Hi Bronco,

You might want them to consider a med change. Look at the side effects for cymbalta as well. I have not taken this medication. Hang in their. Huge Hugs, Roz

http://www.yourlawyer.com/topics/overview/cymbalta

Dana,
I had to do some looking up, as you had a couple of meds that I didn't recognize. I didn't know what Avinza was....but now I do.

If your pain isn't being controlled well enough, you might need to talk to your doc about either changing your dosage of the Avinza and/or Norco (which I am assuming is your Breakthrough/Rescue Med, since the Avinza is a once a day and only once a day type of thing...right?)....or maybe changing from a morphine type med to a different kind all together. This med/med combo has worked for you in the past...right? If it has, then it is probably just that you are starting to build up a bit of a tollerance to it, and need things "tweaked" a bit. Talk to your doc! (And DO NOT let them tell you all of that bunk about never needing pain meds again after the SCS stuff. But, I will get to that later...promise).

The med that is looking pretty gnarly to me right now is the Lyrica. Man....that is some pretty serious stuff. It always amazes me that the docs and what not will put all of the warnings and stuff, and make these HUGE big deals about the "Level III" Narcotics, but let stuff like that Lyrica (and a few others that I can think of) be written so easily and in place of some pain meds, and that they can have refills and even be sent by mail or over the phone to pharmacies. So far, what I have read about Lyrica on the RxList site (It is my favorite site for looking med info. www.rxlist.com if you ever want to go and check it out, or need to look up anything), they dance all around the word "Depression". They list "Suicide Attempts" and even "Suicide" as "Adverse Events Observed" during the clinical trials, but never said one word about DEPRESSION. JEEZ.....don't ya kinda sorta have to be DEPRESSED to be thinking about Suicide, let alone attempt it? Sheesh...

Another thing that is kinda standing out to me.....this looks like it is a med that is related to Neurontin. Like Neurontin, the info says that it doesn't have any adverse reactions with other medications. But....when reading the info about your Anvinza...it said to be careful when taking meds that worked on the CNS, which Lyrica does. So, just keep that in mind, ok? That this med works on your Central Nervous System....and is something that is a pretty strong med, and very well could cause some problems. Neurontin didn't help with my burning type pain (which is the Neuropathic Pain), but it did mess my world up. Caused me to be depressed, and STUPID. I am not kidding about the Stupid part, either. This was beyond just forgetting what I was saying in the middle of a sentence, or what word I was wanting to use.....this was ...well...just awful. I felt "Zoned Out" all of the time.

Your Cymbalta is pretty interesting too. I think that your doc probably has you on it for a couple of reasons; 1) to treat depression, because it comes with any chronic pain condidtion...and (2) because it seems that Cymbalta is supposed to help with Neuropathic Pain also. There are other anti depressants out there that do the same thing...Elavil (amitripiline ..and I think that I spelled that all kinds of wrong. LOL) is one that I took, and had some success with at the beginning, but that stopped working for me. Actually, I took it strictly to help with the pain, but am sure that I got a little added help with the depression stuff too. It just stopped working so well for me...so I stopped taking it. My brother, however, has Neuropathic Pain in his legs (not from RSD, but for a totally different reason), AND is/was severely depressed. The Elavil is his "Miracle Drug" that has literally saved his life. Not only did it help with his leg pain, which is what it was originally intended for...but it has made a HUGE difference with his Depression, and saved his life because of that. Like I said....everything works differently for everyone, and what doesn't work for one, might wind up being another's Miracle Med. Even among members of the same family.

But, What I find pretty interesting about your Cymbalta is that there isn't much info for the docs to go on "long term", which in the case of Depression is over 9 weeks, and in the case of Neuropathic Pain is 12 weeks (although there was an "open lable safety study" conducted for one year). So, they can't say and don't know how well this med will work for ANYONE long term. Or, how long it usually works, or what happens when it starts to stop working....and all kinds of stuff like that. That is just because it is so new. I am sure that the medical community has a little better access to information then we in the general public do....but still.

Do you know if this is meant to mainly treat your Depression? If it is....then it might not be working. Here is what RxList says ...

