Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hi everyone,
I have RSD in my Left arm and possibly it starting in my right hand. I also have chronic pain from an injury that I got when I was 19 years old that caused 3 bulging disc's in my lower back that has being going through natural fusion. The T2/3 have gone bone to bone, but the other two are still in the fusion process. Anyway- as I am now 41 I was no stranger to severe pain when I developed RSD about a year and a half ago from a fall and learned a whole new level of pain 24/7 that has brought me to my knees finally. I no longer can work- which I could during the fusion process in my back, can barely function or think. I have brief moments of clarity that leave me terrified at what is happening inside me, and that my life appears over- just a daily struggle to survive the pain that blends into months and I don't even seem to notice. The last 7 months after surgery on my left hand are a blur of pleading to doctors to help me and just trying to survive a minute at a time.
Has anyone tried alternative medicine or a naturopath for the pain? With the severe problems in my left arm, I am now on Norco about 6 per day that don't do anything more than take the edge off of the pain, Neurontin 900 mg a day ( which I am told is low, and needs to increase but I become a exhausted zombie on it with lots of side effects but my doctor just says let me know when I can tolerate it and then he'll increase it) the neurontin seems to dull a little the severe reaction to touch/and the burning. Baclofen 30 mg per day for the severe muscle spasms( which has been the best help so far), Cymbalta 30 mg to help with the nerve pain and depression somewhat ( this is the highest dose I could tolorate...) and 2400 mg a day of Ibuprofen to help with the severe pain/ swelling I get in my neck, shoulder and brain.
There has to be something better? What good is life if you spend it a painful zombie?
If anyone has tried alternative medicine- a natropath, chinese medicine, etc I would love to have you post your experience, good or bad! I am determined there has to be a better way to help me, and I will find it!
My doctor is pretty much worthless, but atleast he will see me ( long story- see some of my other posts to get a small view of that sorry history) and even when he told me what was wrong he just wrote down RSD and told me to google it, the only thing he has added to what I was already taking was the neurontin, the baclofen was my idea after researching it, and he seems willing to try whatever I research without even expaining what is happening to me. So I have been busy researching it but not very happy at the treatments modern medicine seems to offer.
I will not allow anymore surgery, or injections of any kind, radiation etc to be done on my body. I am looking for help in non- invasive ways, to help my nerve system get back on track. Please post your experinces, and maybe it will help me figure out what to try next. Since my doctor is so unhelpful all suggestions would be welcome.
Thanks for listening!
I have RSD in my Left arm and possibly it starting in my right hand. I also have chronic pain from an injury that I got when I was 19 years old that caused 3 bulging disc's in my lower back that has being going through natural fusion. The T2/3 have gone bone to bone, but the other two are still in the fusion process. Anyway- as I am now 41 I was no stranger to severe pain when I developed RSD about a year and a half ago from a fall and learned a whole new level of pain 24/7 that has brought me to my knees finally. I no longer can work- which I could during the fusion process in my back, can barely function or think. I have brief moments of clarity that leave me terrified at what is happening inside me, and that my life appears over- just a daily struggle to survive the pain that blends into months and I don't even seem to notice. The last 7 months after surgery on my left hand are a blur of pleading to doctors to help me and just trying to survive a minute at a time.
Has anyone tried alternative medicine or a naturopath for the pain? With the severe problems in my left arm, I am now on Norco about 6 per day that don't do anything more than take the edge off of the pain, Neurontin 900 mg a day ( which I am told is low, and needs to increase but I become a exhausted zombie on it with lots of side effects but my doctor just says let me know when I can tolerate it and then he'll increase it) the neurontin seems to dull a little the severe reaction to touch/and the burning. Baclofen 30 mg per day for the severe muscle spasms( which has been the best help so far), Cymbalta 30 mg to help with the nerve pain and depression somewhat ( this is the highest dose I could tolorate...) and 2400 mg a day of Ibuprofen to help with the severe pain/ swelling I get in my neck, shoulder and brain.
There has to be something better? What good is life if you spend it a painful zombie?
If anyone has tried alternative medicine- a natropath, chinese medicine, etc I would love to have you post your experience, good or bad! I am determined there has to be a better way to help me, and I will find it!
My doctor is pretty much worthless, but atleast he will see me ( long story- see some of my other posts to get a small view of that sorry history) and even when he told me what was wrong he just wrote down RSD and told me to google it, the only thing he has added to what I was already taking was the neurontin, the baclofen was my idea after researching it, and he seems willing to try whatever I research without even expaining what is happening to me. So I have been busy researching it but not very happy at the treatments modern medicine seems to offer.
