Who doesnt take pain meds and why not?
 

For example, is it because you've learned to control pain or accept it? Or you do not have pain that requires meds? Or you use some other method which works wholly or partially like acupuncture, biofeeback or some alternative method?
Also how far along are you after your diagnosis. Thanks
Noah

Hi Noah,
 

The only pain med I use is the Lidocaine patch for my shoulder and pelvic area. I have been off of my Methadone for about 8 or 9 months.

I was able to get to this point through Physical Therapy, blocks, and triggerpoint injections.

I have had the same PCP for over 19 years. He's also a Sports Medicine Dr. and does councelling. He did it all for me. He sent me out to many Drs. first to get diagnosed then to get treated. The PM Drs. I saw were jokes, the same as the Neurologist. I finally found a good Neurologist for MS after seeing about 5. He did take care of RSD but now he only deals with MS. He didn't take care of my RSD anyway. MY PCP did it all.

I ordered him Dr. Hooshmand's book for Christmas one year and he read it and learned what he thought would help him with my pain. The triggerpoint injections did the best for me but they take many. He used Lidocaine and also used ketamine for the injections.

I do pretty good if it weren't for the pelvic pain which is nerve pain and also I feel this last winter on ice and messed up my shoulder.

The only time I see my RSD come out is when the barometer changes then I go nuts from the pain.

I think you almost have to treat RSD healing like a job. You have to find the right Drs., study and help them with what might help you, and just keep at it.
You sure can't forget it's there.

Ada

I don't use them on a daily basis. Only during a flair up or a few days before a stressful event, like my son's wedding. I had a SCS had it removed after 3 years. I use Ativan to control anxiety which is a pain aggrivator. I see a chiropractor 3 times a week sometimes every day if need be. I have had RSD for 9 years full body for the last 6. I tolerate a lot of pain. I have chosen to not deal with the side affects of the heavy pain meds. In the beginning I tried a lof of different things and decided to go this way.

However, I don't work when I worked I needed the pain meds. and my kids are young adults. I also have a wonderful husband. Every day I ask God for his peace that passes all understanding. I know without the mercy and grace of God my quality of life would not be the same.

Take care,
Sherrie

The only pain medication I take is Ketamine when I am in a really bad pain flare.

I used to be on LOTS of medications to try and control my pain but they weren't doing anything and the side effects really outweighed the benefits.

Eventually, me and my doctor both said we felt that it was best if I came off them seeing as they weren't doing anything for me. My doctor was concerned about me being on so many meds at my age as he feared it could cause problems in later life.

I still have lots of pain on a daily basis (it is usually about a 8 out of 10 on the pain scale) but I guess after so long, you kinda 'get used to it' as it is normal for you.

I think it really depends on the person as to whether you take meds. If they are working for you and dont cause any nasty side effects then that is great and I can see why you would take them as they improve your life! In my case though, they didn't do a thing for me so I chose to come off them. It's hard at times knowing that I dont have anything to help with the pain but I know nothing really helps me anyhow other than the Ketamine and that only helps a little now as my body has built a tolerence to it.

How Is It Possible Not To Take Medications With RSD?
 

I take 21 pills per day. One pill led to another, then another; side effects of one med to another, increased chronic pain, as the RSD brought many complications. The severe,burning pain brought on chronic pain, depression/anxiety, insomnia, hbp, gerd, inflamation.

I also use pain patches, heating pad, and a TENS Unit.

http://dl7.glitter-graphics.net/pub/...eho6fab3la.gif

How Is It Possible Not To Take Medications With RSD?

I wish I did not have to take any medication.

Dew/Pain Meds
 

I am so happy for those who do not have to or, choose not to take pain meds. I have found I can not live a "normal" productive life without them. I am still trying to find the right combination. I have had TOS for 10 years and recently diagnosed with RSD. I was pain free from the TOS from 2002 until 2006(?). Just long enough to have my 4th child. I take 8-9 percocet per day plus neurontin. I am going to Mt. Sinai next week and praying for some sort of answer. Right now pain is through the roof but only have 1 pill left for today so have to take it easy. I have to limit because as we know, doctors don't understand if you run short.

