Really.....you guys are the BEST. I think I would lose my mind for good (and not want to find it) were it not for this forum. Gymjunkie, you expressed my feelings verbatim. It is already tedious trying to explain this disease to everyone who treats me. I've only had it for 6 weeks. I had some basic brochures I had printed out from RSD.org that I would hand out to people. I found them describing the disease very vaguely....almost inoccuous sounding. I ran out and haven't printed more.

The last time I went to one of the hospitals for my injection, I had to fight with the nurse to understand WHY I needed a numbing med before my IV. "I AM NOT A WIMP, I said.....this is about how my dysfunctional sympathetic nervous system perceives pain, I said......it's already spread to my right foot.......I do not want it in my arms/hand too. Look at my purple and blue feet. Would you???" I MADE them page the doc twice to approve it. I had already called his office the day before MAKING SURE it was available to me. Apparently, he didn't get the memo. AND (I may not have mentioned this) despite having an allergic reaction EVERY FREAKING TIME they've injected me before, they waited until AFTER my injection to give me the Benadryl. It only made the rash worse and itch like crazy. I even reminded them before my injection to give it to me BEFORE the injection. I don't know what they're putting in my IV and not. I assumed one of the meds was the Benadryl. Then, they only gave me half the dose until the doc was convinced the rash was, indeed, bad enough to warrant the full dose. I didn't know THAT until they had let me suffer and itch for 15 minutes, wondering to myself why the Benadryl wasn't working this time. $^%$ idiots.

I do NOT want to be bitter and angry. I would LIKE to suffer with this wretched disease with grace. I would LIKE to be treated with respect and compassion by the medical profession. I would LIKE to be able to support and help other people suffering from this and be an advocate for us.......ESPECIALLY since I still have my mobility right now.

So, thank you all for your support and advice. I allowed myself to be put on the Lyrica thinking I would attack this from the medicinal perspective as well. I've had such a bad reaction to it, as I do MOST meds they try me on (I always HAVE been super sensitive to them), that I feel stuck with just dealing with the pain.

So....that brings me to my next question (probably a separate post in itself).....is it bad for this disease to "suffer" with the pain if I can cope with it??? Will that make it worse??? or spread???? I don't have such severe symptoms MOST of the time, so I usually just take Advil and deal with it. Should I be trying to numb it all together to calm my SNS down??? I really HATE taking pain meds. They make me sick and constipated. I HATE them. BUT, if taking them around the clock for a few months might settle things down in my body, I'm willing to do it.

Oh, and I will mention the med you mentioned to my doc.......perhaps my psychiatrist on Friday (next week) as HE is nice and caring and takes the time to LISTEN to me (and NOT while searching ebay at the same time.....yes indeed.....my Pain doc looks at ebay up until the moment he's ready to give me the injection. I USED to think it was funny, until I realized I can't ask him legitimate questions about my condition because he won't look at me). #!$& !@@ holes!!!!!

Thanks to all!!!

Hi MominPain
I know that you aren't keen to take lots of drugs and you don't like the side effects - nobody does. However, if you want my honest opinion, it is not worth doing "suffering" and getting along with basic meds if taking stronger stuff is actually managing the pain properly. It depends on whether you are "suffering" the pain and getting by rather than properly managing and controlling it - only you can reflect on how you feel and answer that one.


I read your posts on the reaction you had to Lyrica - again, if I can be brutally honest, your reaction wasn't that bad!! I know it probably didn't feel like it to you but a bit of postural hypotension honestly isn't a big deal, its unlikely to do you any harm so long as you get up carefully and if I were you I would persevere for a few weeks at least to see if it passes. I am also very drug sensitive but often the side effects pass.

You need to dig deep and accept that none of the medication comes without side effects but a bit of experimentation, living with the side effects and patience can reap huge rewards. You will eventually know what balance between effectiveness and side effects is acceptable to you. However, I would really urge you not to give up too easily. I have been fortunate to get very good pain control but it has taken over a year. I have stability and what I regard as very good control in terms of the pain such that I am able to work, my mood is completely normal and I have a life and hobbies, albeit now as a wheelchair user.

My own personal view is that you should throw as much as you can at this in the early stages to try and get good pain control. If you read the clinical stuff on the physiology of emotion and pain it is pretty apparent that the more control you get over the pain, the better your emotional state will be. It gives you the best chance of restoring movement and normality. Cross the drug tolerance bridge if and when you come to it but what is the point in worrying about it now? It may not happen to you.

