbol of this disease because orange is the color of fire and this syndrome is sometimes called the burning disease. and on November 2nd I will be wearing my orange garb. For you, and to a certain extent me, we get to take the orange stuff and put it back in closet when the day is over, but for the sufferers of this syndrome they NEVER get to forget that crushing, burning sensation.

Thanks to Janna for her blog dealing with this issue also

For more information just search CRPS on the web and you will be inundated with links like this one

#CRPS, #CRPSawareness

14 comments:

  1. Oh! I am so very very sorry. It is good that you wrote this to give honor to Brenda's strength in the face of this horrible condition. I had never heard of such a thing, as I would imagine others have not. I can't imagine no cure, no relief. Hopefully something will come to help.

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  2. I am so sorry Brenda and you have to go through this. Life is so hard sometimes. I'm glad she has you for support. Again, wish there was something for you. Wow, what a painful disease. So sorry.

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  3. As you know Brenda I read up on this previously when you provided me the link one day..but I have to tell you I was shaking my head that day wondering how anyone could cope with this...After reading JBs blog here today I have a total different understanding...the living with it side (non medical) my heart breaks for you sweetie....I will be wearing orange!!!

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  4. We cannot possibly imagine this condition you are living with, Brenda. Reading the blog sure makes one better understand your awful journey, these many long months past. Is there little the Doctors can do? Is this pain something you must live with going forward? How you manage to solider on is unbelievable. And we hope the Doctors can bring you some pain relief...and soon!

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    1. I guess you live with it because you have no other choice. But the more folks who hear about it the better the circle of knowledge becomes. Wear your orange. I might have to borrow some from Croft, he probably has closet's full after the election.

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  5. I feel so very sorry for your pain. I really cannot imagine it. I had shingles with a lot of pain but that went away. Hope against hope..I wish a recovery for you. Will keep you in my thoughts.

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  6. I am not a regular reader of your blog, but for some reason the title caught my eye on judys page. Now I have a name for what I feel! A year and a half ago I had surgery on my right inside ankle for a small (pencil eraser) Basel cell cancer. The wound was open for over 4 months and I am left with a horrendous scar and the pain you have described. I was not given correct after surgery instructions and that seems to be what has caused this. My foot , by the 3rd day, was terribly swollen and it's been said that the swelling is what causes the nerve damage. It's exactly as you have described for what is the issue with your dear wife. Thank you for being such a good partner for her and for your empathy. I wish her peace and no pain soon! One thing you didn't mention is a spinal nerve block. It might be something for you to research and discuss with her physician. I had two with no success, but don't be deterred by that!

    God bless you both!

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    1. The general consensus is nerve blocks have no positive effect on this condition, many have tried with no relief, but we will continue looking for a solution

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  7. Very well written John--Brenda is one strong woman to withstand what she has over the last two years. She is to be admired!

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  8. Our thoughts go out to you both and we can only help by keeping you in our prayers.
    Kathy was in severe pain the first year we were able to go south for the winter. Due to that pain we almost came back home early. With further testing it was determined to be Diabetic Neuropathy.What the doctor chose to do was to try a medication that was being used to treat Fibromyalgia. The medication is called Lyrica. Both those medical problems have similar sympthoms to what Brenda has by affecting the nerves sending false readings to the brain. The medication has to be slowly administered in small doses until it is built up to the point of giving the patient some sense of relief. Kathy still has minor pain that she feels but she didn't want to feel spaced out which is the sensation she experienced each time the dosage was increased. Also if the pain were to increase there would be room for an increase of the dosage. A drawback is that if they patient has to be taken off the Lyrica they have to be slowly stepped down.
    Many physicians are skeptical about trying meds that only approved for other conditions. Sometimes further comparisons and a suggestion from the patient might just have them trying a different path to help solve the problem for not just one person but possibly many.

    It's about time.

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    1. Yep, she has tried Lyrica with no success. Her docs are at their wits end and although they are willing to try most anything we have run out of ideas.

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  9. Our thoughts go out to you both and we can only help by keeping you in our prayers.
    Kathy was in severe pain the first year we were able to go south for the winter. Due to that pain we almost came back home early. With further testing it was determined to be Diabetic Neuropathy.What the doctor chose to do was to try a medication that was being used to treat Fibromyalgia. The medication is called Lyrica. Both those medical problems have similar sympthoms to what Brenda has by affecting the nerves sending false readings to the brain. The medication has to be slowly administered in small doses until it is built up to the point of giving the patient some sense of relief. Kathy still has minor pain that she feels but she didn't want to feel spaced out which is the sensation she experienced each time the dosage was increased. Also if the pain were to increase there would be room for an increase of the dosage. A drawback is that if they patient has to be taken off the Lyrica they have to be slowly stepped down.
    Many physicians are skeptical about trying meds that only approved for other conditions. Sometimes further comparisons and a suggestion from the patient might just have them trying a different path to help solve the problem for not just one person but possibly many.

    It's about time.

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  10. I also take Lyrica for diabetic neuropathy.. I take it mostly at night as it takes me a while to clear my senses in the morning.. Stuff is really expensive down here.. As Rick explains once on it it is hard to get off.. This is one of the reasons for the trike motorcycle.. Still it might be worth looking into... Until then, I love you guys as friends and will keep you in my prayers..

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    1. Lyrica was no help for what is bugging Brenda, thanks for your thoughts and prayers though my friend

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