I have used the lidoderm patches and they hadn't worked. I have heard people on this site saying they work so I started again yesterday and hope it helps.

Everyone has to do what is best for them and their bodies. My only choice has been medication. I tried PT, biofeedback, acupuncture and many different doctors.

Linda

I work hard to try not to have to take pain meds for a few reasons.

1. I'm either allergic to or highly sensitive to the meds prescribed for our condition, so many meds have been now been ruled out.
   
2. I want to avoid further complications from the side effects and long term use.
   
3. I want to try to keep my cognitive abilities as clear as possible.

This does not mean that I don't take pain meds, I just try really hard to manage without them.

My basic pharmacological treatment is the lidocaine infusions every couple of weeks. For now this drug seems to keep the monster at bay with the least side effects. I can go for many days without having to take any pain meds when I'm getting my lidocaine regularly.

For daily maintenance will I employ a number of different tools to manage the rsd depending on what is going on, my stress levels, weather conditions etc...

I have to keep it moving, keep warm and remember to breath. Pacing my activities really helps me to manage things.

Learning to say no has been a huge lesson for me.

Right now I am going through a very high stress transition in my life and have not had a lidocaine infusion for 5 weeks now. The whole left side of my body in engaged in the pain dance.

For days like today I have Tylenol 3's and Oxycontin 5 mg, typically 5 mg is all I can handle. Tonight I opted for Oxycontin and currently have my left leg and arm wrapped in heating pads with my foot on a hot water bottle. A hot spa bath sounds good about now.

I also take oxazepam for sleep daily.

MsL

Hey Dew,

If we are talking medications I take 11 pills a day because of my RSD. I understood the question to be about pain meds. I use them just not on a daily basis. I am sure my chiropractor is a big reason I don't need more pain medication than I take. He is an activator DC he can't use his hands I'm to sensative. Lidocain patches are no good for me my pain is full body I need a lidocain suit (just kidding). I tried the stronger patches duragesic (spelling ?) I was sick all the time and I really didn't like the side effects. My physcologist taught me a great relaxing routine. I know I heard people say don't use ice for RSD. I have used it for 9 years and it helps me. My big concern with PAIN medications is, I have full body RSD and it isn't getting any better. I will probably need daily pain meds in the future so I am trying very hard now to manage my pain with as little PAIN medications as I can, so if I need them in the future I won't be immune to everything. It's what works for me and it took me 9 years to get to where I am.
Take care,:hug::hug:
Sherrie

We are all diffrent.. and deal with our pain diffrently.
 

I get pretty sick on most narcotics so I take alot of diffrent meds that treat each symptom individualy, I also get lidocaine infusions every 3-4 weeks.
I also take atavan ocasionaly and probibly too many ibiprophen for breakthrough pain as well as muscle relaxers.. but no narcotics, I feel for myself anyway that if I took narcotics for long periods (long enouph to get over the extreme nausia I get) that they could/would take away my bodys own ability to fight the pain naturaly.

A very good question by the way.
be well,
Sandra

Hi Dew,

For ME, NONE of the pain medications other than Ketamine helped and that was why I chose to come off them. I felt it wasn't worth being on them seeing as though they didn't work and they made me extremely drowsey and I had to deal with awful side effects from them.

Ketamine helps me a little but not as much as it used to do. My dr thinks I have built a tolerence to it and that is why it isn't working. I can take it 3 times a day but don't as my dr was scared that it could affect my hormones etc.

Everyone is different when it comes to dealing with RSD. Meds work for some people whilst for others like me, they don't work at all and that is why they choose to come off them. If the meds are working then that is great but I really dont see the point in being on a med if it doesn't do a thing for you.

