What? It’s been a year? Feels like twenty….

Well actually, it has been over a year now that I have had this syndrome, disease, dystrophy, whatever…I remember at the beginning the doctors telling me it was a good thing we caught it early because now we had a good chance of this thing going into remission. But the same doctor told me CRPS does not spread from the original site as I was pointing at my swollen and purple feet and legs that had lost most of their hair. Now I know when it is going to spread by a severe burning pain in a new area on my body. It is pretty much everywhere now. My ribs, chest, neck, face…you get the picture. I have been on several pain meds. The one that actually worked the best for the deep bone crushing pain was the Fentanyl patch. Ten times stronger than morphine, ya baby…But I had too many problems with the patch not sticking properly and issues with when the weather was hot. When my body temp when up, I got too much of a dose…not good. So I had to give that up and go back to Nucynta, which works ok, but not as good as that patch! I’m also taking 600mg of Lyrica still and Amatriptilyne at night. All this manages my pain at about a 4 or 5. sometimes a 3, on a really good day! But it has become my new normal. I can’t remember a day without pain so you sort of get used to it. But sometimes I will have flares. That is when the pain just goes crazy and the meds don’t really help. They can last a couple of hours or a few days. Fortunately I have learned what causes them and I don’t get them as often. They can be brought on by stress very easily, so I gotta keep cool at all times hehe..Also, certain music. No country / western! LOL! Barometric pressure changes. Can’t do much about that one. Cold fronts kill me though. So winter sucks. Wonder if I can get a prescription to move to Hawaii?

So anyway, things have gotten worse in some respects but my hand is actually better as far a mobility. So that’s something. As most of you know I saw a neurologist that was supposed to be promising. Well after all those ‘likes’ on FB it did not work out for me. His diagnosis was way off base and I will just leave it at that. Needless to say it was very frustrating. I now have an appointment with a Dr. at USC very soon. He is a specialist in treating CRPS so we are hopeful he might have some creative ideas. What I am really trying to do is get away from popping all these pills. I mean I know at this point I am dependent on the opioids so that is going to be a tough one and Lyrica has withdrawal symptoms too. I’m gonna be one strung out spaghetti mess! But I look forward to the time I can get off this shit. Being in a foggy pain place all the time sucks!

So I went to a CRPS conference up in San Francisco last month. It was well worth the trip. Learned a lot about some alternative treatments and the use of opioids for pain management and how they eventually will make you more sensitive to pain. Hmm. Met a lot of really nice people all going through the same thing as me. Some way worse off than me yet they were able to come anyway. Amazing! It really opens your eyes when you get around other people that are going through the same thing. You know your not crazy for feeling a certain way or a certain thing. And everyone was so nice! Here there is a room full of people in horrible pain and everyone is happy to be there…I took a lot away from the conference…and I didn’t take any notes…

So I think this thing has changed me. The meds for one thing. I can’t remember shit. I forget peoples names that I have known for years. I start a conversation I can’t even finish. I’m talking a lot, but I’m not saying anything! Oops, sorry…Talking Heads creeped in…but it fits beautifully! They say part of that is due to the CRPS and not just the meds…ok. One thing I noticed is with the very little driving I do is I don’t care if someone cuts me off or does something stupid. I just wave a smile. Normally I would have the finger out with a vengence and would be spouting things like “stoopidmuthurfukurpeecofshhiittt!!!” But not now, gotta stay cool at all times…..Peace…

 

 

 