Quote:

Major Depressive Disorder It is generally agreed that acute episodes of major depression require several months or longer of sustained pharmacologic therapy. There is insufficient evidence available to answer the question of how long a patient should continue to be treated with Cymbalta. Patients should be periodically reassessed to determine the need for maintenance treatment and the appropriate dose for such treatment.

It sounds to me like your Cymbalta might not be working right for you. I don't know, because I am not a doc, and I have absolutely no experience with that med. But, YOU know that you are depressed, and if you sit and think, you know how long it has been creeping up on you, or if it ever even let you out of it's clutches in the first place. HAS this med worked for you? If so..for how long? What do YOU think about it? If you think that it isn't working, talk to your doc about it, and what, if anything, can or needs to be done.

The flexeril is just a muscle relaxer. I took that way back when. It didn't work well for me, but I know that there are others around here that take it and that it works for. If it helps with your spasms and relieves some of the pain from them...then good! If not....again, you have to think and try to figure out if it has been doing it's job for you, or if not, when it stopped or started slacking off. I went through....oh...I don't know.....several muscle relaxers, before I found one that seems to work very well for me, and keep ON working for me. I know one of the others that I tried that worked for a bit was Robaxin. What I currently take is Zanaflex.

The Celebrex is an anti inflammatory medication. Be careful with it, because of stomach issues. It is an NSAID, so you have to just be aware of the things that NSAIDS can cause, and keep an eye out for them. It shouldn't be causing you any troubles with any of your other meds, though. You also should be eating more...and with more than just a couple of the meds that you are taking. ESPECIALLY with this med, and the Norco...and the Avinza, and the Flexeril. I wanted to ask...why aren't you eating but once a day? Is there are particular reason? Are you purposfully doing that, or are you unable to eat? This is something that you should ALSO bring to your Doc's attention.

One word of advice; if you decide that you want to talk to your doc about "tweaking" any of the meds in your current list, or even changing any of them....don't do a bunch of changing all at once. Doing that makes it very hard to figure out what might be causing problems, or working, or not working or whatever. If you start a new med, or even a couple of new meds, and change the dosage of another, and drop one or two, you have NO idea what is working, what isn't, and what might be causing some werido problems. So, any med changes are best done one at a time, to see what works and how. If that makes any sense? Of course, this is only if you have sat back and decided that you need to talk to your doc about any of your meds. DO NOT EVER try to change your meds on your own!!! That is NOT a good idea, and can be very dangerous. ALWAYS talk with your doc about things that are concerning you. This is why it is SOOO important to be able to have a good relationship with your doc, and to know that he/she will actually listen to you and your concerns and opinions.

Ok. About the SCS stuff, real quick, because I know that this has gotten super long again.

I am VERY relieved that you are going in for the Trial. Try not to worry too much about this, which I know is much easier said than done...especially by someone who has already been through it. The trial SCS isn't all that invasive of a thing. NOT like the Permanent Implantation Surgery. Basically, what they did to me for my Trial implant was to make a teeny tiny incision down in my lower back (I am assuming they will be doing this in the same place for you, since the SCS is probably going to be dealing with your lower body problems). Seriously tiny. I am talking: ___ that big. Honestly. They put the lead up through that little place, and try to get it placed "just right" so that the stim (stimulation...it is much easier to type "Stim") covers the area(s) that it needs to. You will be "awake" for this...but you won't really care. They will sedate you enough that you really won't care...and they will have to call your name (probably a few times...at least they did me! LOL) to get your attention when they need to talk to you and have you answer questions. Those questions will be along the lines of "What do you feel?" "Can you feel this?" "Where do you feel the coverage/stim?" "How far down do you feel the stim/does the coverage go?" those kinds of things. You will be on your tummy through this whole thing.

When he gets done, you will have a little X suture place holding the leads in the little incision that they made. You CAN NOT bend, twist, turn, DRIVE, er.....anything else that will/can cause the leads to move, as they are not anchored in place. If they move, the trial will be all for naught, as you won't know if it works to help cover your pain, or how much it would do so. So..be sure to do NOT do any of those things, and anything else that you doc says not to do.