I must say that 21 meds seems like a lot to take on a daily basis!! I know many people with RSD have to take lots of meds but usually not that many!! I was on about 8 different meds a day and my dr wouldn't put me on any more as he thought it would make me worse. I'm glad that they are helping you though.

Take care of yourself

I am not on any meds soley for my RSD/CRPS. Some of the meds I am on do help the RSD/CRPS. For instance, I am on Neurontin for my seizures and Elavil for nerve pain, both of which also can help RSD/CRPS.

My RSD/CRPS is treated in a variety of ways-- Botox, and other interventional/procedure type things. Plus massage, TENS unit, light excersice etc.

Each of us has to find what works for us and each dr will have their own ideas as well. My "course of treatment" has changed an evolved several times when my diagnosis has and when I've changed doctors.

Good Luck and hang in there !
L2L

Apology to Fewdalord
 

Fewdalord, I know you started this Post as to find out who DID NOT take pain meds. Unfortunately, it seems, alot of us do. I wish I didn't have to.

In 2001 the dr's had me on so many meds, I was in a completely different world and it was unnecessary. I had to go to Columbia Presb in NYC for 2 weeks to get completely taken off all meds. It wan't tough. They give you methadone to help. Actually, it was depressing being away from my family.

Meds are not always the answer and I pray that most of us can find a way to do without. Unfortunately, for some of us, me inparticular, I could not survive a day without. I could not get out of bed and get my children ready for school. I could not go to my office (part time, I am the owner) or make dinner. Laundry. Basics. There are mornings that the meds don't work and I stand in the shower and cry. Hoping no one will hear. I figure that's the best place, the water hides the sound. The car's a good place too.

My husband doesn't understand. He doesn't believe I'm in that much pain. But, then again, he doesn't come to the doctor's with me and hear what they say, my mother does.

Any way, I hope you find a way to get by without, but, if not, don't kick yourself. Life is very short and who wants to live in pain.

Best of luck, Linda

I am unable to take ANY pain medications..
 

I haven't taken ANY pain medications for several years...

I found out through trial and error that I am severely allergic to every narcotic pain medication out there... My throat swelled shut and my breathing became extremely shallow with each drug we tried.

How do I deal with the pain that is a constant 9 - 10 level for me??? I am unable to do many things... I often pass out because of the pain... I do take Lyrica, Cymbalta, Baclofen... basically treat the symptoms. It takes a very small edge off of the overall RSD pain picture.

I wish there was a pain medication that I could take that didn't fall under the opiod/narcotic pain killer catagory.... I'm tired of hurting...

:(
Abbie

WOW - Have you booked an appt. with any of the docs (Schwartzman or Kirkpatrick) that are known for their work with ketamine? Do you know if you can tolerate lidocaine? Schwartzman has also done some studies on that at Drexel in Philly.

I understand that these drugs are becoming more available at other medical centers. For instance, ketamine is available at the Beth Israel in Boston (if your insurance will allow, I'm trying for approval, but so far haven't gotten it from WC).

So sorry for your pain - I am actually humbled by it, because I know what a mess I was for the few months that I suffered with inadequate meds. You are awesome.

Sandy

None of the pain meds really work for me. Morphine comes closest but it took four shots of it just to get me to quit screaming. Methadone is extremely interesting since it does make me care a little less about the pain and then it acts like an analgesic the day after I take it! I enjoy it so I'm afraid of it and this goes double since it doesn't really work. Nothing else has any effect on my hand except (thank god) I get a little relief from tramadol in high doses. I'm afraid if I use it a lot it will lose its effectiveness so only use it for flares. Tylenol 3 is very helpful for easing other pain and helping me get to sleep. I have a brief and narrow window of opportunity to get to sleep and the tylenol extends it.

I'm just afraid of the pain killers but will probably ask for them if it might be a last resort.

The most effective pain relief for me is distraction.

