Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-06-2009, 02:40 PM #1
Breezy55 Breezy55 is offline
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Default Now What? I have Lost The Battle!

So here come's my sob story. I am in so much PAIN that I do not even know if I can take any more! I am on Temazepam,Topamax,Clonazepam,Furosemide,Zolpidem,L orazepam,Methadone,Morphine Sulfate IR 30mg,Morphine Sulfate CR 100mg. I went to see my DR. who is a regular Dr. who see's everything. So he said there is nothing more that I can give to you. Everything that I am taking is not even touching my pain! So he gave me a referral to see my neurologist (but I can't get in untill after Jan/18/2010! I got a referral to the pain clinic. (when they where sending in my paper's for that one that told me it takes up to 3 weeks just to hear from them! Also they said remember it is the holiday's! I need all of you'r prays just to hold on that long! This pain is such a monster! I hope the rest of you have a great holiday! All My Love Breezy!
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Old 12-06-2009, 03:39 PM #2
AintSoBad AintSoBad is offline
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Quote:
Originally Posted by Breezy55 View Post
So here come's my sob story. I am in so much PAIN that I do not even know if I can take any more! I am on Temazepam,Topamax,Clonazepam,Furosemide,Zolpidem,L orazepam,Methadone,Morphine Sulfate IR 30mg,Morphine Sulfate CR 100mg. I went to see my DR. who is a regular Dr. who see's everything. So he said there is nothing more that I can give to you. Everything that I am taking is not even touching my pain! So he gave me a referral to see my neurologist (but I can't get in untill after Jan/18/2010! I got a referral to the pain clinic. (when they where sending in my paper's for that one that told me it takes up to 3 weeks just to hear from them! Also they said remember it is the holiday's! I need all of you'r prays just to hold on that long! This pain is such a monster! I hope the rest of you have a great holiday! All My Love Breezy!


Breezy,
We ALL feel your pain.
We all know that there is nothing that can compare to the "type of pain" that RSD presents.

You must understand, that while I'm on a fair cocktail of meds (because I have lots more than rsd), but methadone is my painkiller.
There IS NO magic bullet! NOBODY, that posts here regularly, save a few miracles, get to walk away pain free. (I've yet to see that).
The most we can expect, is to help regulate the pain.
For all the meds I take, I still have useless, helpless days.
Would you stop taking your meds?
Go with them, until you see the specialist, there IS hope!


I agree, I think you need more of a specialist, because you seem to be getting the "shotgun" approach.
But, you must relax, and if you're inclined, pray.

You will be helped.

I'm sorry for you Breezy, you sound very depressed.
Have a little fun if you can.

I've had this bastard for 26 years, and, was undiagnosed for 7.
HELL.
I know it well.

My prayers will be with you!
Keep the Faith! And, have patience....

Help IS on the way!

pete
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Old 12-06-2009, 04:21 PM #3
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Default hang on !

And sometimes you hafta go beyond the 'take-a-day-at-a-time'......literally.,
Take an HOUR at a time....or a MINUTE at a time.....
Like i was sharing w/a friend in a private message, it really helps keep the depression at bay to do simple 'silly' things.....look on uTube at "laughing babies" or "funny puppies"..... it's hard NOT to laugh. And it does help the time go by.
Not taking your pain 'lightly'. BELIEVE me. I DO know pain.....besides all the meds, it IS a constant battle for sanity......always rubbing on topical crap.....
massaging.....hot baths......curling up in a ball and cry.....it SUCKS.

Saw your thread and my heart went out to you so thought i'd drop this note....
and YES ----> prayer DOES help..... It sure don't hurt anyway.

Keep hangin on......more options will eventually present themselves.

Caring

Rae
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Old 12-06-2009, 05:16 PM #4
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Hi Breezy!

We all understand you here and are sympathetic to your pain. Please, just know that you are strong and not weak. I learned a great trick for when the pain is uncontrollable. My P.T. taught me how to breathe. Its called "Chest Hollowing" and you simply lie on your back, inhale from your nose. First, fill up your belly with air, then your lungs, then try to fill up to your collarbones. It's tricky at first, but once I got the hang of it I really got alot of relief. You can hold it for a few seconds, then exhale through your mouth. It's wonderful to focus on breathing, as it calms you down and makes you concentrate on something other than the pain.

You are in my thoughts. I hope things get better for you really soon.

Kim
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Old 12-06-2009, 09:30 PM #5
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[QUOTE=Breezy55;597095]So here come's my sob story. I am in so much PAIN that I do not even know if I can take any more! I am on Temazepam,Topamax,Clonazepam,Furosemide,Zolpidem,L orazepam,Methadone,Morphine Sulfate IR 30mg,Morphine Sulfate CR 100mg. I went to see my DR. who is a regular Dr. who see's everything. So he said there is nothing more that I can give to you. Everything that I am taking is not even touching my pain! [QUOTE]

Dear Breezy,

I'm really sorry that you are having such a hard time. The transition to cold, wet weather is awful.

