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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)

Best pain drugs you haved used to control/help CRPS?

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Unread 11-27-2010, 01:42 AM   #1
DONTTOUCHIT
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Poll Best pain drugs you haved used to control/help CRPS?

Hi Just wonderind what others have found halpful as far as pain meds ?

I have used Fenatanly patches , They helped but always fell off.

Oxycontin 20-40-80 Mgs anywhere from 3xs a day to 3 times a day, Currently on 40 mgs a day the 80 where way to strong for me .

Oxycodone HCL IR 5 Mg up to 8 times a day , These seem to work for the most part but seem like im getting used to them and may need to up the dose/.

Percocett didnt help at all

Morphine all different doses , These seemed to help the least of any meds.

Also on Lyrica ,Cymbalta,clonzapin,Gabe something, Was on Neurotin also


Im just cururious if there is something lese out there I may suggest to Doc or is even suggesting something different to a Doc a no no , I have a pretty good relationship with my Doc, i consider her a friend if that makes sense but dont want to seem like Im lookjing for better stronger drugs.

Any suggestions would help out a great deal , I have read Dilaudid(sp) works pretty good
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Unread 11-27-2010, 12:30 PM   #2
SandyRI
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How about treatments? Have you tried PT? Or blocks? Or lidocaine infusions? Ketamine? Many of us have benefited a lot from treatments combined with meds.

I have also read about some people having a lot of success with Methadone with their RSD. But it doesn't go with morphine (which is Fentanyl). So you need to take one or the other.

Advil or Motrin can also be surprisingly effective. Also Fiorcet - I take that for my headaches.

I don't take Lyrica or Neurontin - I use Topamax because I suffer from migraines.

Hope this helps. Good luck to you. Sandy

Quote:
Originally Posted by DONTTOUCHIT View Post
Hi Just wonderind what others have found halpful as far as pain meds ?

I have used Fenatanly patches , They helped but always fell off.

Oxycontin 20-40-80 Mgs anywhere from 3xs a day to 3 times a day, Currently on 40 mgs a day the 80 where way to strong for me .

Oxycodone HCL IR 5 Mg up to 8 times a day , These seem to work for the most part but seem like im getting used to them and may need to up the dose/.

Percocett didnt help at all

Morphine all different doses , These seemed to help the least of any meds.

Also on Lyrica ,Cymbalta,clonzapin,Gabe something, Was on Neurotin also


Im just cururious if there is something lese out there I may suggest to Doc or is even suggesting something different to a Doc a no no , I have a pretty good relationship with my Doc, i consider her a friend if that makes sense but dont want to seem like Im lookjing for better stronger drugs.

Any suggestions would help out a great deal , I have read Dilaudid(sp) works pretty good
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AintSoBad (11-29-2010)
Unread 11-29-2010, 06:29 PM   #3
AintSoBad
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Sandy, I wanted to mention this to you, as I recall how you suffer with headaches/pain.
I used to be on Fiorinal too, for many years, even before I got RSD / TOS.
Only prn at that time.

Then, my doctor and I realized that the Fiorinal has caffeine in it. And,, I was getting constant 'rebound' headaches. My doctor did a search in the PDR, and found another med, that was the same make up as Fiorinal, but without the caffeine! It worked much better, but, I'm sorry I cannot remember the name of it.
If it comes to me, I'll PM you.


Also, to 'Don'tTouchIt', methadone has been a mainstay for the 'burning' pain of rsd, for about 20 years now.

Hope this might help, be well!

Pete
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Unread 11-30-2010, 09:51 AM   #4
lorigood243
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Hi Sandy

I have a question for you.

In regards to the Ketermine infusions...after you have them do you go off your regular pain meds? I use a fentanyl patch and small doses of Methadone
letme know what happens when you get the infusion. i still havent decided about getting them done. My hubby is against them, and the reviews are mixed. My primary care says i should go and hear out the doctor who would administer it. im just not sure.
any hoo...do you go off your regular pain meds when you get infused?
Thank you
Lori




QUOTE=SandyRI;720184]How about treatments? Have you tried PT? Or blocks? Or lidocaine infusions? Ketamine? Many of us have benefited a lot from treatments combined with meds.

I have also read about some people having a lot of success with Methadone with their RSD. But it doesn't go with morphine (which is Fentanyl). So you need to take one or the other.

Advil or Motrin can also be surprisingly effective. Also Fiorcet - I take that for my headaches.

I don't take Lyrica or Neurontin - I use Topamax because I suffer from migraines.

Hope this helps. Good luck to you. Sandy[/quote]
__________________
Wishing you a day of pain free movement that turns into forever!
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Unread 11-30-2010, 12:12 PM   #5
SandyRI
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Lori,

I started ketamine infusions with Dr. Philip Getson in Marlton, NJ in April of this year. I did the 10 day outpatient protocol, followed by 2 days a week for a month, then tapered to 2 days every other week for a while, then once every 3 weeks or so. I returned to my FT job in June. I am now with a doctor in RI and will be going to a 2 day schedule every 4 weeks, which we hope will evolve to 2 days every 6 weeks if I can stick it out. So far I have had 28 infusions.

I wanted to go off the morphine (Fentanyl). So I did. No doctor told me that I had to. I also felt well enough from the ketamine that I could.

Ketamine gave me my life back. The protocol is just as important as the treatment, though - I think that beginning with a multiple day protocol helped me quite a bit. There is a lot of info about ketamine on the RSDSA.org website.