I will not allow anymore surgery, or injections of any kind, radiation etc to be done on my body. I am looking for help in non- invasive ways, to help my nerve system get back on track. Please post your experinces, and maybe it will help me figure out what to try next. Since my doctor is so unhelpful all suggestions would be welcome.
Thanks for listening!
I would love to talk to you about all the things I have tried and medications I have taken. Very fortunately for me I have found a pain management dr who really knows her stuff when it comes to RSD - and let me tell you, so do I. What is new to me is my spinal problems and my chiari diagnosis. I am so glad I found this pain management dr, she is working with me in an effort to see if RSD has spread to other parts of my body. I think the pain in my feet and legs may be from RSD and not from my back or from the chiari - but from the spread of RSD! Typical swelling, color changes, temperature difference, etc.
My biggest concern for you - YOU ARE TAKING WAY TOO MUCH IBUPROFEN!!!!!!!!!!! I know why you are doing it, I did it too. Even more. But it is toxic to your liver and kidneys. It is very serious. Trust me, I completley understand - I would take MORE than that PLUS naproxen, tylenol and asprin. I was desperate.
Neurontin does not work for the burning in my legs. But cymblata does. I take 60 MG though. It also helps with my mood. I never had balcofen or norco. I don't even know what they are honestly. Injections and nerve blocks either work or don't work. For some reason, stellate ganglion blocks STILL send the RSD into remission in my hand and arm when I have a flare up. But no nerve blocks have worked on my legs.
I have done so much research that suggests that accupuncture is a bad idea for RSD patients because of the needles. Did you know you should ask for pediatric needles if you get bloodwork or IVs? Also - get blood pressure checked on unaffected arm. So, be careful with alternative treatments.
RSD has it's own pain scale actually. It's horrific pain rated up there with child birth. Serioulsy. You are TAKING WAY TOO MUCH OVER THE COUNTER MEDICATION! You will poison your organs. The biggest help for RSD that is not treated by nerve blocks is movement, and the only way to get moving is with adequate pain medication. You need a pain management dr that understands RSD pronto.
There other treatements specifically for RSD - but I'm sure you have heard of them in the other group? You need pain management now. I'd love to chat with you... send me a message if you'd like.
I hope you find something, anything, to help...... Jennifer
I am not off all meds by any means, but I am off the Neurontin's, Cymbalta's, Lyricas of the World. I am only on pain medications for my mechanical pain due to the failed fusion. Is worth a try hun. Good luck to you!
and yes ppbbls, I have noticed we have a lot in common from some of your replies to my posts, and your answers to some of mine.
As for your worries ( and mine) ALL the medication I am taking is perscribed, even the ibuprofen. Because the rsd has traveled way up my arm into my neck and head, I get severe swelling in the neck, upper shoulder and shoulder blade. I also sadly am getting swelling in my brain. I go into a kind of fit where I hear a loud bell like sound, then into muscle spasms and shaking with lightning like pain all throughout the left side of my head. My doctor says its the rsd, just saw another dr, who concurs and mentioned cebrex? or something else- another anti inflamatory type medication that I would only have to take once a day. I often do not know if I have taken all my medication because of headache, mental confusion and had to get a daily organizer to put all the dumb stuff in so I know where I am in taking it during the day.
As for more surgery, spinal blocks, nerve blocks- it took an huge amount of pain to get me to do it once, and with the poor results and now RSD diagnosis, I am pretty sure I will never let them cut on me again, or stick me with needles.
I am a little off that way to begin with before all this, had my first child breach with no medical intervention or pain control, had my second pregnancy to birth with no doctors and at home, and rarely went to a doctor for help, even with my back so bad. Went to chiropractors instead, but they won't touch me anymore, afraid of nerve damage issues. Anyway I never did have much faith in the medical community, and have even less now.
I am going to try to talk to my doctor about that on Thursday, the norco (hydrocodone 10 mg/325 acetophenmen) doesn't seem to last longer than a few hours, and I have to take two. Taking one only seems to keep the physical dependency issues at bay. Lately, because of all my doctor's appointments I take as little as possible, no matter how bad the pain, so that I will have extra for when I have to "travel". I want to talk to him about changing to some other type of pain medicine but don't know how. He is short attention span and I get "one issue" per visit with him, no longer than 10 minutes or he gets upset.