CRPS

[NS'Creter]

My condition has taken on some new twists. All through this my skin sometimes becomes discolored, but not permanently. This has become more frequent and more widespread. There have also been areas of extreme sensitivity where my skin actually hurts. This has been most common in the shower when the water hits me. Well, lately, this too has become more frequent and widespread and painful. It feels like a really bad carpet burn X 100...if that makes any sense?
My doctor has changed my meds again. We're still trying for as much relief as possible. I have a patch now. It releases the junk into me constantly and steadily. Because the Oxycontin is so addictive she has me still taking it as well but the dosage is about half of what I was taking. This is to hopefully wean me. I also still have the Dilaudid for "breakthrough pain". I never had much of a tolerance for meds but none of this has given me total relief and certainly no "buzz". Strange huh?
I wonder what's next?

[aynet]

Trevor, that's tough, man.
I don't know what to say except that you have to hang in there.
And, I'm still praying for you!

[Lindy]

You seem to be traveling down river that keeps branching out in different directions. I think they need to change the name CRPS to CRaPS ... due to your multitude of painful symptoms and syndromes.

You have become my hero; exhibiting more strength and courage than anyone I know, while hanging in and hanging on. Just goes to prove that you are a SURVIVOR. Certainly sounds as if the nerves in your body are becoming more and more hyper-sensitive ...sort of like a bad case of "Shingles" where shower water hitting body, clothes touching skin, or even a bed sheet can cause extreme unbearable pain upon contact with skin (my mother has had "Shingles" on a few occasions in the past); thank God there is now a shot that provides her with immunity for getting shingles ever again. Maybe you have "Shingles?"

I know there is a nerve condition called "Paresthesias" (or maybe its Parenthesis) ... I was once told that the pain is like being stuck by thousands of burning pins and needles, where anything touching skin causes undescribable pain in the effected areas which can expand out over various parts of the body. I don't know what the cause of this condition is though. Could you have this?

There is a saying "I feel your pain," but that is about the stupidest saying there is sense no one can feel the pain that another person is going through or trying to cope with.

You are in my thoughts and prayers that there is cure for your condition, or at least a treatment that allow you to gain some sort of relief. Drugs only mask the problems and alieve the symptoms to a certain degree ... on that subject, every time I see a commercial, read the cautions on a medicine bottle, or see a drug/medicine ad in some magazine, where the side effects could be worse than what ails me, I wonder about whether I should take particular drug/medicine or not.

Lindy

[NS'Creter]

CRAPS ;D Yup! That's the ongoing name for it with us. It sure has been quite the ride. Very exhausting.
I've been told that skin symptom has been compared to Shingles. It is a common symptom of the condition. Some folks get considerable swelling but, thankfully, I haven't had that. I've had my skin seem "dead"...it gets stiff like the skin on a dead person. I've had it change color and I've had it be very painful...but no swelling. It's not constant like my other pain so that's a good thing too.
Thanx for the kind words, well wishes and prayers. It means a lot and helps.

[Lindy]

How is it going with your CRaPs (our new term for your CRPS)? Did you get past the painful/shingles like skin condition? Just wondering how you were doing ... better, worse, or about the same.

Lindy

[NS'Creter]

Oh, it's about the same. It comes it goes and sometimes it's worse than others. The tremors have become more frequent and stronger. That's very embarrassing when anyone sees it. Josh, my son, calls me "Jackhammer Legs" when my legs start up. I suppose that's a good name for it 'cause sometimes when I stand up that's pretty much what happens. You all have experienced a nerve jumping when you're asleep or almost asleep I'm sure. It kinda jolts ya a bit. Well I get those when I'm awake...I can be standing or layin' down and it's like a frickin' full body spasm. I've spilled drinks and stuff when it happens. All I can do is make light of it though...try to get a laugh from it. ;D It's very amazing what is affected when there's nerve damage. Interesting at times I guess.

[NS'Creter]

Well, the appointment is set. I go on the 16th to give that Photon Treatment a try. The doc says I've got about a 60% chance that it'll help me. Each treatment takes about a half hour and they can do 2 per day on me. He wants me to have 8 treatments for this first round. He can tell if it's workin' after 3 and if it's not we'll stop. There's no way to predict how much of an effect it'll have and no way to know how long the effects will last. The only guarantee is if it works at all I'll need to continue the treatments at whatever intervals I require to maintain the effects.
When I have more details of the process/treatment I'll post 'em.

[Lindy]

I am praying for the success of this treatment; hoping that it relieves the debilitating pain that you have been living with for so long. If I knew where there was a field of lucky 4-leaf clovers I would pick a bushel of them for you; sending by Fedex overnight so that they would arrive before your first treatment tomorrow. Keep looking ahead, keeping the faith, that there will someday be light at the end of the dimly lit tunnel you have been coping with. God bless you and your family.

Lindy

[NS'Creter]

Thanx so much Lindy.
The plan got changed just a bit. The doctor's office was havin' some 'puter issues and it's illegal for them to work on anybody without access to their records. I hadta ask,"What ever did we do before computers?" ;D So, anyway, my oldest son (Ken)and I are in a hotel room in Sydney and my first appointment is tomorrow mornin'.
Sandy, my wife, couldn't take this much time from work so Ken is the lucky fella who gets to babysit me. I'm very happy to have this time with him as we don't see him as often any more.
Hopefully, I have some good news and interesting info to share tomorrow.