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The follow-up appointment

So just a recap, as a result of an overwhelmingly fantastic response, I was able to have Dr. Amr Al-Hariri treat me for no charge at the Templeton Institute for Neurology. So the first thing I needed to do was get 3 MRI’s done; brain, brain with contrast, and c-spine. I had those done last Wednesday and the hardest part was I had to wait until yesterday to find out the results. So Kathleen and I went and sat down with the Dr. and he started to explain what the results were from the MRI’s. Good news is they did not find anything conclusive in my brain right now (but of course we all knew that ha!). However, they did find a lesion at about the c-4 area on my spinal cord . A couple actually. One long one and a couple shorter looking things. What does this mean you ask? So did we…It means for some reason the myelin, which is the coating around the spinal cord, is wearing in that spot. Think of a electrical wire and the plastic cover. The cover is worn away in that spot exposing bare “wire”. Just like an exposed wire, this can cause an electrical interference or short causing tingling in the arms or hands and legs. Burning, sensitivity to touch and cold or hot. Muscle spasms, incontinence (my personal favorite)…What causes these lesions? A list of a lot of possibilities. So I have to have some blood work done to eliminate all those such as: Lupus, Lyme disease, heavy metal poisoning blah blah blah…These are basically autoimmune diseases, the body attacking itself. If the blood tests come back negative, There is a real possibility I have MS because I have some other symptoms that point to it such as: Trigeminal Neuropathy (severe nerve pain in my face and jaw, awful), tightening and nerve pain around my ribcage (known as MS hug) usually due to lesions on the t-spine area so I am getting an MRI for that on Wednesday. Still, if all this pans out, he still wants to do one more test…you guessed it…spinal tap (turn it up to 11). NOT looking forward to that AT all.

So when all is said and done and he comes to the conclusion I have MS, that still doesn’t explain the swelling and pain in my feet and legs. That could still be crps. I could have both. This MS thing was just caught on the MRI and because the facial pain and rib pain was new.

But upon reflection, 5 years ago I saw a neurologist complaining of facial numbness and eye pain. They did an MRI on my brain and found nothing and diagnosed me with partial simple seizures. They did not MRI my c-spine though…..Hmmmmm, I wonder…..

Anyway, besides all this, Dr. wants to take me off all my meds and start from scratch…um, what? He is going to wean me off nucynta first with the aid of the fentanyl patch (oh, ok whew), then amatriptilyne, then lyrica. He says I will probably be in pain (ya think) but the fentanyl should help. Then he wants to try some different options for the nerve pain, but it all depends on what the MS out come is. As always, I will keep everyone informed. The ride continues…

Side story: Appointment with Pain Specialist today…

Saw Dr. Cannon today for my usual 4 week check up. the only difference was today I was going to tell him about all the stuff that has been going on and the plans Dr. Amr had for me, which didn’t include him. Usually the appointments are the same. He comes in, asks how things are going. I say the same. He asks if I need any meds. I say yes or no. I bring up some drug I heard about that may help crps pain, he says he never heard of it and if it is not fda approved he can’t do it. Then I leave…BUT NOOOOOOO! Of ALL DAYS! He is all excited to tell me about some Alzheimers medication that they have used on some crps patients with some success and he wants to try it….ARE YOU KIDDING ME? I deflated this guy in about 3 seconds. He totally understood that I need to follow this path. He said I could always come back if I needed to. I felt so bad though, and I am kinda interested in this medication now…Anyway, the day is over. Need to wind down. Off to Daou Vineyards with my love…..Jon   

50 likes = New Neurologist

I know it’s weird, but that is what went down.

Most of you reading this took place in the event, but for those who don’t know about it I will summarize:

I have not been happy with my current neurologist because he just doesn’t seem interested in treating me any further. Now that my symptoms have gotten worse and have begun to spread, he just won’t believe that it is possible CRPS can spread to other parts of the body even though there are countless articles by doctors talking about it about it.

Anyway, I was at a my neighbors house watching the Niners lose the Superbowl and he had a friend there who worked for a neurosurgeon in the area. We got to talking about my condition and she recommended I go see a particular neurologist here in town and told me how great he was.