Hi Sandy... yes, we (my doctor and I) have contacted both Drs Schwartzman and Kirkpatrick... unfortunately due to my severe allergic reactions... ketamine has also been ruled out by both doctors.

I can not tolerate lidocaine.... never have been able to... it makes me very very sick.. I swell up and vomit severely.

:o

Abbie, I would recommend talking to your doctor about suboxone. I dont know how much you will find researching it its very new to be used as pain treatment. But I dont believe its a narcotic. It might be something you could take that will help you. I really hope it is. How awful that you live daily in such horrible pain.
Hugs, Denny

Hi Denny!

Thank you for the recommendation!

However, Suboxone is a combination of Buprenorphine and Naloxone ---A narcotic analgesic combination - treats Opiate Dependence .
http://www.healthline.com/multumcont...ne-naloxone%29

I don't think I will be trying this one... don't want to risk another severe reaction. I guess I have to keep on searching....

:hug:
Abbie

Abbie
 

I am so sorry for your horrible reactions to these medications. I feel like a little child complaining about a bee sting when you have pain that is unable to be relieved. I am sorry. Unfortuanately we are all different. But, to be unable to get pain relief is beyond my comprehension. I know I can only take so many pills, or do so much, but, to not have ANY relief is hard to swallow. I have tried accupuncture, PT, biofeedback, etc. The idea that you are in such bad pain all the time really bothers me. I hope you can find something that helps. Linda

I am sorry too for others who have not found better relief. I don't take narcotic on a regular basis. I did have to go back for a few days to them after my nerve block flare up and that was vicodin and darvocet but on a regular basis I don't. When this started 2 years ago I took vicodin every few hours and was crying through pain still. My doctors feel that for me it is not the way to go long term. The past few months though like I said when I am in crying pain I will take darvocet or vicodin. I often wonder if I were to take these things now since I am in a better place then when this started but still am very limited and have many days of crying pain if I would have better quality of life. I am not sure since invasive treatments are not working with me so well. I am back on neurontin,serequal,klonopin,and cymbalta. I have tried these types of meds too in the past with out relief
Abbi what about treatments like a scs or a pain pump though I am not sure if that would be the same thing with med reactions.

Pain Meds
 

I am unable to have a SCS as a doctor tried an external nerve stimulator and it made my RSD worse... EXTREMELY WORSE!!! This was supposed to block pain signals to my brain as an SCS does but it didn't work.... My pain went from a 3 to a 10+ in less than 45 minutes with me wanting to cut my leg off. It also caused immediate spread from my foot up my leg to my torso in this short amount of time. After this I was and am still afraid to find out what the SCS might do to me... and the doctors agree.. this is not worth the risk.

As far as a pain pump... doctors have told me that this is not an option at this time as the medicines that are put into these are narcotic based meds.

I checked TALWIN NX... unfortunately it too is a narcotic analgesic... thank you for giving me the name of this medicine as I had never heard of it...

I havn't given up and I keep looking for new medicines that are not narcotic or opiod pain killers. I keep looking for anything to ease this pain... I have re-written what a 10 pain level means many MANY times.

I do take Lyrica, Cymbalta, Baclofen, Seroquel, Frova, and Xanax.... but these really do very little to ease the RSD pain.

I sincerely appreciate all of you!!! You are all wonderful!!!!
:hug::grouphug::hug:
Abbie

Meds for RSD
 

Narcotics are never going to help you with RSD pain. And I have had experience with the same methodone experience you describe... you just don't care as much about it, but it is still there. But living like a zombie is no way to live. You need to try different anti-seizure drugs - that will actually help the nerve pain. The one the worked best for me was zonegran. But it might take a while to find the right one and the right dose. If your RSD is very bad, you will need to work up slowly to a large anti-seisure med dose. Try to find one that doesn't have a ton of side effects, then go up on the dose gradually until it has the right effect. Make sure you are also seeing the right type of doctor that knows about RSD... a "pain specialist" they are usually called.