I have struggled with sickness from oral opiods but the patch based ones have been excellent - both buprenorphine and even better, my current one which is Fentanyl - I was given free rein by my GP with both drugs to increase/decrease the dose until I got a level that worked for me. A 50mcg/hr fentanyl patch does the trick and that dose has been working very well for me for a few months now. I also take a base of 4 grams of paracetamol per day plus Cymbalta which works very well for my neuro pain but only at the full 60mg dose (30mg did nothing). I take laxatives every day to deal with the constipation. I don't like it but its better than being in pain.

Nobody is a hero for suffering the pain. If the meds no longer work for you then that is different but you need to persevere with some of these drugs. My advice is be prepared to give them a bit of time, accept that you need to experiment and sometimes you also need to take additional drugs to combat the worst of the side effects.

Just my thoughts and I am sure not univerally accepted but pain management is very individual.

Hi MomInPain,

I agree with what GymJunkie said, if I was you, I would try some of the medications that the doctors offer to you to see if they work for you - if they don't, then I would come off them and then try something else. I know you hate taking the medications, I think everyone does but IF it stops you from being in so much pain and the benefits outweigh the side effects, then I would probably have to choose taking medications.

At the moment, I am not on ANY medications. Non of the meds have worked for me and I have tried all of them - the only one that offers me relief is Ketamine but I am only allowed to take it when the pain gets really bad as my doctor feels that it could affect my hormones due to my age. I've been told that my pain is Independently Maintained which means that it basically has a mind of it's own and the meds probably wont work in my case. The Doctors also believe that the RSD could have spread into my brain and Spinal Cord which is why nothing works for me.

For me, I feel better off the medications. The pain hasn't changed at all and is still between a 7 and 8 on a daily basis but I don't have to deal with some of the side-effects that the drugs have. I also don't feel as drowsey which means I am able to do more things when the pain isn't too bad.

Everyone is different though and I would really advice you to try most of the meds and then if they don't work for you, come off them. My Doctor told me to give the medications a month to work and then if they don't seem to be helping, to call him and he will tell me how to wean off them.

I know you hate taking medications, I did when I was taking them but IF they are helping you and the side-effects aren't too bad, I would take them as you don't deserve to be suffering in such bad pain! Please be prepared though to have an open mind and if one med doesn't work for you, ALWAYS be positive and think that the next one could work!! The way I saw it when non of the meds worked for me was that I was one step closer to finding the drug that would help reduce my symptoms!!

Take care of yourself and if you have any questions, please let me know. Please keep us updated when you can!!

I personally know a couple of people with the scs. I have heard from my pain management doctor who also teaches on the scs that it is often better to do early in treatment, but not always the case. One person who is a close friend had the scs put in about six months ago, and it has caused the spread, funny cause the trial she did wonderful with. I also know of someone else in a local support group who was wheel chair bound. Got the scs and is now able to walk. I personally would not get one, but then again my pain is almost non now. I could not take neurontin had a allergic reaction ended up in the er, so therefore will never try lyrica since its a sister drug. Keppra at first which is another med they use off label i used and it worked good. I hope you find what works for you.

Jolene

I hate having to take meds too, but you really, really shouldn't be just trying to deal with the pain. I believe the reason I had spread so fast was because wc wouldn't allow the docs to give me any pain meds. My pain raged out of control. When you let you pain rage on it affects the whole nervous system,sending pain signals to every nerve ending in your body, especially the "good" nerve endings. Your whole system gets the message that your whole body has suffered an injury, thus the more nerve endings affected, the more likely you are to start getting spread elsewhere.

By taking pain meds on a regular basis and keeping the pain under control, well as much as possible anyway, it gives your body a break and may indeed prevent spreading rsd quickly elsewhere in the body at the same time the existing pain keeps getting stronger and stronger.

As much as we hate to have to take any meds, I'd rather keep my nervous system as calm as I can to prevent more problems. It's hard when you feel icky too, but the way I help my body not feel so sick is by taking a half of a pill. I take vicodin 10mg. I'm able to take a whole pill when I first get up and make very sure that I eat something within an hour of taking it. This helps stop any sick feeling I might get. I try to make sure it's some kind of bread, like crackers if nothing else,lightly buttered toast, a sausage biscuit. This helps your stomach to "absorb" the med. Don't drink coffee until about an hour after you've taken your med because the caffeine interferes with absorption and will also make you feel icky. If you take vitamins, wait to take them until a couple of hours later so you get the full benefit of them. When you need to take another dose, break a pill in half. I take mine this way, 1 whole pill when I wake up, 3-4 hrs I take a half, 3-4 hrs,take a half,etc. Those days my pain is up a bit I may take a half 2 hours after but it jumps on top of the pain and I can wait another 3 hrs or so before taking another half.

