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 07-23-2008, 05:21 AM #11
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Detox going very badly......RLS is killing me. REQUIP, NEURONTIN, VALIUM, FLEXERIL, NOTHING IS HELPING. I WILL BE USING OXYCODONE TOMORROW. I AM SO ANGRY WITH THESE WORTHLESS DOCTORS I CAN'T STAND IT.

I WILL BE TALKING TO THE STATE OF CALIFORNIA TOMORROW. I WANT TO KNOW WHAT THE DOCTORS ARE SUPPOSED TO DO. IF THEY ARE NOT DOING IT, LET THEM EXPLAIN IT TO THE GOVERNMENT. I HAVE HAD CRAPPY DOCTORS BEFORE, BUT THESE DOCTORS ARE RATED THE BEST IN OUR AREA IN SACRAMENTO MAGAZINE. IF THEY ARE THE BEST, I WOULD HATE TO SEE THE WORST. I REQUESTED AN EMERGENCY APPT AT 3AM TODAY. I CAN'T GO ON LIKE THIS. RLS IS HORRIBLE. OXYCODONE WILL STOP IT, OR IT USED TO.

I FEEL LIKE I HAVE UNLEASHED A HUGE MONSTER THAT NO ONE KNOWS HOW TO TREAT. A PERSON HAS TO HAVE SOME SLEEP AND I AM ON MY SECOND NIGHT WITH LITTLE OR NO SLEEP. AND YES, ALL CAPS MEANS I AM SCREAMING THIS TO THE WORLD.

AT LEAST WITH DEMENTIA OR ALZHEIMER'S I MIGHT NOT FEEL THIS RLS. I HAVE THE SEVERE VARIETY BASED ON MEDS NEEDED TO STOP IT.
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Old 07-23-2008, 06:09 AM #12
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(((dllfo)))
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Old 07-23-2008, 08:18 PM #13
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Wed at 5:45pm

I made a decision last night to take Oxycodone. I have kicked Morphine, bu the severe RLS
has been very difficult. I fought and fought until the RLS won. It really is a monster.
Relentless. VERY surprising to have it this severe.

My Pain Med dr. and neurologist have no returned my calls. I even told the neurologist I needed an emergency appointment due to detoxing. It is very tempting to file a complaint against them with the State of California for not even calling back. My only doctor who seems to give a sh-- is my primary care physician.

I certainly never counted on my other doctors disappearing.
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Old 07-24-2008, 11:13 PM #14
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Talking Opiate withdrawl

Hi,
Well this is my first posting and I have to say I am Sooooo glad I have a support group to "talk" with. As you all know, if people aren`t where we are they have have NO idea! As far as opiate withdrawl, my RSD started with a tendon tear in my arm. I was going to see a neurologist. (Dr. number two.) He didn`t know what to do for me after tests and trying all kinds of medications, (he knew NOTHING about RSD) so I was given to his new partner. So my third Dr. who was supposed to be a neurologist and specialized in pain management (he also new nothing about RSD but lied and said he did) decided I should have another MRI to see if the tendon tear had healed because he didn`t think my symptoms or pain was really RSD. So I should have the MRI and then go to see an orthopedic Dr. he recommended. He told me to STOP taking my pain medications including the 20mg of oxycontin 3 times a day. Well, a few days later I started getting sick and I thought I was getting a cold, flu something. I was so achey, chills, sweating! Yikes it was horrible! I had no idea what was going on! I felt so bad I never felt so sick in my life. I went through three days of HELL! I couldn`t even get off of the couch. Finally my son asked me if I wanted to go to the hospital and I was so desperate I said yes. Well, it was then I found out I was going through withdrawl. They helped me at the hospital with an IV and said go home, start the Oxycontin again and follow up with my Dr. When I went back (I had a few words for him!) for my scheduled appointment, I wasn`t on the books! They couldn`t find my file either! Funny wasn`t it? I told them I wanted my medical records immediately and ended up at a pain management center where I am now. Bottom line on withdrawl. I found it to be HELL. There has to be a way to where the dosage can be gradually cut down so the body can eventually live without it. I sure hope so! I will be hoping to read others experiences and good luck to you.
Sorry to be so long! I tend to babble! I think it`s the medications! LOL!
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Old 07-26-2008, 02:13 PM #15
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Quote:
Originally Posted by CZZ74 View Post
[
Diana just wanted to say it is so nice to hear hbot is still relieving your pain. I have been trying to get in to a chamber for two months- its not easy. But I am so excited at the possibility of getting off all this medicine and being able to drive again and have a life. thank you .

