[guitarguy]

Hello,

I have been suffering with CRPS/RSD since 2007. I am 45. I tried everything and the only thing that helped was Nucynta as it took all the pain away. However, I had some side effects and my family didn't like me to be taking pain meds so I stopped months ago.

I started going natural with Kratom which helped great but my tolerance build quickly and it doesn't work well now.

I have nothing for pain now. I even tried to work out today but walking is difficult as it feels like my feet are broken and burning.
Trying to do cardio my feet get icy numb and painful. I can't bend my wrist or elbow much and I used to love weightlifting but without pain relief it is agonizing to workout.

My left arm and hand turns purple and ice cold and I can't even touch it without horrific pain.

I still see a pain doctor and contemplating going back to nucynta long acting in order to have a life again.

I want to see specialist in RSD/CRPS. Does anyone know of any good doctor's in or near Philadelphia, PA or the surrounding suburbs?

[Littlepaw]

Hello Guitarguy,

I am sorry to read you are suffering so much right now. You deserve some of your life back. Getting your pain under control is imperative. Living in constant pain without any treatment is exhausting and drains the soul. It also contributes to centralization. I understand people not wanting to take meds but sometimes all the gentle exercise, meditation, supplements and alternative therapies in the world aren't enough. If you have found a med that helps you without intolerable side effects and your doctor thinks it is safe and beneficial then take it at the lowest dose that gives you relief.

Your family surely has your best interest at heart not wanting you on pain meds, but not being able to function is a terrible option.

Nucynta has an atypical action in that it also addresses neurotransmitters not just opioid receptors. Did you ever try any of the TCAs? I find nortriptyline helpful and it keeps me off narcotics. It might be worth revisiting the options with your PM. One problem with opiates is the hypersensitivity they can cause, if you can stay off them that would be great. If not, do what you need to enjoy your life and take care of yourself.

Instead of weightlifting right now, you might try getting in a pool for the time being to keep your circulation and your spirits up.

I hope you get relief soon! Sending gentle hugs,

[Neurochic]

Originally Posted by guitarguy

Hello,

I have been suffering with CRPS/RSD since 2007. I am 45. I tried everything and the only thing that helped was Nucynta as it took all the pain away. However, I had some side effects and my family didn't like me to be taking pain meds so I stopped months ago.

I started going natural with Kratom which helped great but my tolerance build quickly and it doesn't work well now.

I have nothing for pain now. I even tried to work out today but walking is difficult as it feels like my feet are broken and burning.
Trying to do cardio my feet get icy numb and painful. I can't bend my wrist or elbow much and I used to love weightlifting but without pain relief it is agonizing to workout.

My left arm and hand turns purple and ice cold and I can't even touch it without horrific pain.

I still see a pain doctor and contemplating going back to nucynta long acting in order to have a life again.

I want to see specialist in RSD/CRPS. Does anyone know of any good doctor's in or near Philadelphia, PA or the surrounding suburbs?

You have had CRPS for 8 years now. The harsh reality is that you are likely to have it for the rest of your life to a greater or lesser extent. You need to think about your pain control and medication as something you are going to need for the rest of your life, not just for a week or a few months.

You need to set aside your family's objections to the medication you decide to take. To be honest, its got nothing to do with them. You are an adult and you are the one in agonising pain. You are the one who is suffering, not them. I am certain that none of them has experienced severe, chronic pain so they only understand the mindset of someone who takes medication for a very short time to deal with acute pain like a headache and then stops taking it. You are not in that kind of situation. Your family will not be able to understand the amount of pan you are in without taking this medication. You would't tell someone who was diabetic to take insulin for a few weeks or months and them encourage them to stop taking it, would you? The kind of chronic pain you are having with you CRPS is much the same - you will need to manage that pain, most likely for the rest of your life.

One of the important things to consider with CRPS is that uncontrolled pain tends to become worse over time. It is not like having a headache or a broken arm where you can just suffer the pain and eventually it will go away without causing you any problems. It is really important to try and control as much of the pain as possible to minimise the pain levels that you could suffer from in future. Your family probably don't understand this very important aspect of chronic pain management. CRPS is also a much more complex medical condition and pain is only one element of the problems it can cause. However, if you can control your pain, it will allow you to keep more active and to use the affected part(s) of your body much more - this minimises lots of the other problems that CRPS can then cause you like muscle atrophy, circulation problems, movement problems, osteoporosis and even additional pain that is actually caused by not using the particular body part.