So the next day I did a little Google research on him and decided to give the office a call and set up an appointment. My wife and I got there and were greeted by the doctor himself, kinda cool and we sat down in the exam room. He wanted to hear how I got the diagnosis and why I wanted to him. Then he sort summarized my story into one short sentence and said “that pretty much sums it up right?” I didn’t know how to answer, feeling he left out some key points. Then he said ” I’m not convinced you have CRPS”. I said well that is what I have been treated for up to this point so…He said “I consider this case a second opinion and we do those for free. We do not go through insurance. All you need to do is tp post something on the Templeton Institute for Neurology FB page, have 50 friends like it AND our page as well, and I will treat you for free”. Ummmmm, ok? Needless to say, we thought this was a little strange. But he said it creates goodwill. On we go.

He then examines me and is concerned with various things such as my tongue shaking when I say ahhhhhh, the neuro pain in my face, pain in my eye…He then says “hmm, maybe you do have CRPS, but I think something else might be going on. I don’t mean to scare you but MS could be possible”. I’m not scared, I have heard that before, when I was having numbness in my face and arm issues (right side) awhile back and they said it was partial simple seizures, they checked for MS and decided it wasn’t. I told the new guy that (Dr. Amr), he said well, if you get the 50 likes we are going to do MRI, MRA on your head and spine first and go from there. Done deal, no problem. And it wasn’t.

Because Kathleen and I have such great friends, I think we hit 50 in 1 1/2 hours once the word went out. We ended up with a total of 95! Quite a few came from total strangers, friends of friends. It was amazing…So I go for my MRI stuff this Wednesday and I have an Appointment with Dr. Amr the following Wednesday for a follow-up. I will keep everyone informed via this blog once I get information. Peace.

Jon 

 

 

Goodbye 2012, Don’t let the door hitchya…

Well Happy New Year everyone! I trust all of you are well into your resolutions and have already abandoned some by now. That’s why I don’t make any, or at least I don’t announce them. That way if I happen to pull something off I can say “yeah, that was my resolution uh huh’…

So we spent Christmas with my brother and sister in law this year which meant traveling to Rancho Cucomonga and Kathleen is doing the driving because I am on pain meds all the time. For the most part the trip went pretty well. We did have a couple of moments of slight terror which caused my symptoms to flare and Kathleen to exhibit minor road rage but all was forgotten in the end. 

We had a nice time with visiting everyone. I was particularly grateful because I spend a lot of time cooped up in the house so it was nice to get out and about. It gets really old sometimes sitting around the house in pain feeling useless. 

From Rancho Cucomonga we headed to San Pedro to surprise Kathleens’ Mom with a visit and check out her new house. She was really happy to see us and her new house is great. Just 3 houses down from my sister and brother in laws house. So that night we had a BBQ at my brother and sister in laws house and saw friends we haven’t seen for awhile. Good times. Everyone was curious about my condition and I had to tell the story several times. Oh well, I’m glad they care…

So now the Holidays are over and back to reality. Seems 2012 is just carrying right on in to 2013. Due to my health, I had to apply for social security disability. Something I never thought I would have to do in a million years. So I am on my way to becoming one of those 47%ers, maybe…I got notification that I was denied last week. Apparently this is normal. So I have applied for a reconsideration. If that gets denied then I need to get an attorney and have a hearing. Apparently that is when most people get approved. Just a little game called bureaucracy…

So how am I doing you ask? Well, the symptoms themselves have spread to other parts such as my sides and my neck and face now. My left hip as well. But good news is the mobility in my hand is better. I can make a fist most of the time, although the pain remains. I am in physical therapy 4 times a week. I had to stop the aqua therapy because the water was just not warm enough and it would just cause too much pain. I hated it anyway, it was like you were in a fish tank on display for everyone. Like Seaworld…”Oh look, he’s doing leg kicks!” After every exercise I was waiting for an anchovy…

Anyway, as always I thank goodness for my rock, Kathleen. Also my support group every third Tuesday. And good friends and family, never take them for granted…

That’s all for now! Until next time, peace…

Jon

 

 

Hello, how are you? Have you been alright?