Good luck and prayers for you coming off your meds I hope it is not to awful and experience for you. Are you changing meds? I tried to go off mine but the pain underneath was just too unbearable. I hope you are more successful.. CZ


QUOTE=DianaA;325034]I was diagnosed with RSD in 1989, full body. I was on Fentanyl duragesic patches 100mg, plus ms contin(morphine)100mgX 3 daily plus dilaudid (morphine) for break through pain. My symptoms of withdrawal were, flu like, pains and aches, burning skin, tremors, sleeplessness, diarrhea, anxiety, agitation, confusion and some symptoms lasted for 8 weeks. Yours may not be anything like mine, given the amounts and time of use. I was given Clonidine for withdrawal. There is also a drug called Suboxone that can help with Opiate withdrawal, although the doc must be certified to administer. Suboxone is also beginning to be used for the treatment of pain, but this is relatively a new use for this drug. My drug of choice is oxygen. HBOT has helped me, more than anything else. I wish for you the best on this endeavor. Plan for this down time, videos, reading, music, walking seemed to help me, baths, anything that will make you more comfortable.
If you have any questions or need support I will be there for you. Lots of love and prayers, diana
[/QUOTE]
CZZ74...Do everything that you can to get into HBO2 Therapy! If it is difficult the first time, try again! Have them lower the atmospheric pressure, but give it a fair try. Keep in touch and let me know if you are able to get HBOT. I'll be praying for you. I truely wish I could bring everyone home with me for HBOT. I know how brutal RSD is. But, I am not a physcian. If you get the chance RUN don't walk to HBOT!!!! love diana
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Old 07-26-2008, 02:22 PM #16
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Originally Posted by Franny View Post
Hi,
Well this is my first posting and I have to say I am Sooooo glad I have a support group to "talk" with. As you all know, if people aren`t where we are they have have NO idea! As far as opiate withdrawl, my RSD started with a tendon tear in my arm. I was going to see a neurologist. (Dr. number two.) He didn`t know what to do for me after tests and trying all kinds of medications, (he knew NOTHING about RSD) so I was given to his new partner. So my third Dr. who was supposed to be a neurologist and specialized in pain management (he also new nothing about RSD but lied and said he did) decided I should have another MRI to see if the tendon tear had healed because he didn`t think my symptoms or pain was really RSD. So I should have the MRI and then go to see an orthopedic Dr. he recommended. He told me to STOP taking my pain medications including the 20mg of oxycontin 3 times a day. Well, a few days later I started getting sick and I thought I was getting a cold, flu something. I was so achey, chills, sweating! Yikes it was horrible! I had no idea what was going on! I felt so bad I never felt so sick in my life. I went through three days of HELL! I couldn`t even get off of the couch. Finally my son asked me if I wanted to go to the hospital and I was so desperate I said yes. Well, it was then I found out I was going through withdrawl. They helped me at the hospital with an IV and said go home, start the Oxycontin again and follow up with my Dr. When I went back (I had a few words for him!) for my scheduled appointment, I wasn`t on the books! They couldn`t find my file either! Funny wasn`t it? I told them I wanted my medical records immediately and ended up at a pain management center where I am now. Bottom line on withdrawl. I found it to be HELL. There has to be a way to where the dosage can be gradually cut down so the body can eventually live without it. I sure hope so! I will be hoping to read others experiences and good luck to you.
Sorry to be so long! I tend to babble! I think it`s the medications! LOL!
Frannie,
Sorry to hear that you too have to go through this hell. Ask your Doctor about Suboxone. It is for withdrawals from opioids. Just recently being use also for pain relief(experimental). It is worth a try. Let us know how you are fairing. Then try HBOT for RSD if possible. love Diana
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Old 01-01-2009, 09:40 PM #17
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I coordinated with my Pain Med Dr. to get off Avinza (morphine) today. He prescribed Librium and Hytrin. I need to get off it due to other medical problems that have become life threatening.