You need to try and explain to your family but if they don't understand then its important to ignore their objections and do what is best for you. Most people with CRPS would be over the moon if they could find a single medication that would have the amazing pain relieving effect that you have had from Nucynta. In the grand scheme of things, it is not a particularly powerful opiod - it sits somewhere between tramadol and morphine.

Our cultures have demonised this kind of medication because it is abused by some people but your family need to get over their misunderstandings and misplaced concerns. These drugs all have absolutely valid medical uses and are invaluable for chronic pain patients if they work for them and are used properly. I use fentanyl as one of several drugs to manage my CRPS pain. It is 80-100 times stronger than morphine and it is also a drug that is abused by people. That doesn't mean that I shouldn't use it for legitimate and necessary pain management purposes. It can be extremely difficult to stop taking it because your body becomes physically dependent on the drug - I am not the least bit concerned about that because I fully expect that I will have to take it for the rest of my life. Proper management also helps to prevent or stops your body developing a tolerance to this kind of medication so that it can continue to remain effective without taking bigger and bigger amounts.

Please find a good pain management doctor as soon as you can and discuss your medication options. If you can get your CRPS pain under such excellent control with minimal or at least bearable side effects using Nucynta then you are very, very fortunate and your family should actually be pleased that you are taking it! As Littlepaw says, there may be other medications it is worth you trying but please, please don't be guided by what your family think. Help educate them but if they don't 'get it' or still 'don't like' you taking pain medication then you need to ignore them for the sake of your health.

[guitarguy]

Hi,

Thanks for the kind words of support.

Regarding meds, I have taken Cymbalta but never noticed it helping.
Is that a TCA?

Also Neurontin and Horizant. Not much help.

Best are Nucynta and MS Contin for me thus far.

Regarding family. My father in law talks about his back pain due to multiple surgeries and back problems, that if he can suck it up, I can too without meds. He basically says my pain can't possibly be as bad as his back pain. I find those comments and comparisons to be insulting and ridiculous!!! They always say that pain couldn't possibly be that bad. They told me I can't take pain meds forever. They say I am better off just dealing with it. Angers me!

They get upset too because at times Nucynta can make me anxious and can effect my skin.
They send me articles about people losing their family and job over pain med addiction.
I had a lot of pressure to stop.
I was having side effects but nothing compares to the never ending torment of this CRPS.

I am trying Kratom and Tramadol for the next month or so. It was hell coming off the Nucynta. If I still have poorly managed pain, my doctor wants me back on Nucynta.

[Neurochic]

Originally Posted by guitarguy

Hi,

Thanks for the kind words of support.

Regarding meds, I have taken Cymbalta but never noticed it helping.
Is that a TCA?

Also Neurontin and Horizant. Not much help.

Best are Nucynta and MS Contin for me thus far.

Regarding family. My father in law talks about his back pain due to multiple surgeries and back problems, that if he can suck it up, I can too without meds. He basically says my pain can't possibly be as bad as his back pain. I find those comments and comparisons to be insulting and ridiculous!!! They always say that pain couldn't possibly be that bad. They told me I can't take pain meds forever. They say I am better off just dealing with it. Angers me!

They get upset too because at times Nucynta can make me anxious and can effect my skin.
They send me articles about people losing their family and job over pain med addiction.
I had a lot of pressure to stop.
I was having side effects but nothing compares to the never ending torment of this CRPS.

I am trying Kratom and Tramadol for the next month or so. It was hell coming off the Nucynta. If I still have poorly managed pain, my doctor wants me back on Nucynta.

Cymbalta is not a tricyclic antidepressant - it is an SNRI. The tricyclic anti-depressants are an older class of antidepressants and have been around a long time but they can have significant benefits in reducing neuropathic pain. The thing is this, you can't assume that because one anti-depressant in a particular 'class' or type doesn't work for you, they will all have the same effect. You need to work your way through all or at least a number of them to know whether any of them will or won't work. Just because Cymbalta didn't help you, doesn't mean that a different type of antidepressant won't help. It can be a long, slow and tedious chore to work your way through different drugs but if you find one that helps and has acceptable see-effects then it is worth the effort.

