[fewdalord]

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

[dreambeliever128]

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

[SBOWLING]

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

[ali12]

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.

[Dew58]

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.



How Is It Possible Not To Take Medications With RSD?

I wish I did not have to take any medication.

[LinJane]

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

[Mslday]

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

[SBOWLING]

Originally Posted by Dew58

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.



How Is It Possible Not To Take Medications With RSD?

I wish I did not have to take any medication.

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,
Sherrie

[Sandel]

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

[ali12]

Originally Posted by Dew58

How Is It Possible Not To Take Medications With RSD?

I wish I did not have to take any medication.

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