Any experience out there? (watching CSI Miami does not count

I know my reactions to withdrawals because I forgot to take my Avinza 3 times. Like the flu. A really, really bad case. I hit WD at about 30 - 34 hours.

I took Librium in 1970, but don't remember any problems. Hytrin? Dunno.

Dr. said to take my last Avinza capsule at 8am Monday, then take the Librium and Hytrin 24 hours later and 8 hours thereafter.

I read that withdrawal symptoms only last a few days to a week. After reading about Librium I was thinking I might prefer to just get it over with. Take Valium or something.

Suggestions appreciated....thanks... (Oh, I haven't set a date to do it yet, no hurry, once I am ready, I planned on taking my last pill Sunday morning, then I have 5 working days to be sick or get different meds or talk to the doctor again, etc.)
I went off it two weeks ago. I have been sick most of that time. Pretty bad. I did it myself..cold turkey. Avinza made me so drugged/sleepy couldn't keep my eyes open at times. Been a ROUGH dang ride, but am finally about over it. only was taking 30 mg a day also. I am pretty sensitive to these kinds of drugs. Back on endocet/oxycodone about 15 or 20 mg a day... pill form...so I have to juggle the stuff all the time. I really liked the Avinza for convieneince and it made the foot almost pain free, but couldn't stand being so doped up. Was on it for 6 weeks or a little more.

Sherrie
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Old 01-01-2009, 11:10 PM #18
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Default Follow up on the HBOT...

CZZ74...Do everything that you can to get into HBO2 Therapy! If it is difficult the first time, try again! Have them lower the atmospheric pressure, but give it a fair try. Keep in touch and let me know if you are able to get HBOT. I'll be praying for you. I truely wish I could bring everyone home with me for HBOT. I know how brutal RSD is. But, I am not a physcian. If you get the chance RUN don't walk to HBOT!!!! love diana[/QUOTE]

At what pressure do they dive you to? Do the portable chambers that go to 1.4 ATA's adequate? Just wondering about the details of your experience.
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Old 01-02-2009, 12:28 AM #19
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My first dives were in Canada at a very safe 1.5ata. I did 40dives. My second and third set of 40 dives were both at 2.4ata. My current home chamber will go way beyond what is necessary,it came from a burn unit in a hospital. I ususally dive at 2.4ata. I generally start my dives at 1.8ata because I have been diving for a while now. Some clinics recommend 1.5ata others 2.4ata. An atmosphere is 33ft, at sea level you have an atmosphere and to get to 1.5ata you add 16.5ft. I believe you can certainly gain benefit from any oxygen under pressure. I would like to give you more detail. I'll pm my number if you have further questions. Di
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Old 01-02-2009, 01:38 PM #20
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Quote:
Originally Posted by DianaA View Post
My first dives were in Canada at a very safe 1.5ata. I did 40dives. My second and third set of 40 dives were both at 2.4ata. My current home chamber will go way beyond what is necessary,it came from a burn unit in a hospital. I ususally dive at 2.4ata. I generally start my dives at 1.8ata because I have been diving for a while now. Some clinics recommend 1.5ata others 2.4ata. An atmosphere is 33ft, at sea level you have an atmosphere and to get to 1.5ata you add 16.5ft. I believe you can certainly gain benefit from any oxygen under pressure. I would like to give you more detail. I'll pm my number if you have further questions. Di
DianaA-

I'd love more info. I am curious about getting a private chamber which goes beyond the 1.5ATA which, from the sites I have browsed, seems to be on the low-side for RSD use. It appears that most of the affordable home chambers are the soft-sided and I am amazed you got one from a burn unit. Any legal problems you've encountered? Are you in the US? PM me - I'd love to talk with you sometime Thanks!
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