I'm not surprised your doctor wants to put you back on the Nucynta given the excellent results you seem to have had. Are the periodic problems the Nucynta gives you with anxiety and your skin worth putting up with for the amount of pain reduction you get? If they are worth it TO YOU and ONLY YOU, then just get on with it and take it if the tramadol and kratom don't work sufficiently well for you. Its your decision in conjunction with your doctor, not anyone else's decision.

I so often read or hear about people with crippling CRPS whose biggest concern is how they will get off the drugs their doctor is wanting to prescribe for them to try. Lots of people won't even consider taking certain drugs just in case they might have issues stopping them in the future. I can't understand that. They would rather live with excruciating pain and poor quality of life than risk just trying something that, in fact, they may well have no/few issues coming back off. Its really important to give yourself the very best chance of getting the pain from this condition under control as much as possible. Like I said, the chances are high that you are going to have this pain for the rest of your days so its far more important to find medication that works and gives you a decent quality of life now on the basis that you are unlikely to be coming off it. Deal with the problems you have got now so you can have a good quality of life and can use your hand/arm thus, ironically, giving yourself the best chance of ridding yourself of the underlying CRPS. Don't fixate on the issues you might or might not have one day in the distant future. If you have to come off it one day then yes - it might be difficult - but deal with that problem if and when it arises in the future.

You are 45 years old - why do you let these relatives bully you and push you around? Its none of their business what medication you take. Why do you even tell them what medication you are being prescribed? Its got absolutely nothing to do with them. Ignore all this crap they are saying and the garbage articles they are sending you - throw them straight in the trash. They can only pressure you, upset you and make you feel angry if you let them. Personally I would pity them - I pity their ignorance and lack of intelligence. They clearly know nothing about CRPS, know nothing about modern thinking in chronic pain treatment and opiod medication. Oh and they obviously don't understand the difference between addiction and physical dependance - that's one of my personal 'pet irritations"! You absolutely CAN take your pain medication forever if you need to - that's just another indicator of their lack of intelligence. I fully expect to be taking mine for the rest of my life and I'm the same age as you.

How your father in law chooses to deal with his back pain is his business but its an entirely different medical condition and entirely different pain. No two people with back pain arising from the same underlying damage would have the same type or level of pain, nor would they cope with their equally well. Its not a competition to demonstrate how big your balls are based on how good you are at suffering!!

Have confidence in yourself and your decisions about the ways you choose to manage your own pain, including the drugs you choose to use based on your doctor's advice. Ignore your idiot relatives and be more assertive if they try to pressure you. What you do is none of their business and its a massive invasion of your privacy for them to keep interfering. You don't need to be horrible or destroy family relations but be absolutely firm, have the courage of your convictions and don't let them mess you around any longer.

[EnglishDave]

Great Post, Neurochic.

Stand strong Guitarguy.

Dave.

[guitarguy]

Originally Posted by Neurochic

Cymbalta is not a tricyclic antidepressant - it is an SNRI. The tricyclic anti-depressants are an older class of antidepressants and have been around a long time but they can have significant benefits in reducing neuropathic pain. The thing is this, you can't assume that because one anti-depressant in a particular 'class' or type doesn't work for you, they will all have the same effect. You need to work your way through all or at least a number of them to know whether any of them will or won't work. Just because Cymbalta didn't help you, doesn't mean that a different type of antidepressant won't help. It can be a long, slow and tedious chore to work your way through different drugs but if you find one that helps and has acceptable see-effects then it is worth the effort.

I'm not surprised your doctor wants to put you back on the Nucynta given the excellent results you seem to have had. Are the periodic problems the Nucynta gives you with anxiety and your skin worth putting up with for the amount of pain reduction you get? If they are worth it TO YOU and ONLY YOU, then just get on with it and take it if the tramadol and kratom don't work sufficiently well for you. Its your decision in conjunction with your doctor, not anyone else's decision.