I saw Dr. Getson last week. He is an extremely well known doctor specializing in RSD. When he saw that I was taking Methadone AND and opiate/morphine med for my pain, he said that it was counter-intuitive. You are apparently supposed to take either one or the other, but not both together. So he suggested that I drop the methadone from my line-up of meds. In his opinion, the two products work against each other for pain and you end up with less pain control you would otherwise.

IMHO, my pain has increased since eliminating methadone. But our weather also just turned a lot colder.

I just thought I would pass on what he told me, since you have both meds in your line-up like I did.

Another suggestion - if you are able, try to get outside and walk in the fresh air as much as you can. Bundle up, and find a friend (or grab a pet), and walk. I love it and it takes my mind off my pain for a while. For me its been the very best therapy since I got sick over 3 years ago.

Pleease take care, XOXOX Sandy
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Old 12-07-2009, 08:48 AM #6
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Breezy,

Like Kim mentioned, there are some drug combinations that just don't work well. It isn't always a matter of bad interactions, where the combination will cause problems. That's the type of thing the pharmacists check when filling a script. But knowing when a combination will reduce effectiveness is much more complex. That's one of the reasons I see a pain management clinic. I could easily get my GP to write me a script for a pain killer, but the Pain Management people have more experience with all of the different cocktails.

It's frustrating to have to wait to see a specialist, I know. Hang in there, though.

Kim was suggesting some simple meditation. That can really help in getting past some of the hard times.

I hope you get some relief soon.


Mike
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Old 12-07-2009, 09:26 AM #7
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Hi Mike and Breezy --

I've been with a Pain Mgmt Clinic in Boston for a year with a practictioner that I was under the impression was an excellent pain management doc. I have placed a lot of faith in him and trusted him, I thought he was good. So I have to admit that I am profoundly disappointed to just find out now about the Methadone not going with the opiates and morphine that I have been prescribed. How could it be that this is just now being disclosed to me? Plus, my head hurts much, much worse the last few days. I'm more than a little bit of a mess at the moment. In short - I am so confused. In desperation I might take some Methadone in a little while just to see if it will help me.

I like Kim' suggestion of the breathing a lot. Thanks Kim. I also like the meditation tapes that are available at the UCLA and UMASS websites:

http://marc.ucla.edu/body.cfm?id=22&oTopld=22
http://www.umassmed.edu/Content.aspx...d&itemid=41254

Take care everybody. XOXOX Sandy
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Old 12-07-2009, 03:46 PM #8
Breezy55 Breezy55 is offline
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I just wanted to take the time to thank all of you for you'r input on my current situation! It really means alot to me. I am not usually a downbeat person. However for some reason this pain has really done a number on me! It does help to know that all of you are out there to comfort me in you'r own way's! I guess sometimes what makes it so hard is that I live alone. With this RSD pain and with winter here it is getting so hard to do anything by my self! Even where I live in my apartment I have to walk up 20 strair's untill I get to my living space. You should see me when it's about -20 and I have about 10 bags of food to unload! Huff,Huff,Puff,Puff!! I hope that all of you have a Great Christmas! Pain or no pain at least we are still here! Always Breezy
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Old 12-07-2009, 10:47 PM #9
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try to relax stress is not good for this dragon , it will feed on it i have had this dragon for 31 years i now what you are going through but find something that will give you peace and try to relax do what you can do, try not to over load your system (yourself) god bless hang in there you are in my prayers
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Old 12-10-2009, 04:06 PM #10
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Dear Breezy 55,
First of all you need to move to a lower apt. I lived on the third floor apt when this first happened 5 years ago and I had 21 step up and down on one foot with crutches. It was a mess. I went from a two bedroom on third floor to a one bedroom on the ground floor. I slept in the living room in my bed and my son slept in the bedroom. I could not handle the steps any longer. See if you can get a lower apt. It is too much to walk those steps.

I am sooooo sorry to hear you are in sooooo much pain. I hear ya and just like most all of us have been there too. I know it got bitterly cold in the North (I live in PA). You have to do something to take your mind off this monster or it will eat you up alive. You sound just like me in the first year of this mess. I was taking so much the hospital even overdosed me and sent me home like that...I still don't remember 4 days at all. In the last year or so I found that I pray alot more and breathe like someone already suggested and visualize me walking along a warm beach to try and lower my pain. I know it is not the magic wand but it does help when all else fails. I have to read for a few hours before bedtime in the evening until about 1 am or else I get so depressed all I do is cry. You must keep your mind on other things or you will indeed lose it. I will keep you in my prayers and hang in there. Do what you can to keep yourself going and at least once a day try and laugh at whatever you want to. It lowers your pain a bit. Turn on a silly movie or TV show and let the laughter go.
I am alone too so I can understand how you feel and my family doesn't get it either so I do the best I can with what I have. I have a dog and cat and without them I would be in the funny farm.
Take care,
kathy d
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