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10/21/2010 02:51 PM

RSD Remission(page 2)

Lazy1
Lazy1  
Posts: 2771
Senior Member

Thanks Mike.

So, my new question is this. Is it possible to get your pain under control by taking the right combo of meds, PT, exercise...whatever it takes? Does that happen often? I suppose that it could happen. Then, at any time, the pain could come back the same or worse, right? Then you would start over trying to find med combo, etc.???

Thanks everyone for reading and replying. I'm just curious about these things. Maybe I spend too much time thinking...not sure.

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10/21/2010 04:14 PM
revvanbus
revvanbus  
Posts: 2032
VIP Member

The only time in ten years I have been in "remission

was in the few months I took out-patient ketamine treatment (three months?) My pain was not gone but with the pain meds went from 7-8 down to 2-4. For me, that was a kind of a semi-remission. I sure wish I could try the in-patient, non-coma ketamine treatent. I would like to report to the group my assessment of whether that really put me into remissionCool Might really see what it felt like to get my pain levels below 8 and to stay that way.Silly

Sending hugs and prayers to all!

Rev. Maryanne


10/26/2010 11:36 AM
thematrix777
thematrix777Posts: 297
Senior Member

It happens quite often from what I have personally seen. But, there are different levels of remission.

The reason you don't hear much about it is that when people go into remission, they go back to their old life's. I know several people that as soon as they felt better went right back to work and their old routines. Same thing happened with a group of teenagers I was following from their diagnosis through their treatments and into remission. The minute they went into remission, I can hardly get them to drop me a note. I miss them terribly but am so grateful they went into remission.

I was even asked to drop a person off my RSD mailings/blog posts. She said she did not want to be reminded of RSD and that whole part of her life. I thought that was really weird, but I don't know how I might feel if I ever got my old life back. I'd like to find out; maybe I would feel the same way.

My question to you is "What do you consider remission?". No pain? Anything under a 5 pain level? Getting out of your wheelchair? No longer taking pain medications by managing with alternatives? Cartwheels?

Today, I feel better than I have in 6 yrs. That doesn't mean I am pain-free. But, I am out of my wheelchair and can walk with assistance. I do not take pain medications; I use alternative methods. My hands are disfigured and my right hand is atrophied. I lost all my teeth but now have dentures; my jaw unlocked and I can talk again (really missed that one!) I still have problems sleeping and my memory has BIG holes in it.

So, am I in remission? Or, have I found a better response to the situation?

I wonder what the medical guidelines would be for saying one is "officially" in remission? Does anyone here know?

In my opinion, everyone has the potential for remission. Whether it is one day or one yr or forever. It is just finding the right combination; there is always hope. If I didn't believe that I would have given up long ago.Smile


10/26/2010 12:36 PM
Lazy1
Lazy1  
Posts: 2771
Senior Member

Thanks. I've wondered about this topic since I heard the term. You are correct in asking "what do you consider remission?" That is something that I wonder too. My opinion would be free from pain and also not taking meds or using a SCS or anything.

I would be happy to have the pain controlled enough with meds or treatments and not have an official remission, yet feel good.

I really appreciate everyone giving their opinion on this.


10/26/2010 10:08 PM
Mannis
Mannis  
Posts: 236
Member

with the help of an awesome dr, physical therapist & right med combo my pain got under control & now im med free except for the occasional days whn my foot starts twitching & wot stop so i take a med for it. good luck! Smile

10/29/2010 06:55 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Remission generally means free from pain and symptoms. I suppose for us it could also mean finally being able to tolerate each new day without intense pain. Instead of 7-10's, 2-3's. It's not actually a remission but could be the closest many of us could ever get.

Warm wishes,

~Twinkle


11/03/2010 12:48 AM
capecod84
capecod84  
Posts: 1820
Senior Member

The matrix77, the teeth falling out, memory loss, jaw lock, and inability to walk all came from rsd? How quickly was the onset of these symptoms? How did you fight them?

11/03/2010 07:16 AM
thematrix777
thematrix777Posts: 297
Senior Member

It took about 3 years to get to that point. I originally fought everything with drugs. I had a few SGB's that didn't work at all. Tried OT; didn't work.

I had a successful Trigger Point injection in 3-09 and that started me getting better. It opened up the blocked circulation, I weaned myself off all medications and taught myself how to walk again.

Turns out I had "opioid induced hyperalagesia" and the meds were actually making my condition worse. The teeth falling out was bad circulation. The jaw locking was a combination of things; with my teeth breaking, I stopped eating and you know how it is when you don't use something, it stops working.

I also have OA, spinal stenosis and degenerative disk disease so they all combined to make for one miserable time. I had very low calcium and potassium which also contributed to my problems.

The memory loss was due partially to RSD but more from the fentanyl; I was on 125 mcg every 2 days plus using fentanyl lollipops (plus 20 other types of medications). My neurologist says my brain did not set down new tracks when I was that over-medicated. It just shut down. I still have the occasional memory issue, simple words that just escape me, but nothing like before. The time gap in my brain I will never recover. The memories are just not there. Not birthdays, holidays, nothing.....

January is my 6th year with RSD. Today, I manage with only natural/homeopathic stuff. Like vitamins, minerals, hot wax, mirrorbox therapy, self hypnosis..things like that. My hands are disfigured and that won't changed, My right one is totally atrophied. But I am walking usually with assistance and I haven't used my wheelchair in a while now which allows me to stretch more and keep my muscles from dying.

Overall, life is good. I am mentally alert, no longer depressed,able to get occasionally with my husband which I hadn't been able to do in years and have found other things to do within my physical limitations that make it worth getting up in the morning.Smile


11/03/2010 07:43 AM
mike1024
mike1024  
Posts: 924
VIP Member

What medications can do to a person and yet Doctors keep prescribing them instead of looking to alternative ways to help the patients.

11/03/2010 10:55 AM
thematrix777
thematrix777Posts: 297
Senior Member

Mike: Any opiate has the "potential" to cause that problem. It was not evident in me for 4 yrs then they began to turn on me. Doctors fail to realize it is happening; they attribute the increased pain to the natural progression of your disease.

Just before I weaned off all medications (very carefully and slowly) there was no spot on my entire body that didn't hurt. Even my hair hurt..which didn't make sense that every square inch on my body was screaming with pain. My ears hurt, my jaw, my eyes..I just can't explain the agony I was in.

As I started to get off one medicine at a time, the overall pain started decreasing. With every drug I got out of my system, the pain became more localized; in the limbs that really were effected by my RSD like my hands not just the random all over stuff.

Why don't more doctors recognize this or let us try homeopathic remedies? They don't know about them; it is not taught to them in med school. I have interviewed many doctors on my radio show and they all tell me the same thing. They have an hour or two that just skims over chronic pain, if at all.

That's why it is up to everyone of us to do our own research. Talk to people; search the internet; join groups like this. We have to tell each other what we have discovered!!!!!

The other problem is many insurance company's won't cover any non-traditional treatments so then cost is an issue.

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