My title sums it up - the SCS at this stage sounds way too early for me! Like ALI12 said "they only implant an SCS as a last resort" and this is no exception here. I am not sure that your insurance company would even allow for a trial, which in itself is expensive, with the limited treatments conducted so far. My wife too had the trial of the SCS and the PNS (periphrial nerve stim) both of which failed to improve her pain. With your pain thus far being managed by little medication I would think you had lots of other options to try before this one.

In answer to your question, however, I believe that if you control the pain and other symptoms, you will most likely stop the spread. Thus if the SCS was successful I believe that the spread would stop. Though there may be some disagreement, the continued damage to the nervous system and the spread of symptoms has to do with the continued wind-up response of the sympathetic nervous sytem, and when this wind-up is stopped through the use of SCS, HBOT or any method, the spread is less likely. I think this would be a good question for the general group as to whom, if their pain is well controlled by ANY means, ever had continued spread of their symptoms?

As for the deep gnawingache, that is exactly th words my wife used to describe her pain since it started back in 1993. It has never changed her primary description.

Keep all of your other options in mind and definitely GO CONSERVATIVE when you can - surgery has it's own risks of causing flares and spread as well.I would remain very hopeful of all of the things you could still try before getting to the SCS point, should you choose to. Best o luck!

Hi MominPain

I would agree with the other posters that this is all proceeding too fast. An SCS will do nothing to prevent spread - it merely substitutes a different sensation in place of pain. If your pain is currently managable then there is no reason for anyone to be recommending an SCS at this stage.

It is an invasive surgery which carries the risk of CRPS occuring at the site of the incision. It has a long and very limiting recovery period where no bending stretching or twisting is allowed so that the SCS unit is properly covered with scar tissue. Then there is a high risk of complications - leads moving, infection etc.

Why would you want to go down this route when you are able to manage your pain with over the counter pain meds? Why would any responsible pain specialist suggest it when he/she is aware that you can manage your pain with over the counter meds? There are a raft of other prescription medications and other non-medical pain management techniques that you would work through before considering an SCS.

The deep aching pain is a feature of CRPS for many people. I have had deep aching pain from day one. You should make sure that your doc is satisfied that it is a feature of your CRPS and it is not being caused by something unrelated though.

Hi all,
Reed's SCS was implanted about 6 months after he was diagnosed and began treatment for RSD. It has helped tremendously with pain.. he can walk now with a limp, compared to walking only with crutches before. However, I will say MominPain, if you can manage your pain, you should really think long and hard about it. The restrictions with SCS don't necessarily end when your recovery period is over. There are life long restrictions, and to be honest, there are times when Reed has said he would almost rather deal with the pain and be able to bend and stretch again. His leads are floating, no paddles, so he can never again do things that can pull them and move them. It's alot to consider, and much research and thought should be put into it. Good luck!

I agree......I have no intention of letting them put a SCS in me. I guess my biggest question was whether it was a "preventative" measure as opposed to a "maintenance" measure. I've done a lot of research on the internet since posting this. I do NOT want it unless it becomes absolutely necessary. I have no idea why he mentioned it???

Basically NO ONE around where I live understands this disease or has even heard of it (or few have). I educate more nurses in the Pain Centers of the two hospitals here. Yesterday, I had the opportunity to educate an ER doc (and showed him my "trick" of being able to turn blue and purple and red by simply letting my feet dangle). I am so frustrated and depressed at this point.

Clearly, the injections are NOT working. I had a fever when I went for my injection yesterday. I had to tell them "No, this is a symptom of my SNS acting up......I am not sick".......my blood pressure is all over the map......they are trying random meds on me to see what will help.....I am not sleeping......my right arm is like a bruised pin cushion from all the IV's in it.......I am NOT happy about ANY of this. I wish they would just put me in a coma and wake me up when there is a cure. I'm tired of twitching all over.....I'm tired of the invisible man stabbing my ankle, the beast gnawing at my legs, and my foot stuck in invisible ice all the time.