I so often read or hear about people with crippling CRPS whose biggest concern is how they will get off the drugs their doctor is wanting to prescribe for them to try. Lots of people won't even consider taking certain drugs just in case they might have issues stopping them in the future. I can't understand that. They would rather live with excruciating pain and poor quality of life than risk just trying something that, in fact, they may well have no/few issues coming back off. Its really important to give yourself the very best chance of getting the pain from this condition under control as much as possible. Like I said, the chances are high that you are going to have this pain for the rest of your days so its far more important to find medication that works and gives you a decent quality of life now on the basis that you are unlikely to be coming off it. Deal with the problems you have got now so you can have a good quality of life and can use your hand/arm thus, ironically, giving yourself the best chance of ridding yourself of the underlying CRPS. Don't fixate on the issues you might or might not have one day in the distant future. If you have to come off it one day then yes - it might be difficult - but deal with that problem if and when it arises in the future.

You are 45 years old - why do you let these relatives bully you and push you around? Its none of their business what medication you take. Why do you even tell them what medication you are being prescribed? Its got absolutely nothing to do with them. Ignore all this crap they are saying and the garbage articles they are sending you - throw them straight in the trash. They can only pressure you, upset you and make you feel angry if you let them. Personally I would pity them - I pity their ignorance and lack of intelligence. They clearly know nothing about CRPS, know nothing about modern thinking in chronic pain treatment and opiod medication. Oh and they obviously don't understand the difference between addiction and physical dependance - that's one of my personal 'pet irritations"! You absolutely CAN take your pain medication forever if you need to - that's just another indicator of their lack of intelligence. I fully expect to be taking mine for the rest of my life and I'm the same age as you.

How your father in law chooses to deal with his back pain is his business but its an entirely different medical condition and entirely different pain. No two people with back pain arising from the same underlying damage would have the same type or level of pain, nor would they cope with their equally well. Its not a competition to demonstrate how big your balls are based on how good you are at suffering!!

Have confidence in yourself and your decisions about the ways you choose to manage your own pain, including the drugs you choose to use based on your doctor's advice. Ignore your idiot relatives and be more assertive if they try to pressure you. What you do is none of their business and its a massive invasion of your privacy for them to keep interfering. You don't need to be horrible or destroy family relations but be absolutely firm, have the courage of your convictions and don't let them mess you around any longer.

Is it worth it to go to a respected Neurologist or similar doc who knows CRPS well? I met women on a plane recently, sat next to me and had CRPS/RSD! Go figure. She flies up from Florida to Philadelphia for treatment - pain pump. I forget where she goes. Ugh..
I heard Drexel Univ. Med Cntr.

Thanks for encouragement. I lacked confidence and self worth as a child for reasons I won't get into, but it still impacts my actions and decisions.
I have always had issues standing up and defensing myself and hat confrontations. However, it is something I work on and am getting better.
I never trusted my decisions growing up and that is part of why I almost instinctually look for approval. I will say my mother can be rather shallow at times. Appearance is key with her at times!

Finding people to believe me when I first became ill, was tough. My team of doctors I first saw, along with my primary all said, just stop thinking about it, and it will go away. It is just in your head she said (Primary doc) and her partner said that I never seemed crazy or loony in the past, so it is most likely not in my head. Really? I got angry with them, voiced my opinion and my opinion of them and never went back! Even my father in law says anyone suffering from chronic pain, personality disorders, bipolar, are just crazy and need a good talking to. Really? Ugh! My step father has had back surgery, has a bad back and is the one who said that you can't stay on pain meds for life. He took them for a while - years for his back. He was also addicted to crack for years. He is clean now and I think views me in a similar light. Not fair!
If one more person in the family tells me to stop exaggerating and man up - I am going to scream!

My parents care but they are misguided and worry about stupid things.
For example, my mom always tells me my current doctor is not that good since he continued to prescribe Nucynta even after my skin broke out. I have a slight allergic reaction with higher doses. Then I pick and it becomes aczema.

Today I told my parents that if I decide to go back on Nucynta, it will be my decision with my doctor, period!

One thing that bothers me is that they are not all convinced that I am suffering from CRPS, and might be something else. They thought Lyme disease and I was treated but never got better. I have MGUS so they thought it may be that.