Man, I can’t believe it’s been 2 months since my last post. What a lazy SOB huh? Well, fact is I just haven’t felt like writing. I mean, I’m not going to post stuff just for the sake of posting like ” I had breakfast today. Eggs scrambled. It was good…” Anyway, sorry I have been slacking lately,  do you forgive me? Like I care… 🙂

So let’s see, I had the manipulation done. All is still going pretty well with that. I am getting more range of motion with my shoulder every week. I did have some lag time where I wasn’t getting any therapy because I ran out of authorized visits and the insurance company too forever to authorize more. They completely cut me off from any more hand therapy visits. I had to write a letter of appeal for that. Still waiting to hear. I started aqua therapy for my feet and legs. I get to go in one of those underwater treadmills. There are some issues though. One, I seemed to have gained some weight from the medication I am taking (35lbs). Had to try on several bathing suits till one sort of fit. I seemed to have built quite a roof over the garage if ya know what I mean…Two, just how much bromine do you really need to put in that thing. I smelled like a swimming pool for two days! Three, when they tell you “don’t worry, the water is 92 degrees” it sounds good at first, but it really isn’t that warm. It needs to be like 100 degrees, like a hot tub! They said they can’t turn it up that high because it is too hot for the elderly. Wimps…

So I hope everyone’s’ Holidays are going well so far. I thought it would be a good idea for me to cook Thanksgiving dinner because I was feeling pretty good. Well, I bit off more than I could chew and ended up with a bad flare up that lasted for over a week. I was experiencing new pain and burning in different areas and everything. Not good. Things are pretty well settled down now. I just need to be careful I guess. Otherwise things are pretty much the same. Still taking a fistful of pain meds to keep things manageable. Dealing with some side effects like zombie states and the weight gain. Sleeping issues have been real bad because for some reason the pain is worse at night. So I average about 3-4 hours a night. So I do get some naps in during the day sometimes. Or I just fall asleep at the dinner table. I dozed off in front of the computer and Kathleen had to wake me up! It is a miracle if I sleep through the night. I can’t remember the last time that happened, but then again, my memory is shot as well.

I can’t believe it has been 10 months that I have been fighting this damn disease. I thought for sure remission would have come a long time ago. This is one stubborn mother f#cker.

Jon

 

 

 

 

 

 

 

 

Manipulation Day

Sounds like some holiday. Well, not exactly…

So I finally had it done! The manipulation under anesthesia for my frozen shoulder. After many cancellations and postponements, the planets aligned and the date was set with no hitches this time…….so we think…..We are to be at the surgery center at 6:30am and the procedure will start at 7:30am. I have not gotten out of bed before 10:00am at the earliest since I got this disease! Sometimes I am not getting to sleep until 4:00am! Anyway, I drag my ass out of bed and we get there right on time. The gal at the check in window says I will be taken back soon and they will do the manipulation which will only take 10 minutes or so and then when the anesthesiologist gets here at 9:00am he will do the nerve block………………………………….Now, if you guys have been following this story, the whole idea of the nerve block is to reduce pain associated with the manipulation. Therefore, it needs to be done BEFORE we start! Well, the gal doesn’t know what to do. She says the administrator will be in soon and we can talk to her. UNBELIEVABLE! So the administrator gets there and explains that the anesthesiologist didn’t want to do the block beforehand because he was afraid the anesthetic would get disturbed during the movement of the arm. PLUS, he was coming from Santa Barbara. So, I am here, my ass out of bed at 6:30am, lets just do this.

I like the surgery center. It is quiet, they give you nice warm blankets that come out of a food warmer like cabinet and make sure you have enough pillows. A far cry from the hospital. The nurse comes over and tells me she is going to hook up the IV and asks me where I prefer she put the needle. I really don’t care, what ever is easiest for her. She says she finds a nice vein on top of my left hand. Great! Should be easy then…………you would think so, I mean, how many of these do you think she does in a day. So she starts, I sense some trouble. I ask her if she got it and she says “I think so, lets try it”. Encouraging. So she starts the drip and I see its not working by the blister forming under my skin. She says “nope, missed it”. No shit. So she has to pull everything out, bandage me up and find another spot. “Lets try the bend in your elbow”. O.k. “I found a smaller vein, so I can use a smaller needle”. Fantastic……………………Hows it going? “Good, just don’t move”. At this point my arm is hanging off the bed, not to comfortable. I ask can I at least lift my arm on to the bed? “Well, O.k., just be careful not to move anything. It is barely in there”. WTF?