Here I am trying to "deal" with the pain only with Advil and my Pain Doc scolded me yesterday for taking Vicodin before and after my injections (as they've instructed me NOT to take Advil 24 hours before or after) and telling me he wouldn't call me in more pain meds if I ran out early. I was lying on the table on my stomach.....they had already given me a sedative and I said, "But YOU haven't even called me any in......(I DECLINED their offer to call me meds in a few weeks back).....these are still left over from my surgery.......I still have a refill left......I take 2-3 Vicodin a day when I can't take Advil........I AM NOT A DRUG SEEKER". Screw him. I was up ****** off about it all night long.....why I couldn't sleep. Disclaimer: I am NOT judging ANY of you who NEED more pain meds than that. I really am able to manage it with Advil RIGHT NOW. I KNOW how painful this wretched disease is. Right after my surgery, when I was elevating/icing it, I was taking 8-10 Vicodin a day, easily. It has calmed down since then in me (and since I quit doing all icing and stuff) and the pain comes and goes (like contractions). If it was with me all the time, I wouldn't be able to manage it.

Sorry I am discouraged.....my poor hubby just got an earful of all of this over coffee.......I had nowhere else to go but the forum!! I hope I snap out of this soon. I feel like I'm heading for a serious depression.

I appreciate all your responses. I will NOT be getting a SCS......maybe some new doctors in a different town instead......take care all!!

Sorry you are having such a hard time of it. It is really amazing that more doctors and physical therapists don't know what RSD is. It just stinks - if the supposed "best" practictioners in RI had identified my problems sooner I wouldn't be where I am now. I bet that is true for many of us.

Maybe you could just take a nice hot bath tonight, sip your favorite adult beverage, chill with a good book or your favorite TV show, and go to bed early. Can your GP write you a script for some Ambien? I take that nightly to get some sleep, our limbic systems are a mess and it wreaks havoc on our ability to sleep.

Got to go, I sincerely hope you feel better soon, Sandy

Hi MominPain

You sound a bit furious!! If I can be so bold, if I were you, I'd honestly try and find a way to deal with the frustration of having to explain CRPS to every PT, OT and doctor you come accross. Sadly, this is normal and you will have to do a serious amount more of it before you are through. I know it is frustrating - I have been doing it for a year now and it is beyond tedious. However, that is the harsh reality of having this condition - nobody has heard of it, nobody knows anything about it and you get utterly fed up feeling that you are the only knowledgable and sane voice out there.

It used to make me really angry until I learned to accept that its just how it is. The anger was making me feel worse (and it was only me feeling worse - the nurses and docs just walk off oblivious since you are only one of umpteen patients they will see). It is a waste of your precious energy and resources to keep getting angry and frustrated about something that you can't influence. Once you give in to it a bit and grudgingly accept this as a fact, you will feel much better - I promise! I am not saying that its right but you need to invest your energy in yourself.

Try not to get too down about the blocks apparently giving you no demonstrable therapeutic effect. It is very easy (I know because I've been there) to build up all of your hopes for the next procedure or med or specialist visit. You hope that this will be the one that works, that you will be cured of this awful thing, that you will meet a doc who "cares" and can fix things for you. Eventually after weeks or months of this you realise that whilst it is important to be positive about all of these things, you can't build up all your hopes before each appointment just to have them dashed. Again. it uses up too much emotional energy and makes the pain and your mood worse. You need to find a way to go into all of these visits with an optimistic but realistic attitude to save yourself the rollercoaster effect.

One thing I would say too is that you may be better to have a more hard-hitting package of meds at least in the short term until you come to terms with the diagnosis and things settle a bit. I am not advocating taking medication for the sake of it but anti-convulsants, anti-depressants and strong opiods are used for treating neuropathic pain because they really can work!

You may find that something stronger will actually manage the pain for you better than your current regime. To a large extent if you can stop chronic pain from getting worse by blasting it with meds that work for you and by ensuring that your mood is OK then you have a better chance of preventing it all spiraling downwards and becoming worse. Like you, my pain has never been constant - it came and went every day and it has also changed in nature over the last 17 months. I have found a set of meds that work for me. Getting better relief from the pain helps improve your mood which helps the pain in an upwards and positive cycle. Don't wait until you are depressed and the pain is getting worse before you seek help - then you really will seem like a desperate drug seeker!!!

I don't know if I said before but there is evidence that alpha-blocking drugs can be effective for dealing with the colour and temperature changes in CRPS because they dilate the blood vessels. I was prescribed alfuzosin (brand name Xatral) which is licensed for treating benign prostate enlargement (in men obviously). It verged on amazing for me - the temperature increased and the colour changes became less dramatic. The vascular changes can become irreversible so it really is worth pushing to try a drug like this. In the short term it increased the swelling and my leg felt unbearably hot but that settled in a few days and I have had no other apparent side effects from it. Its worth looking into this aspect.

I know this is long but I hope that the info helps.

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.

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