CRPS makes the most sense. Even my doctor is not convinced it is CRPS because he says you arm is not sensitive or swollen and if it were CRPS, I wouldn't also have pain in my right foot and sometimes both feet. They don't understand it can and often spreads. I try to explain this in medical terms, etc.

Many people also assume you need to have every symptom on the list to be CRPS and that everyone goes through the stages. I tend to grasp complicated processes, theories, ideas and things related to the human body and mind.
It is easy for me to understand connections and how things work and I am very in tune with my body. They lack a lot of this sense.

I have to educate this doctor about CRPS.
I read all the time that some people stay in stage 1!
My pain and tingling started within a week after my ulnar entrapment surgery, and continued to get worse, and then sort of evened out.
When symptoms started, they also began in my feet too - mostly the right foot.

Not always, but sometimes I will see my foot or hand turn blue, patches of blue, mottled skin, some swelling at the surgery site and in the hand. I also periodically get a temperature drop in my bad foot and hand/arm, can be very cold! I even experienced body temp dropping a lot.
Lately with flare ups, I can hardly touch my effected limb.

The person who I feel should know what meds/herbs I take is my wife. Nobody else needs to know. She did express that she wouldn't be able to live with me if I continued to have the side effects like anxiety, and being a bit hyper. I think taking the long acting and lowering the dose could help.

[Littlepaw]

I would steer away from doctors you have to educate about CRPS except as a stop-gap measure until you find one who does. If a doctor doesn't understand this disease I don't see how they can treat you for it. It is complex and as you know, symptoms change and morph over time. By all means find someone experienced with CRPS whether they are neurology or anesthesiology.

Drexel is where the esteemed Dr. Schwartzman was before he retired. His treatment and research interest was CRPS so I imagine they are quite familiar with it there. Dr. Philip Getson, D.O. is in nearby Cherry Hill. He has done talks for RSDSA and I am pretty sure he prescribes low dose naltrexone which may be something new to consider. It is currently under study by Stanford for use with CRPS. There are also other doctors listed by state on the RSDSA website.

Chronic pain is its own disease process. There are measurable changes in the spinal cord and in the way the brain interprets pain. If you had any sort of nerve injury there are a host of chemical and physical changes that occur in the nerve as a result. All of these things dramatically alter the way a chronic pain patient's body and nervous system interpret pain.

This is not your fault. This is not in your head (unless you wanna count brain changes). And it is not something you can just buck up and tolerate. After 8 years of pain your system is no longer like a normal persons and should not be treated as such.

People who have not had severe, debilitating pain cannot understand this as Neurochic said. You will need to educate them on chronic pain and changes to the nervous system from CRPS. Sometimes I find this is best done as a printed out summary from an expert so people can firmly grasp the black and white version written by an outside party. There is a recent post just a few lines down on the CRPS forum with an nice info link from Bluesfan.

Hang in there and take care of yourself. Ask your family to take a look at some easily understood articles. You need their support not their ire! If they can't be supportive they can at least get educated enough to be neutral.

IMHO - I too would be a little concerned about a med you have an allergic reaction too...just sayin'.

[RSD ME]

hi guitarguy. sorry to hear you have rsd. i see a pm dr to help manage my pain. neurontin and a strong pain killer help me to deal with the pain a little better. that along with an antianxiety and anitdepressant for the stress and insomnia that rsd causes me. i was taking advil to for imflammation but i had to cut back on that lately because of stomach problems i am having lately. i hope that you can find a good pm dr to help you manage your pain better. i don't live in pa so i can't refer you to anyone but i do think there is a dr schwartzmann at drexel univ who treats people with rsd. there are good drs out there, you just have to keep searching for them. hope you feel better soon.

[guitarguy]

I really have no life. In 2007 my changed and been going down hill since.

I got my Nucynta prescription and ot helps so much with pain.
However, the stupid pharmacy did not have enough Nucynta to fill the month prescription and the next was not till next week. So they gave me half a month's worth of meds and said to ask the doctor for a prescription for remain month.
They can't do partial orders with narcotics. What a load of horse manure. So I have to suffer and barely live thanks to their stupid rules.

I am going to have the pharmacist call my doctor to ask for the script. It isn't my fault the system is screwed up.