Is your doctor a pain specialist and have they offered you Suboxone?
Hugs

Hello. I have CRPS type 2 in my right foot & leg. The intense burning you feel is the CRPS. it can be a hot burn or a cold burn. I have Fibromyalgia too. I am on an antidepressant, Pristiq for the Fibro pain. I take Gabapentin for the CRPS but have found it helps the Fibro pain as well. I take CBD, a nonphyscoacivte derivitive of marijuana, for pain, as an anti-inflammatory & for spasms. The thing I have found that helps the CRPS pain the most is marijuana. I take one Indica marijuana cookie at bedtime. It helps with pain, spasms, inflammation, relaxation and sleep. The Indica strain in the cookie is for all of those things. I am not a "pothead". I take it medically & just once a day. The strain of Indica also does not cause paranoia or anxiety. I live in a state where marijuana is legal. The marijuana has been a life saver for me. I can't believe how much it helps with the pain. I was in an ATV accident June of 2015 that crushed my right foot. There is a definite Nerve injury in the right knee & foot. Last summer my leg was useless. Now I can walk around my house. If I have to walk a distance I use crutches. Do you live in a state where marijuana is legal? Or medical marijuana is legal? Since CBD is nonphyscoacivte I believe it is legal in all states. You could try CBD or marijuana. The staff of the dispensary should be able to get the right strain for you to help you with what you need it for & to avoid the unpleasant side effects such as paranoia & anxiety. I hope this helps. Keep in touch:-)

I am a 49 year old female:-)

Hi tracy! Thx for responding yo me. Sorry about your accident. Glad ur able to walk around house now though!... I'm in wisconsin so it's legal yet. I've read about CBD oil helping. Do u use oil or does it come in another form?.. what kind of pain do u experience with fibromyalgia? Which were u diagnosed with first?

I take the CBD in a cookie. It is probably an oil they put in the cookie. A lot of people use the oil in a smoothie or in a breakfast cereal like oatmeal but you can just use a dropper & put it under your tongue. I was diagnosed with Fibro & Myofascial Pain Syndrome in 2003 but I have had symptoms & pain since I was a kid. It just took a long time to find out what was going on. I was diagnosed with Spondylolisthesis in my lower back & 1st sacral vertebrae in my early 20's. The CRPS/RSD was diagnosed July 28, 2015. A month after the ATV accident. It is a very painful condition. The Fibro causes burning pain, deep muscle aches, painful joints. The muscles will be stiff as well, tight. They can even be hard to the touch. There are other symptoms that can develop. IBS, irritable bladder, headache, sleep problems, depression, anxiety, sensation of swollen toes, fingers. I have even had the sensation of swollen teeth. There are other symptoms as well. The burning with CRPS/RSD is much more intense than Fibro burning. It is like Fibro on steroids. The Gabapentin has really helped with the Fibromyalgia pain that would breakthrough the Pristiq. The marijuana & CBD has helped the most. The Fibro support group suggests a book called Fibro for Dummies. I have the 2003 Fibro for Dummies, so I am sure it has been updated in the last 13 years. I sleep on a egg crate foam mattress topper & when I sleep on my side I use a body pillow. This was a recommendation from a Fibro therapist. She also said to avoid the news, stressful, gorey & violent TV. I watch my diet as well. The Fibro will also cause intense pain if you do something simple like dtub your toe. Fibro pain is more intense & lasts longer than it should when you hurt yourself. Like stubbing your toe or stepping on something. The Fibro pain will move around. One day it is in your shoulder & the next day the shoulder is OK but now it is in your knee. It can also cause you to sweat like crazy. There can be Fibro fog which feels like you are fuzzy headed, wonkey headed, trouble concentrating & memory problems.

Sorry, hit send before I was done. There was something else I wanted to add about Fibro pain but I forgot what it was. I have some pain upon touching my CRPS foot. Is that dystonia? Oh, sensitivity to heat, cold & humidity. I have that with the Fibromyalgia & the CRPS. I really hope you can find something to help with your pain. Look CBD up online & see if you can get some. If you have any other questions just ask. Gentle hugs:-)

I'm curious if 1 Dr. diagnosed you with all of these illnesses or if you ever sought a 2nd opinion? You've got many diagnoses that have the same symptoms, so it could be difficult to distinguish between them.