Let me know if you have any other questions. The best of luck to you. XOXOX Sandy


[quote=lorigood243;720972]Hi Sandy

I have a question for you.

In regards to the Ketermine infusions...after you have them do you go off your regular pain meds? I use a fentanyl patch and small doses of Methadone
letme know what happens when you get the infusion. i still havent decided about getting them done. My hubby is against them, and the reviews are mixed. My primary care says i should go and hear out the doctor who would administer it. im just not sure.
any hoo...do you go off your regular pain meds when you get infused?
Thank you
Lori
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gramE (11-30-2010)
Unread 11-30-2010, 01:10 PM   #6
Jimking
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I'll throw in my 2. My take on ketamine is this...the earlier you have it the better results can be achieved but not for everyone but for many more who waited too long. If one gets relief from the infusions, yes, cut down the meds if not, well, the pain would still need to be controlled. There are also different ketamine infusions----single injections, 4,5,10 day infusions lasting different amount of hours each day and apparently different methods of combinations of ketamine and other drugs. And the Coma infusions done in Germany and Mexico.
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Unread 11-30-2010, 01:29 PM   #7
ginnie
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I took two ketamine infusions. This helped me alot before I had surgery. I did not go down on my medication while I received it. I had no side effects at all, and it did help the pain. The proceedure itself did not hurt. ginnie
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Unread 11-30-2010, 07:43 PM   #8
SandyRI
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Thanks Pete - I've had an awful time with the rebound headaches at times with the Fiorcet. It does work for my headaches at first, but the "rebound" effect hits fairly often. Ugh....

I have a triptan for really bad migraines, and use Toradol injections for when I need to take a break from the Fiorcet. Motrin helps. And I still have Oxycodone and use that, too, but only at night when I'm not working.

In spite of the ketamine, head pain remains a constant battle for me. It's definitely where the worst of my RSD decided to settle. Bummer.

Thanks so much for your reply. XOXOX Sandy


Quote:
Originally Posted by AintSoBad View Post
Sandy, I wanted to mention this to you, as I recall how you suffer with headaches/pain.
I used to be on Fiorinal too, for many years, even before I got RSD / TOS.
Only prn at that time.

Then, my doctor and I realized that the Fiorinal has caffeine in it. And,, I was getting constant 'rebound' headaches. My doctor did a search in the PDR, and found another med, that was the same make up as Fiorinal, but without the caffeine! It worked much better, but, I'm sorry I cannot remember the name of it.
If it comes to me, I'll PM you.


Also, to 'Don'tTouchIt', methadone has been a mainstay for the 'burning' pain of rsd, for about 20 years now.

Hope this might help, be well!

Pete
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Unread 11-30-2010, 10:12 PM   #9
loretta
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Quote:
Originally Posted by DONTTOUCHIT View Post
Hi Just wonderind what others have found halpful as far as pain meds ?

I have used Fenatanly patches , They helped but always fell off.

Oxycontin 20-40-80 Mgs anywhere from 3xs a day to 3 times a day, Currently on 40 mgs a day the 80 where way to strong for me .

Oxycodone HCL IR 5 Mg up to 8 times a day , These seem to work for the most part but seem like im getting used to them and may need to up the dose/.

Percocett didnt help at all

Morphine all different doses , These seemed to help the least of any meds.

Also on Lyrica ,Cymbalta,clonzapin,Gabe something, Was on Neurotin also


Im just cururious if there is something lese out there I may suggest to Doc or is even suggesting something different to a Doc a no no , I have a pretty good relationship with my Doc, i consider her a friend if that makes sense but dont want to seem like Im lookjing for better stronger drugs.

Any suggestions would help out a great deal , I have read Dilaudid(sp) works pretty good
I've had RSD 15 years-now full body or generalized and also internal. I used to take 3200 mg of neurotin, changed to lyrica, and gradually went off both without getting electric jolts, jerks, spasms back for the most part.
RSD is an autonomic condition, affecting blood pressure, so I take 2 different blood pressure meds. vicodin for pain, lorazepam for anti-anxiety med, which helps a lot to keep me calm , Cymbalta, Seroquel for sleep. I dailey exercise, stretch. Swimming has been the best for keeping mobility. Only one hand is crippled-diagnosis too late. Went thru a lot of physical therapy and massage therapy. Tried accupuncture, but couldn't handle it. Physcial therapy gave me my range of motion for both sides of frozen shoulder along with massage therapy. Massage therapy helps our circulation. Also in the process of my Dr. making up a compounding cream for topical use for skin issues-ketamine, lidocaine antibiocs---Also, one of the biggest helps has been ongoing psych. appointments monthly. In my 6th year with this Dr. who also is a neurologist, internist, pharmacologist and trained in HBOT. I also had extensive grief therapy when my parents died, which has helped me cope with the many losses that come with RSD. Hope this helps-rsdrx.com puzzle list is a good source of info. Also local support groups can be very helpful. One of your new friends, loretta
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gramE (11-30-2010)
Unread 01-08-2011, 10:15 PM   #10
WolfLarsen
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My RSD seems to be more moderate than most, but here's what I use:
Lyrica 600mg a day
amitriptyline 50 mg day - very cheap but my doc says its one of the most effective medications. Unfortunately I can't tell you which is better since I started taking them both around the same time but together they both improved things dramatically. Also a 5-day tapered dose of prednisone was helpful, especially at decreasing edema and increasing flexibility, although long term use is supposed to be risky.
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