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

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

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

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]

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

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.

meds
 

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

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

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

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.

Nothing seems very effective as an analgesic for me. Tramadol will help take the edge off a little which is great but this is about it. I have to stop the pain from starting in the first place which means avoiding the triggers. It means getting as much sleep and exercise as possible but not overdoing it. Gabapentin is fairly effective at stopping the pain before it starts but won't help once it does.

This is the "cocktail" that has finally gave me some of my life back....
Norco,Xanax,Elavil,Celexa,Baclofen, and Topol for high blood pressure from the pain. Every RSD patient is different and they require different types of meds to help them.

Hi DONTTOUCHIT,

I apologize I answered the wrong question. The best medication that worked for me was oxycondin but I only took it for a short period because my PM Doctor would not percrip. it. I switched from 1 doctor to another and the new one would just not percrip. it. His exact quote to me on our first appt. was "If you are going to be a patient of mine I won't write for oxycontin". He thought it was a great medication but dangerous, and I wonder how he new this back in 2004, and also felt it would not stay on the market so why bother. And here we are some 6 yrs. later with formula changes, patients suffering and going through withdrawel because of a medication that was made to help. I believe Purdue who is the manufacturer is here is trying to make it safer for people to take. We have all heard all of the abuse stories.

To whoever asked about coming off of medication prior to a ketamine infusion: Sorry it's early this morning, only had 1//2 cup of coffed...

I have had 3 - 5 day inpatient ketamine infusions with boosters from 2004 - 2009, Jan 2009 was my last booster. I never went off any of my regular medications at the time and was never even discussed. But that was a couple of years ago. I have heard from more than one person that the doctors are requiring that your off narcotic medication especially when it comes to the Fentenyal Patch. And this is not just for ketamine infusions this is for many types of surgery,especially orthro type procedures. Why this is happening I believe is a 2 sided story, 1-they don't want to be responsible for the pateint if a serious problem occurs because of a patient being over medicated and 2-doctors don't want to write percriptions for narcotic medication anymore. So I would discuss with your doctor in detail what his protocol is.

Gabbycakes

So far, nothing has really made a great difference to my pain.

I've tried (not in this order) methadone, duragesic patches, tramadol, tylenol 3, vicoden, percocet in the "pain med" category.

Also, neurotin, lyrica, savella, amitryptilene (sp?) cymbalta, namenda.

These meds help a **little bit** and I have been on this combination for quite a while .... Topiramate (topamax), Baclofen, voltaren gel, RSD cream with ketamine, Lidoderm patches. Also the blood pressure med Norvasc has helped with the redness and coldness. hydrachlorathiazide helps with the swelling some.

Prescription strength Naproxin (Aleve) helps my over all body pain from long standing fibromyalgia and myofacial pain - but I can't take it any more due to bleeding in my stool. Switched to the voltaren gel. It doesn't work as well, but at least it is not dangerous to my intestinal tract.

I've had Fibro and myofacial pain since I was 17 - I am 52 now. In March 2011 I will have had RSD 10 years. In addition, I was diagnosed with Central Pain syndrome last year. So - my amount of pain may be more than some people. The RSD affects about 3/4 of my body now.

I am now on disability and not having to work has greatly decreased the stress on my body.

RSD jumping
 

Evening all,
Haven’t been on for some time and thought I would drop by with a new question. :grouphug:
(1) As far as what I have used for the past 7 yrs. With this demon named RSD/CRPS..I think I have used almost everything, with little help most of the time! Best for me really is my TENS unit. There is not pain pill that takes the pain away for me. And now much to my dismay, it seems, if it’s possible the RSD has jumped from my LEFT FOOT to my RIGHT FOOT and both HANDS and WRISTS! Just stared about 2 months ago.
(2) My question is. Can RSD jump like that? Right now I live in Metro Detroit Michigan and was going to the University of Michigan for all my treatments, then of course INS. Changed and I can’t go there any longer. Any info or help or whatever you have to share with me, I am more than open to talk to the DR.’s and try it! Thanks for letting me share a bit. I am 64 yrs. Old, have a wonderful loving kind Husband, and four great adult children and 12 sweet grandchildren. Blessings to each of you and May you have some pain free days or at least hours! Thanks again…Hubbard

Which medications?
 

Dear "DontTouchIt",

I've had RSD for over 8 years and recently had a three level cervical 360 degree bone fusion. I have been on all of those drugs you mentioned and finally found a combination that appears to work as well as any and better than most. Keep in mind that RSD flares, at least for me, just happen and nothing works when those happen. Here is the combination I take:
* MS Contin 30 mg ( Morphine Extended Release ): I take 2 when waking, and 1 every 8 hours after that.
* Morphine Immediate Release 30 mg: 1 as needed for Breakthrough Pain.
* Soma 350 - 1 Four Times A Day
* Seroquel 100mg - One at Bedtime
* Klonopin - One twice a Day
* Zonegram - One at Bedtime

Because I have recently had bone transplants, I am unable to take ANY type of anti-inflammatory medication .... not even Motrin. IF I was allowed to take an anti-inflammatory medication, I believe I would have the perfect combination. I have worn the Fentanyl Patch, taken Lyrica, Gabapentin, Cymbalta .... you name it and I have probably tried it.

I have used Dilaudid. Dilaudid worked great as far as stopping pain, but within 2 weeks, I was needing my dosage increased and then increased again and again. When my doctor switched me to Morphine, I went through horrible withdrawal from the Dilaudid .... and that was with me taking a large dosage of Morphine. The KEY is the Morphine EXTENDED RELEASE (MS Contin or Morphine Sulfate ER). It keeps a steady dosage (better than the Fentanyl for me) and then the Imm Release helps the Breakthrough.

I noticed an improvement when he added the Seroquel and Zonegram at bedtime. I sleep soundly and a good nights sleep always helps me.

I hope this helps you. If you are like me, you have been through so many medications that did not work and you begin to believe there isn't such a thing as a medication that does. There isn't! It WILL take a combination of medications to keep your RSD under control. The trick is to find a physician who is willing to work with you and change the dosage as you need.

I also have cancer and I have worked extensively with Cancer Pain Management Physicians. DO NOT have a Cancer Pain Management Physician as your primary pain managment doctor. I've been there. They do not understand RSD and will treat you like they treat their cancer patients.

That is my two cents. I hope you can find a doctor who works with you and realizes you will need a combination of drugs, not just a narcotic or two.

Good Luck,

I would've be certain Lyrica was a big fat placebo if it weren't for all the side effects. It did nothing for me. Hydrocone 5 or 10mg helped...