And you made the right call on the stimulator, although it sounds like just really bad programming.

Good luck.

Hi all!
I am an addict and hav been for, I believe, all my life and I loved to abuse pain meds. I am in recovery right now and I hav had this addiction for yrs b4 the RSD diagnosis. I only take lyrica and muscle relaxers currently and hope to never need pain killers.
I used to abuse pain meds for emotional pain and now actually need to take them for real pain and i can't!
I was diagnosed last fall and my pain is usually around a 5.
I don'tt even want to think about what will happen wen the pain worstens...
Sarah

What does your PM doc say? My understanding is that when you use narcotics for RSD pain your body is processing them in a different way than it does when you take them to get high. I'm in no way an expert, though.

Congrats on beating your addiction. What an awesome accomplishment. And perhaps you shouldn't think about what is going to happen when the pain worsens - treat this like you did your recovery - ONE DAY AT A TIME.

XOXOXO Sandy

welcome to the forum
 

You have received excellent advice. I am sorry that you have entered the RSD/CRPS zone.

You will feel very welcome here. I believe that a positive attitude helps from the onset of RSD. Take each day at a time, and educate yourself with the informative posts in the forum.

Please don't hesitate to reach out should you want to chat. I am Dew, and it is nice to meet you:)

I have actually tried the no pain medication route. It did not work for me. My pain was out of control. I was down the entire time. It was a very bad experience. In the last 5 monthes I have tried several types of pain meds & in the last 3 years since i was diagnosed. My doctor finally came to the conclusion the only pain medications that I tolerate are the synthetics like fentanyl & dilaudid. The others either dont work or I have bad side effects. We determined years ago my liver does not process medications like a normal person. There are many medications I have tried over the years I have not been able to take. But the thing is sometimes you just have to figure out what works for you & it can be a painful trial & error process. The last 5 monthes for me have been hell. A lot of people swear by Methadone & I was excited to try it thinking it would work well for me. I might as well have been eating M & M's for all the good it did. Just because I am on pain meds I am not a zombie. I will admit they can make me tired. But not every day is bad & it depends how my pain level is & how I feel. There are other factors involoved. Some of the other meds I take can also cause fatigue. Its such a personal choice. Like I said I tried to go without narcotics just to see if they were really making any difference & found out the hard way just how much of a difference they were making. But I think it was worth knowing. Hope everyone has a low pain day.
Hugs, Denny

Been on both sides
 

When I was originally diagnosed (Oct 08), I was started on Neurontin, then Lyrica, plus MSContin and MSIR for breakthrough. However, my big priority was to return to work. I am a nurse, so working and being on any narcotic pain medication is a no-no. Because of this, I shook the morphine cold turkey after a couple of months for several reasons. My mother was afraid that I was addicted or would be (I am honest enough to say that I don't think I was, and while I did withdraw I do not crave any more, but it's hard to judge 'cause I certainly wasn't "myself"). Also, I felt like I was losing my life. I didn't want to eat, shower, get dressed, leave the house, and lost interest in my family. I just slept and breathed. I had been on antidepressants beforehand, but increased the dosage. So, I went off the morphine. I am still on the Lyrica and use a TENS unit for work. I also take Klonopin at night only to get me to sleep when that nasty sensation of the sheets against my leg keeps me awake. The TENS unit is not working as I had hoped, so there is still pain. My doc wants me to stop using it and get a SCS because the stimulation on my skin is causing bleeding rashes and electrical burns due to having to use it at such a high voltage to get relief. I think that this is the way that I will go (luckily I work in neurosurgery, so I have access to people who are understanding and that I trust) once I am permitted by my employer to take a leave to get it. I'm scared to death, but I have to do something and I cannot go back to more pills. And, yes, sometimes it just plain hurts...some days all you can hope for is to get one foot in front of the other and keep at it. I think we all have days like that whether pain meds are involved or not.:)