You will have the power source hooked up and hanging outside of you. You can turn the stim up and down, or even on and off with this. With the Perm implant, this will probably be implanted (although there are external ones for that too. Mine was internal. I didn't like all of those wires hanging about during my trial). Be careful with that, too. Just keep it tucked into your sweat pants, or whatever you will be wearing to keep all of the parts away and out of harms way. You will find that the stim is VERY positional. You will have to find what works best for you with it; what settings, and even when to have it on. For the perm one, you will have to figure those things out all over again, as things will be a little different. It will still be some what positional, but not quite as much. You will figure this out, and what I am talking about here better, once you are actually doing it.

Your doc will or should have already, told you how long your trial will be. Once it is over, you will have the leads removed. They did mine in the docs office. They just ZOOPED it right on out. Pretty cool, and didn't hurt at all. That was it....my trial was over. It had been a WONDERFUL experience, with my pain levels dropping greatly! I couldn't wait to have my perm one implanted! But, for some reason, they make us wait for a while between trial and perm. Like we need to be reminded how bad we hurt without the stim or something.

However...IF your trial is NOT working well for you, or if it is causing you MORE pain and/or discomfort, be SURE to call your doc's office and let them know! This does sometimes happen. Hopefully it won't happen to you. But if it does...don't feel like a failure, or an "odd ball" or anything like that. This is the whole reason for having a "Trial" in the first place, because not everyone needs to have an SCS implanted in their bodies, and they need to find that out BEFORE They do the bigger implantation surgery.

A Good or Successful result from a Trail SCS is something like at least a %50 reduction in pain levels. At least, I think that is what it was when I had it done....I don't know if they have changed that since. I had that, and more for my trial. But....like I said about the med thing way back at the beginning of this monster post here....even with %50 reduction in pain, it is possible that a patient could still need some sort of pain and other meds to help them treat their RSD. I get really upset when I hear about the docs that seem to try to wash their hands of folks after the surgery, saying things like "You shouldn't NEED any meds anymore, you have had the SCS implanted!" like it is a cure or something. It is not. It is a bandaid, at best. And, you can have wonderful results with the trial, and not so good ones with the perm implant.

LOL..sometimes I think that it isn't only us patients that should be required to take the psych tests before having SCS surgery...but also the docs, because it seems that lots of them also have some "Unrealistic Expectations" about what this surgery is supposed to do (and I have come across more than just a couple that have been....well.....how to say this nicely? FREAKO! ROFLAMO!!)

Ok....I hope that I covered everything that you needed? I am sorry that this wound up being so very long again. If I didn't help, or I missed something...or you need some more help, or have other questions you want/need answered...or just even need someone to blabber too, just let me know! I am here, Ok? I hope that you are feeling a bit better, and a little calmer, and less alone and like no one is listening to you? I SOOOO remember how that felt. I also know that if it wasn't for the folks on this board throwing me a life line and listening to me and talking to me.....I don't know where I would be now. It scares me to think about it, actually. You just need to know that YOU aren't alone....and there ARE folks that are listening and that even understand where you are coming from and what you are going through and dealing with! Give a holler if you need to....and let me know how you are doing, ok?