The Methadone conversion to Morphine is 2 to 1, so you'd be able to take 50mg of Methadone daily to equal the 100mg Morphine equivalent. That could be two 25 mg doses per day, on a 12 hour schedule. Since Methadone has such a long halflife you can go pretty long between doses.

The other med you mentioned was oxygen IR, I'm assuming that was a typo? You perhaps meant Oxycodone IR? You can also go the equivalent dose on it per day. If your Dr. is leaving this as your breakthru med, has he said what he's considering changing your LA med to? Most people who get good pain coverage from Methadone have a harder time finding the same coverage from other Narcotics. You'd have Morphine, Oxycontin or Fentanyl Patches to choose from, as far as Long Acting meds go. Suboxone can be used for a pain med, but it's not the most effective. There are also other off-label meds that would help with some of the nerve pain from the conditions you have like Gabapentin, Cymbalta, Neurontin, along with anti-inflammatory meds. Have you tried adding these types of meds to your Narcotics?

Acupuncture, massage and chiropractics are also commonly used for many of the illnesses you have, not sure if you've ever tried any of those.

If you can find a mix of medications and other therapies that work together, that's usually your best bet.

Thx for info Oldercper! It stinks but they have changed conversion ratio of methadone. On lower doses its4:1, on higher doses 12:1. My current dose has ratio of 8:1 per cdc/ government dosing calculations....yes, i have tried several muscle relaxants, cymbalta, savella, lyrics without success. On Neurontin for years, helps with some burning. I've tried accupuncture, chiropractic, reiki, exercise, PT and others. I try to exercise somewhat everyday n thst has helped to keep moving. .... I have got my many diagnosis from different doctors - but the more i research, the more i see a lot of these dx are actually CRPS instead....currently seeing a pain management doctor now, she's not licensed for suboxone.

Hi there. I'm sorry to hear about CRPS/RSD diagnosis. I've had it in left foot and leg for 19 years. At 1st they tried me on oxycodone, hydrocodone, long-acting/short-acting, etc. Finally, my very 1st doctor said "to hell with it" and started me on morphine. Long-acting and short. I was fine for 19 years, until this CDC crap.

At one point, my 1st doctor retired, and my beloved 2nd doctor died. I started looking for a new doctor. The only person handling pain in my area ONLY put patients on suboxone. He was known for getting addicts off pain meds and onto suboxone, and it does work for some pain. But my kidney stone doctor said it would interfere with my lithotripsies and my Phys Med doc said it was not a good drug for RSD. Having said that, I have NO beef with suboxone. I just know what I was told. My current PM doc ALSO says it has proven not to work with his RSD patients. Luckily, I was referred to HIM before I had to see the suboxone doc. I know there are people on this board for whom it works well.

With the new CDC guidelines, I'm wondering what they will decide to do with you. If this were pre-CDC Nonsense, I would tell you that I've done well on oral morphine. I have an online RSD friend who takes the patch, and one who has some kind of morphine pump. My 2nd doctor gave me info on THAT, but being terrified of needles and medical procedures, I was not interested.

I know exactly what you mean about RSD pain. Now that I'm decreasing my dosage, I feel it so strongly again. My left foot is cold, looks sweaty, and feels like a contradiction: an icy fire. Or, hot ice? RSD pain is SO difficult to describe! It takes your breath away.

I pray that you find relief, soon. I asked my 1st doctor (before I was properly titrated) to remove my foot. I thought amputation might be the answer. I actually would dream about things cutting off my foot. But they explained that I'd still have the RSD and phantom pain. That was 18-19 years ago, and I always wonder if it's ever going to be an option.

Good luck- I know it hurts and there are good people here who will talk and help you. I really, really, hope you get relief soon! God Bless!