[Lindy]

You definitely seem to be on a merry-g-round that is not "merry." Must have been in pretty rough shape for your wife to have called an ambulance to take you to hospital; you're condition at the time obviously scared her.

Please don't resolve yourself to believing that things can only get worse. Modern medicine progressively marches ahead at a rapid pace, in relation to treatments and/or cures. Ailments, organ failures, diseases, lifelike prosthetic limbs that operate like real ones, and even certain types of cancer that were unrelievable or incurable only a few short years ago now have successful resolutions due to modern medicine, allowing people to resume their lives/living them to the fullest in the company of their loving family and friends. Now is the time to be stubborn, grit your teeth, and keep telling yourself that you can and will one day put this traumatic/painful nightmare behind you... don't give up or give in!

Personally I think if you had a fulfilling purpose, something that you could focus you mind on, rather than just your condition, you might find a glimmer of light in "mind over matter." Maybe you should spend some time on "google" researching topics of: concrete coating consults, decorative concrete consultants, architectural concrete consultants, parks & planning consultants (since municipalities frequently hire consults to provide them with material specifications and plans for public facilities), etc. Read the websites of these types of consultants, make notes of the highlights/services they offer/etc ... then, designing your own website, maybe enlist the assistance of a web tech friend. Next, acquire a list of gc's, municipalities (parks/rec) in your province, hotel/motel chains, etc. and use the internet to send them a brief letter of introduction inviting them to your website to learn more about the professional consulting services you offer. These types of entities take your plans (individualized to address their needs), write up their invitation to bid based on them, and then send them out to acquire bids on specific projects. YOU could DO this (be a professional consultant, operating from your armchair/couch/or sitting in bed). Your creative/artistic talent in the area of design, combined with hands-on knowledge/experience in the industry would put you a step ahead of many of these so called consultants who have never had their hands dirty and have no inside/insight as you do. Think about it!

Take care, God bless you my pen-pal (internet) friend (since you detest telephones :>)

Lindy A.

[NS'Creter]

Can only give a quick brief of my day right now : The first 2 treatments are done. So far there's no effect...nuthin'. Doc said if there's still nuthin' tomorrow he wants to move onto other methods. The next thing will likely be nerve blockers and I'm not certain how I feel about those. I gotta go right now.

Thanx Lindy, that's some cool ideas. I'll be back later.

[Lindy]

Well, today is Friday, any change? Did the first 3 treatments do anything? As for "nerve blocks," that sounds like a a promising statement in theory... my mother's doctors' did a nerve block on her hand due to extreme/ongoing pain that radiated up her arm (nothing else had worked). It was successful, but they had to keep poking around in there to find the right nerve/nerves to block and could not give her anything to deaden the pain associated with doing so because if they did they wouldn't know when the found the right nerve/nerves to block. I hope if you have to go the nerve block route it works for you!

Lindy

[NS'Creter]

Hi folks! Well, the Photon Treatments were not successful. We did one round of Nerve Blocker which is a series of needles shot directly into the painful spots and hopefully the nerves. I stopped counting at 24 shots, but they didn't bother me. Unfortunately they didn't help me either. I go back for another round of that on Tuesday (just a day trip) so those ones make "take". It wasn't a total loss because I got to spend some one-on-one time with our oldest son, Kenny. It's been a long while since I had that priveledge and enjoyed it very much.
Thanx so much for the support, the well wishes and the prayers folks. It means more than you may know. I consider myself blessed to have friends and family that continue to do these things and a doctor who is committed to finding something that will work for me. We'll just keep on keepin' on I guess.

[NS'Creter]

I was wrong...wasn't today it's tomorrow I go for the next round.

[NS'Creter]

Hi folks. Another treatment update for ya. I went back to N. Sydney expectin' another round of the Nerve Blockers. Doc asked what the first round did for me, I told him "Nuthin'" so he wanted to move onto the next thing. I said that I'd never do it, but I'm desperate so we went ahead. He gave me a blast of Cortizon into my spine OMG!!! It hurt and it felt so wierd and it freaked me out. I can still feel it in me and I'm not likin' it. I'm supposed to feel the relief effect within 2 days. He wanted to do 2 more blasts yesterday, one lower into my spine and one into my right hip, but when he told me that those ones would hurt even more I chickened out. I said that if I got relief from this one I'd be more inclined to go for the other 2...proof is in the puddin' so to speak. The feeling of that thing snakin' up my spine really freaked me out. I can't believe that I wimped out, but I did. I wasn't worth 10 cents last night, probably from the trip and from the procedure and I'm not great today so the relief effects can't come too soon for me.
My 17 year old did the drivin' and babysittin' for this one so that's the plus at this point. I have the next appointment in 2 weeks so the results of this one will decide what happens then. All of this "hit and miss" can be frustrating and depressing but I know that it's also necessary. It still blows my mind that this was all caused by a dog.