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 03-14-2014, 10:10 AM #21
Hana Hana is offline
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Quote:
Originally Posted by painman2009 View Post
I am taking ocycodone(percicept) morphine, fleiril, trazadone, vimovo, cymbalta.. nothing works well enough though where I can just take it and be on my way..
Right painman. I took that much and couldn't be on my way,anyway... for being in your thread..

Hi all... sorry I haven't been able to sit long enough to respond, and like many of you, I have 2 fingers working,that fumble a lot...
Gerry, My goodness, you've just been through hell!! I don't blame you for not wanting to go back for another procedure. It would be hard for me or any of us to be in a good place, either. We all have a limit for how much we can take and we all need time to breathe, as RRae said to me very recently. Maybe it's okay to know your limits and not have it until you're ready? I I know your husband provides comfort, but does your doctor know how you are managing? Friends? I'm concerned for you and your health. Support is so key to healing, and whether you have the procedure are not, we want you to heal and be out of pain.

I hope to answer some... questions... first, I've taken or tried most narcotics, antiseizure meds.. antidepressants, antispasmodics... and on and on. I could send a list.
I do use fentanyl instead of Oxy for many reasons, especially that it lasts longer,is less psychoactive and doesn't cause as much constipation. Acetomenophen toxicity has already happened! 4g= PTSD! And Neurochic, gastroparesis is not the same as constipation. I had illeus for 8 days last year not do to lack of proper maintenance.. Nope, my gut doesn't respond well to colon blows, even though I occasionally need them. ...at least most you mention. For us with GI issues, it may be more complicated. I am seeing that I probably do have the autoimmune stuff going on now as well... another puzzle.


Anywhoo, prayers for healing your way,

Hana
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Old 03-14-2014, 12:16 PM #22
Hana Hana is offline
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PAINMAN:"how about using some time to properly map the pain signals.. and monitor your natural chemicals to see what changes during a flare.. I will never give up on a cure, I will continuously look for remission, I will fight for a better life until my last breath .. who ever told you that accepting defeat is the better way should be looked at .. it sounds like government propaganda.. there is no person animal or plant that deserve less than a full life.. FULL meaning whole body,mind,and quality of life....I assure you that is what we all agree on here other wise we would not pull together on sites like this....god bless all ,, here is hoping for a pain free day, and the hope of cure
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I agree with you painman. We are fighters here.. looking for relief, finding that doctors don't have all the answers we may seek. The best we can do is to honor our bodies and acknowledge the beast... ever seeking cure, and life beyond our painful experience. When I realized that taking care of this body is a privilege and not a burden, my depression began to subside...not that I like it!! NO. I love me, NOT the beasts. I was given this body for a reason, had my experiences for a reason, and so I am trying not judge that or to fight me. It only feeds CRPS.. Weneed gentle defusing and calmness. My SNS needs the PNS to kick in a bit more.. I do adaptive yoga, meditation, massage when I can afford it, accupuncture and have cranio-sacral help from a DO covreed by insursance, All medical stuff- the bright lights, attitude by doctors, insurance woes and treatments take energy and can be depleting. It activates my CRPS if I'm not careful- if I don't take time to notice how I am doing.
A few days ago RRae had to remind me to BREATHE!! Bless you RRae for that!! I am taking a week off from my appointments and wont see the surgeon again for 3. Only we know what we are able to tolerate for treatment and it's a very personal decision. Hats offto ALL for the really tough choices we have to make. IMHO there is not a "wrong one" if it is for the betterment of your life.

Holy moly, my body needs a rest now!

Prayers for all of us to be painfree in this lifetime. Many many.
Hana
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Old 03-15-2014, 08:42 AM #23
painman2009 painman2009 is offline
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Quote:
Originally Posted by Hana View Post
PAINMAN:"how about using some time to properly map the pain signals.. and monitor your natural chemicals to see what changes during a flare.. I will never give up on a cure, I will continuously look for remission, I will fight for a better life until my last breath .. who ever told you that accepting defeat is the better way should be looked at .. it sounds like government propaganda.. there is no person animal or plant that deserve less than a full life.. FULL meaning whole body,mind,and quality of life....I assure you that is what we all agree on here other wise we would not pull together on sites like this....god bless all ,, here is hoping for a pain free day, and the hope of cure
__________________"

I agree with you painman. We are fighters here.. looking for relief, finding that doctors don't have all the answers we may seek. The best we can do is to honor our bodies and acknowledge the beast... ever seeking cure, and life beyond our painful experience. When I realized that taking care of this body is a privilege and not a burden, my depression began to subside...not that I like it!! NO. I love me, NOT the beasts. I was given this body for a reason, had my experiences for a reason, and so I am trying not judge that or to fight me. It only feeds CRPS.. Weneed gentle defusing and calmness. My SNS needs the PNS to kick in a bit more.. I do adaptive yoga, meditation, massage when I can afford it, accupuncture and have cranio-sacral help from a DO covreed by insursance, All medical stuff- the bright lights, attitude by doctors, insurance woes and treatments take energy and can be depleting. It activates my CRPS if I'm not careful- if I don't take time to notice how I am doing.
A few days ago RRae had to remind me to BREATHE!! Bless you RRae for that!! I am taking a week off from my appointments and wont see the surgeon again for 3. Only we know what we are able to tolerate for treatment and it's a very personal decision. Hats offto ALL for the really tough choices we have to make. IMHO there is not a "wrong one" if it is for the betterment of your life.

Holy moly, my body needs a rest now!

Prayers for all of us to be painfree in this lifetime. Many many.
Hana
Hana: take time to get wind back in you.... I agree that things happen for a reason and sometimes we do not understand it.. Amen to that.. and to address each other is what this site is about.. its not highway robbery( ). I absolutely agree.. don't do procedures in the Dr,s or Insurance companies time frame.. only when you are ready.. physically and mentally.. my PM is trying to push that damne SCS on me.. .. ... Ger good luck in your decisions.. and be well
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Old 03-16-2014, 07:16 AM #24
Neurochic Neurochic is offline
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Hana

I made the comments about constipation because you'd mentioned it in your post where you said "...I got gastroparesis/IBS constipation that wouldn't abate until I'd literally gone through withdrawal".

I am very aware that gastroparesis and constipation are entirely different but from what you wrote I'd assumed that you did have constipation which abated once you'd gone through withdrawal. If I have incorrectly understood then apologies. Hopefully my post will still be helpful to others even if it doesn't apply to your situation.
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Old 03-16-2014, 10:07 PM #25
RSD ME RSD ME is offline
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I had an MRI a few years ago on my stomach to locate cysts and endometriosis and had no problems. I just had another MRI a few weeks ago on my hips and spine and that same night I had unbearable pain in my hips. It felt like stabbing pain deep in my bones. It was horrible. I don't know why this happened but will ask my pm dr when I see him next week. Not sure if anyone will know but it can't hurt to ask. I think it's related to rsd. I don't know why, but I just do. I have osteopenia and osteoarthritis in my hips that are causing me alot of stiffness and external pain , but the pain I had in my hips after the MRI was different. It was that deep aching pain. It only lasted one night but I'll never forget it. It was really scary.
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