Jose

PS...I thought of something that I wanted to ask you..but forgot to. I am sorry that this post just seems to grow and grow. But...Have you had any LSB's done? You are within the time window that you should be trying those. I will tell you what I know was one of the things that saved my arm/wrist/hand from getting any worse then it has from the spread that I have had up there; I had an SGB done within 5 days of the injury. My doc didn't fool around and tell me things like "You have had RSD too long, it wouldn't do any good to try" or anything like that. One reason for that, is because even after having this crap for 10 years, I STILL go and have blocks done every couple/few months to help calm things down. There are other things that I do too...but I have done and tried so many things, that I am running out of options, and what are good options for me, aren't such good ones for you at this time. But Blocks? HECK YEAH! You need to get this thing calmed down...especially if you think that it is trying to spread upwards. Blocks will not work %100, as they are not a cure. They will not work for a long time, either. I think that is why lots of folks stop getting them, because they say "Oh. I had those done, but they only helped for a little bit....so they didn't work.....and I want something that works and takes ALL the pain away!!!" The trick to dealing with this disease is to not try to get rid of all of the pain (at least not until they find a cure...which I hope and pray for every single day of my life...I don't want to sound otherwise here), but to try to achieve pain levels that you can still do stuff with. I myself can not work. But, I have raised two kids on my own.....and done so dealing with pain every single day for many years now. There are things that I can't do...but there are things that I CAN. I wish that I could find "The Spoon Theory" post that we had on the old site, because that REALLY helped me a lot. Maybe someone will see this, and has that, and will post it again? Anyway....try to not look for things that are going to make you "Pain Free", because that isn't going to happen right now. Just try to get your pain levels down low enough to where you can tolerate them. If that makes any sense? And....Let me know about the Blocks, Ok? If you have had them...and what happened....and if you haven't, why. And why not after this latest thing with the upper body problems. OK?

OK..NOW I am done. PROMISE! LOL

Jose

Jose,

I am so jealous of your long posts. Due to right upper involvement my typing is so limited. You are such a joy here, I love your posts. Love, Roz

This what you were looking for?
all the best

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

Please don't give up. I believe you and I believe in you. I wanted to give up last night and I thought I would wait and see what tomorrow brings. Ends up it brought me you guys, people who REALLY understand.

Hang in there.

Lisa

Artist. I want to thank you for sharing your spoons. I cried out loud and for once in a long time, it wasn't because I was in pain. You're good.

Lisa

glad to hear you stuck around too Lisa.

Keep hassling the docs about finding the best med combo for each of you.
Or blocks, or alternative therapies {don't forget about emotional side of it- mental, hypnosis, those sorts of therapies too}
or nutritional/vitamins/supplements etc.

Thanks Lisa - I didn't write that, though I wish I had, it was posted on the net a few years ago, Jose mentioned it and I happened to still have it. It's posted on that website mentioned at the bottom too.

It *is* a very good way of looking at life with a disability, certainly gets the message across

Bronco4586 - I do hope you're feeling a little better today and that Jose's words have helped. We don't call her Joselita the Wise for nothing!

all the best!

Hi,
I agree with the med review idea. The docs are the inadequate ones - NOT YOU.

I quickly form a really strange frame of mind when I take meds in the Gabapentin group. This week I tried Lyrica (son of Gabapentin) for the first time and only got to 75 mg x1 @ night - it really affects my frame of mind.

I know it is helpful for some with neuropathic pain but I noticed with 4 days of Lyrica (the only change we made to the many meds I take) I undergo a total change in personality & my CRPS changes for the worse. It had exactly the same horrid affect on me as Gabapentin did.

I previously had no side effects evident from the other meds I take until the Lyrica was trialled.
We are certain it isn't an interaction - it just doesn't like me. Gabapentin was my only med when it sent me into "strange mode". Lyrica triggered Indescribable thoughts despite:

THIS WEEK: Finding a new pain specialist who will work with me & who is knowledgable re CRPS understands my situation and who is prepared to correct the errors of my last pain specialist. So I have a plan that is flexible and is supported by all of my research since I was diagnosed with CRPS. I had a lot to be positive about. I couldn't be while trialling Lyrica.

Even with the hope of a logical treatment plan to correct the errors that had been made by the brick-wall pain doctor I had before I have a forward outlook as does my new doctor but not while taking Lyrica.

I had a forward outlook with logic and a new pain doctor who cares but I felt like crap. The only change was a trial of Lyrica. As it is approaching its half-life and coming out of my system I am feeling that feeling of hope again.

It MIGHT be that med - it might not.

None of us are in calm waters but this forum is the best for vast experiences and support.

Don't give up mate. We believe you.

Auberon

Dana,
Your spread sounds horrible. Reminds me of how I felt with mine. Have you tried soaking in Epsom salts? It gave me some relief & any relief at that time was much needed. I put a cup or two in the bathtub & filled it with as hot of water as possible. Know the feeling - been there. We just have to hang in there -
Linmarie