I've had RSD now for ten years with almost no remodeling. I am now on only a few meds but my fentanyl dose is now 225mcg (three patches) every two days. I'm concerned about the tolerance I've built up to. Anybody else on such a high dose???? Or some alternatives people have found. I will say I'm in mild pain now with occasional flares.
Maybe should just cont on this path or try to get off it and try something new??? Thanks. Susan

I personally hated the fentanyl patch when I tried it. It made me feel severely under the influence. How do you feel on it and have you tried other options?

Tolerance is going to be an issue with whatever meds you choose. I've found that putting myself through the beginnings of withdrawals a few times a month and aiming for low to mid-level pain, has kept my dosages low for years. I also scale back my break through meds when I feel tolerance starting to creep up on me, and by sufferning through elevated pain levels for 3-4 days, I can avoid escalating my dosages.

The higher the dosages the worse the side effects, so it's always a balancing act.

If you aren't using any break through meds, using a smaller dosage of fentanyl and using break through sparingly as needed, might be worth a try!

Hi, Susan:

I have had RSD since August 25, 2001 (ten years and one month ago). My RSD is now generalized and internal. I use several painkillers:
-Duragesic (fentanyl) 125 mcg: one 100 mcg patch and one 25 mcg patch every 72 hours
-MSIR (morphine sulfate immediate release) 30 mg: one capsule once or twice daily
-Tambocor (flecaïnide sustained release) 200 mg: one capsule daily
-Inderal (propranolol) 40 mg: one tablet twice daily

1) Did your prescribing doctor tell you that you became tolerant to fentanyl?

2) Do you take any medications, foods, or drinks that are enzymatic inducers? Enzymatic inducers make medications like fentanyl less effective, which might explain you need such a high dose.

3) Did your RSD aggravate or spread, which might explain you need such a high dose?

4) Did you develop a new health condition that might explain you need such a high dose of fentanyl?

Quote: "I will say I'm in mild pain now with occasional flares." To me, it seems like your medication is working if your pain is mild and you have only occasional fare-ups of breakthrough RSD pain.

Quote: "Maybe should just cont on this path or try to get off it and try something new???" Only you and your prescribing doctor can make such a decision, depending on what is going on with you, according to the four questions mentioned above.

I hope this helps.

Hi, I've had crps spread to my lower back following a scs implant surgery to treat crps in my right arm. I have tried and been in all the medications that are recommended, I've had 4 ketamine low dose infusions, ive had 2 nerve blocks but nothing is working. I have all the symptoms of skin colour changes, night sweats, aching, burning pain, tightness/pulling feeling as well as shiny skin around the spinal incision where the leads were anchored. My pain specialist as well as the SCS implant representative has said that this is a new chapter for them! Everything feels like a guessing game! So I'm asking has anyone tried the fentanyl patches for pain relief or has anyone had a pain pump that had helped?

Tried it once but didnt get relief from it. Does dose need to be stronger or give these more time to work? How long does one leave these on their skin?

I've been on the fentanyl patches for about 3-4 weeks now. Started with 25mcgms for 1 week then moved into the 50mcgms just a few days ago.

They work for me so far and are the best form of pain medication I've had in awhile. I can see me increasing my dosage over the next month or so.

I'm a firm believer in "building up a tolerance" to medications. I have it happen to me a lot. I was also told by my doc, that the next step past fentanyl, would be a pain pump since there's really no script you can get for oral doses of morphine.

I wanted to let you know that I think perhaps your doctor is giving you misinformation about morphine. I have a script for oral morphine which I take round the clock. In addition to that I also have a pain pump filled with ropivicaine and fentanyl in case you ever get to the point of needing one.. I am here for questions if you have any.

Best of luck with the patches!

I am too am on round the clock oral Morphine. Tell your doctor about Morphine Sulfate or MS Contin. They have both IR and ER in oral morphine.

That all depends on your age as to whether or not your doctor will give you opiates but most pain will at 26+. If you are under 26, try lyrica and have them increase your dose asap high and fast. I took it for 8 years starting at 25mg bid (twice a day) ending at 250 my TID (3x) If your doctor is suggesting such a low dose of fentanyl (which only lasts 72 hours at most so weekly is a retarded dose) and he's telling you there is no oral morphine when if you're over 26, go somewhere else bc I know for a fact that there are so many options, ie: kadian sustained release morphine sulfate 15, 30, 50, 100, 200mg, also ms contin sustained release (morphine sulphate) 30, 60,100, 200mg. Msir (immediate release) 5, 15, 30, 100. I have been on opiates for 3 years because I was diagnosed too young for opiates but I am taking 20 my methadone twice a day, dilaudid 8mg three times a day, but for my doctors malpractice insurance (bc insurance doesn't give a **** if it works or if it will make life bearable if that combination might be too much for some people who don't have rsd) I have to go to the psychiatrist and get klonopin 2mg twice a day from them (it boosts the effects of opiates and decreases my tremors, spasms, and anxiety as well as help me sleep through the pain). I can only recommend this combo if you are opiate tolerate, near suicidal from pain, and if you start slowly and one at a time. Pharmacies hate this combo too bc of respiratory depression risks but if your lungs spasm like mine then you know it won't bother you. Good luck getting anyone too fill that unless you've been to that pharmacy for 5+ years (birth if you're below 35 in Florida) What state are you in?

I know a ton about our meds bc for one I'm a huge dork, in a lot of ******* pain and will seek out any way but death if it will help, majored in neuropsych, and used to adjust hospital and doctors med claims at United health group. For insurance or Medicaid /Medicare supplement programs, I HIGHLY RECOMMEND UNITED HEALTH GROUP INSURANCE because no matter what they really tell you, they will always waive all pre-existing medical liability but will never tell you even if your policy specifically states they "don't" cover them, because they'd rather keep your business than have you fight with an uneducated customer service representative who will never learn what a deductible really is, or explain your coverage limits correctly, or the same way twice

Methadone is the best stabilizer for our kind of chronic pain that is widely available! Don't be afraid of what works (see the House MD episode when he gets on methadone "It doesn't help my pain. It ELIMINATES it!" spoiler - - Dr. House has RSD

One typically needs at least 3 days to see any effects from Fentanyl when first starting it. This is the time needed for the blood levels to reach "steady state"... and begin to really work.

If you only tried it for a day...and gave up...then you didn't give it a chance to get going for you. Of course dose is an issue, but some people don't respond well to opiates for nerve pain. It can be highly individualistic.