It works for me and maybe it'll work for you too since we seem to have the same problem. To deal with the constipation aspect, make sure you get more fiber and also a stool softener.

Big Hugs,

Karen

You're such a sweetie!! I did not know all those tricks to taking the meds (why don't they put all that in the patient information insert???). I go in to see my Pain Doc tomorrow. I will mention all of this to him. I still have enough pain meds left over from my surgery with a refill, but if I start taking them regularly, I will run out quickly. I appreciate all your input and suggestions!! Thanks!!

*Big Hugs* They only think of the clinical aspects for meds but not the reality for those of us taking them. LOL Scientists....pfft *rolls eyes* All that is left to us to share with one another and find what works for us. Thank goodness for the internet huh?!! Let us know how it goes after the doc tomorrow if you feel up to it.

Hugs,

Karen

Hi,
I guess I'll throw in my 2 cents worth. and please keep in mind that it is all that it is worth. I'll give you a very brief history...I've had rsd for about 4-5 years, (i've lost track of time). started left foot. had about 8-9 surgeries. sometime during the surgeries rsd came up. I didn't want to hear it, I needed all the infections etc cleared up first. Finally had to agree to rsd. Started pain management. Was pretty well bed bound or in a wheelchair. Went to Georgetown University Hospital in Washington D.C. Saw head of PM dept. He agreed with other PM. Also agreed it was mirrored onto right foot and leg. said that I needed scs (in agreement with other pm). I agreed, had trial. Hurt like anything, after about 3 days in bed and pain I got up and was able to walk with just a cane. It was wonderful. I agreed to the perm unit. I had it implanted, did all that I was suppose to do during recovery and was doing pretty good. The only problem I had was the battery was in my butt. It was hurting quite a bit. after almost a year I need it moved as I couldn't sit, walk, etc. found a dr. here in town (closer, and he had been on the Oprah show), and he agreed to move battery. Turned out that the leads had moved and I needed a complete new unit. No problem. had surgery, 2 weeks later had about 80 staples removed from old surgery removal and new surgery implant, and about a week or so after that started to get very sick. lasted about a week and one night I started pouring pus out of my side where the battery was implanted. into ER. sick as anything. into emergency surgery, where the complete unit was removed again. I was about 24 to 36 hrs from dying from a merser infection. It had moved up my leads and was just at my spine. I ended up in a nursing home because my side had to be opened upand packed and unpacked a couple of times a day. also had a picc line and all this went on even when I went back home for a couple more months. I no longer have anything in me, and I'm back where I started. I also now have rsd in my butt (you know there is a really good joke there), and in my back from my shoulder blades down to where (well, guess). any way. that is my story. All that being said. I STILL would have tried it the first time. It was great for the first time. THe only reason I'm not doing it again is that I'm tired of recovering from surgery. My back, butt, and side looks so scared up. Like you, the meds make me really strange, but I'm willing to live with it if it means I can continue with my life. I have horses, and I'm planning to ride again this spring. I'll never win another show, but I will ride again. With the scs I would never be able to do that again. THe nice thing about the trial is that you can see if you like it. the scs can always be removed if you find out after a while that you can't stand it or if it isn't what you like. If you don't try it, you will live the rest of you life wondering if it could have helped you.

I hope that my story doesn't change your mind about trying it. Anyone going into the hospital could pick up Merser, it had nothing to do with the scs. It was just my luck.

hugs
Mary

Dear Lostmary,

You are an awesome inspiration to the rest of us. Thanks so much for sharing your story with the rest of us.

I sincerely hope that your incisions heal comfortably real soon and that you find relief from your pain.

Someday soon you will have to share pictures of your doxsies!

XOXOX Sandy

Well..My Pain Managment Doctor had me try the trial period of a scs after he was unsuccessful with doing 1 symphatic nerve block and several tunneled cathreter injections.My pain level has been at a 10 since I was diagnosed 7months ago so I thought why not give the scs a try. The scs didn't change my pain level much at all at most 20% so I wasen't sold on getting a permanent implant. He mentioned that it could help with the swelling I had, but didn't mention that it couldn't prevent it from spreading. Now that the scs trial was unsuccessful for me, my PM says that he has done all he can do to treat me that he knows of, so i'm not sure why that is. I always wonder if the doctors get commission for people choosing to have the permanent implant,because he was mentioning the scs to me since our first office visit. i'm still looking for a dr in the WNY (BUffalo) area if anyone knows of one.Good Luck all