So the nurse anesthesiologist comes in to tell me about the general anesthesia I will be under and that they will give some propofol first for anxiety. I thought cool, because I didn’t have any until I was treated like a pin cushion. Then, the NA looked at me and said “don’t I know you from somewhere?” I said ya, from here. I had my shoulder surgery done here in March. She said “Oh ya, I remember you. Well, you’ve got great hair”………..I said oh, thanks…….I have never had anybody EVER say that to me. I consider my hair average at best……..so bizarre……Please give me some propofol……………..

Now we are in the OR and suddenly my left elbow where the IV is starts burning like crazy. I tell the NA and she comes over and looks at it and swears under her breath and takes the whole thing out. She then says she needs to put it in one of my feet (cause they are running out of holes). Problem is, I have CRPS in both feet! This could be a problem. So I tell her hook me up and juice me as soon as you can with some good stuff. Next thing I know I am waking up in recovery. I am pissed off because they haven’t taken me back for the manipulation yet. I could tell by the nurses laughing It might have been done already. My bad.

Now I am waiting for the anesthesiologist to get there and do the nerve block and he gets there within 5 minutes. So back to OR we go, more propofol, count backwards……..Again I wake in recovery, feeling no pain. The anesthesiologist comes over and looks at my right eye and says “yup, we got a good block, your eye is bloodshot”. Side effect of the block. So I go home and pretty much immediately sleep for about three hours. I wake up and don’t feel much pain, my CRPS is not acting up abnormally from the trauma, so far so good.

In the morning I go to physical therapy for my shoulder. First thing we do is take some measurements to see how much more range of motion I got from the manipulation. It looks like about 50% more all around, very good. Then she bends my arm a little more in different positions until I tap out and we are done for the day.

Now one thing I am noticing as well is I seem to have improved range of motion in my hand. I can bring my fingertips all the way to my palm! almost a fist! Also, I can bend my wrist back and forth without pain. Apparently this is all do to the nerve block. I am getting  longer relief this time it seems. This good! I go to hand therapy on Friday and the therapist is blown away! So we made some good strides  with the hand as well. Now, there is no telling how long this will last, but my pain level all around seems to much better. Going from a 5 or 6 to a 3.

So, last night I did have some raised level of pain in my left foot which was discouraging. But it didn’t last as long. And today my right arm muscles are pretty sore as expected. As a result, my hand is pretty swollen. But pain seems to be ok. Keep those fingers crossed…Jon

 

 

 

 

“No pain, No gain” or “My, what a lovely smoke ring”…

 

 

So every now and then I am lucky enough to have days when the pain level is quite low. So below is a story of how over exertion can really cause things to flare up quickly with CRPS. Or as I like to call it ” risking it all for a slab of meat”…

Well, I had two really good days in a row! I was telling my wife that my pain level was low,my hand was not too swollen, my feet did not hurt too much…What does this mean? Kathleen took it as  “maybe this is a sign you are getting better!” I said hmm, not sure about that…Being the eternal pessimist, I took it as a sign that I am due for a doozie of a flare.

Now hear me out…What do you do when you feel good? You over do it! At least I do…I took on the task of smoking a brisket yesterday…Takes like 12 hours, at least! Start the fire, add more coal along the way, about half way through wrap it in foil, add more coal…Had friends over to share the fruits of this labor, which came out very good! But I was done…Covered in ash, smelling like smoke and hot…Today I am paying for it with prickly pain all over, swollen feet and a hot knife through my hand. Ahhh, the toils of smoked meats is bittersweet…indeed…Jon