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Joselita · 05-24-2007, 01:32 AM

Dana,
I am sorry that you are having such a hard time of it right now. Going through spread sucks, and is super scary all by it's self. Add to that the thought of some kind of surgery where they are talking about sticking this weird thing into you, and hooking it up close to your spine so that it affects the nerves coming out by zapping them with electricity....and ANYONE would be freaking out and scared sh*tless! I know I was.

In fact...when all of this stuff with RSD first started for me, I was so very knowledgeable about it all, that I remember calling my Mom on the phone and crying to her in a panicky, depressed freak out saying "I don't know what is wrong, Mom! They are saying that I have some kind of ‘Rotten Nerve Disease' or something!" I couldn't imagine having to live my life in the kind of pain that was going on......and with all of the crap I was getting from doctors (who seemed to only keep making things worse with every new procedureand surgery that they tried on me).....for forever and ever, only changing to get worse. THAT is what I was being told. THAT is what I believed. THAT is what almost led me to end everything.

So, I do understand what you are going through...at least a little bit.

Hard as it is, you have to try to look at things a little differently. First....who, exactly, is it that isn't believing you? It must not be your docs, otherwise you wouldn't even be a candidate for SCS (which by the way, I am hoping that you are talking about going in to have the Trial SCS done? Or, that you have already gone through the trial and had a successful outcome? If you have not, or you have no clue what I am talking about with this "trial" stuff...PLEASE say something, and STALL the procedure. I will be more than happy to answer any questions you have about any of this. I did have an SCS implanted, so I can help a little with that too. Ok?). Unless your doc is giving you crap about not believing that your RSD has spread from one leg to the other? That type of spread is called "mirroring", and if he doesn't know about that....well, I myself would start looking for a different doc (again...PLEASE let me know about the Trial SCS thing..OK? This is VERY important...and I am kind of worried).

If you are having trouble with family and friends believing you....the sad thing is that happens to most of us. If this is part of the problem, have you tried giving them some information about RSD? Printing out some things from the RSDSA website, or from the RSDHope Website to give to them to help them understand better? RSDSA also has a newsletter that you can have mailed to your house, that you might consider joining up with to get some info in and sitting around the house for folks to read. If your doc(s) aren't giving you crap and are kind and compassionate and DO believe you about your pain and your RSD spread (which they should...again, if they don't, find new ones), have family members and friends take you or come with you to the docs and sit in there to listen (not all at once, as the doc probably wouldn't like that much at all.

LOL. One at a time, on different visits...Lord knows we all have enough doc visits to go around several times over...and over again!

LOL).

I can tell you that RSD Pain levels do increase and decrease depending on the weather. You have probably read lots of folks here saying that the Cold causes them lots of pain, and that they were looking forward to the warmer months. And, you have probably read the opposite here too, from folks who say that Heat is the worst for them, and that the cooler temps make life much easier. I personally belong to the "I NEED HEAT" Category, LOL. But.....the Temps aren't the only thing that affects our RSD and all of it's various symptoms, the worst of which is the PAIN. It is the barometric pressure, and the levels of humidity outside that also affect us. Personally, I have found that I do best when it is warm and dry. The warm thing is pretty easy to do here in Alabama...but the Dry thing? Usually, that is a huge problem for me. Right now though, I am doing very well because my area is in a severe drought and having VERY low levels of humidity. Low humidity means it is DRY......Drought means that it isn't storming and raining here where I am, and that it hasn't in a while, and doesn't look like it will for a while. I am a happy camper, pain wise!

But......the stuff that usually would come over here and bother me, is heading for you instead. So, you are dealing with LOTS of barometric crap with all of the rain and storms that you all are and have been having over there. This is increasing your pain and other symptoms. Please try to keep that in mind. Reason that I say that is because the weather is something that WILL Change. You won't ALWAYS feel like you do right now. I can promise you that.

You mention taking so many medications. I remember that well, too. Don't get me wrong; I still take a fair amount of meds....but not like I did for the first few years with RSD (a couple of which I didn't even KNOW that I had RSD or what exactly was wrong with me). It is possible that one of your medications might not be working well for you, and actually be helping to contribute to the more depressed way that you are feeling right now. That was the case with me....and it happened more than one time. The worst and longest time, though, was when I was taking Neurontin. But, it has also happened to me when taking some other meds.....even ones that were FOR Depression, like Effexor. Those were the worst two for me. You might consider talking with your doc about how you are feeling, and if it is possible that any of your meds might be helping you to feel this way. There are many ways to look up meds on the Web. I don't know if you have shared your med list here on the forum, or not. But, if you have any questions about any meds that you are taking, you can always toss them out here and see what everyone says. Just also be sure to go and look them up for yourself, too. And ALWAYS remember that just because something didn't work for one person...doesn't meant that it won't work for everyone....or that it isn't working for you. I am only mentioning the med thing as a possibility of something that might be contributing to how you are feeling now.

At any rate...if your pain has increased and has STAYED up for a while now....you might need to change your dosing on some of your meds, or get a Breakthrough Pain Med (if you don't have one already), or do some other kinds of tweaking. I have been dealing with RSD for about 10 years now, and I have had to tweak my med list LOTS......and know that I will have to in the future too. This is something that just changes as time goes on. As our bodies change, and as we build up tolerances or find things that don't work for us. It is all just part of the whole RSD thing.

I don't know how much I have helped you here...but I hope that I have at least a little bit? I am very glad that you posted to let us all know how you are feeling. That is a GOOD thing, it really, really is. It shows that you are still fighting, even if you don't think that you are, or that you can anymore. You turned here to us for help....rather you knew that was what you were doing or not...and that is EXACTLY what we are here for! I am so very glad that you posted. I am just so sorry that you are feeling so badly right now. Things WILL get better. They really, really will.

That is something that I want to make sure that I say before I bring this long post to an end (I am sorry for that, too.

I know that I wind up with long posts....I just can't seem to help it. I do hope that you have read this, as I do know that there are folks that will skip over the longer ones....); Things will and DO get better! Remember how I said, way back in the beginning of this monster post, that I couldn't imagine living with this "Rotten Nerve Disease" and the pain and the docs and EVERYTHING like it was, while I was crying and freaking out at my mom on the phone? How I said that was when I was seriously contemplating putting and end to it all, because I didn't see how I could do this for ever and ever? Well....it doesn't stay like that. Things DO get better. I don't know if it is that our bodies learn to adapt to the pain....but even though it is still there, it rarely gets so bad that it is driving me insane, like it was way back then. I still deal with high pain levels too. I just....I don't know? Handle them better? I also know that when I am having a "Bad Day" or even a "Bad Run Of Days" that things will get simmered down. It might be easier for me to say that right now, while I am not in a "Bad Day" situation.....but, I think that even during a really bad flare up, there is still a part of my brain that knows that things will get better. The crap with the docs does get better too. That takes some time.....and it does take finding a doc that listens to you, and that knows what the crap they are talking about, and isn't just interested in getting you out of the office door, or into an OR to do all kinds of different werid procedures to you. There is a fair amount of trial and error that I had to go through to find out things that work for me. And, yes...I am scared to stray off of that well beaten path and try anything new or whatever that could even have a good chance of helping me more. I guess that is because I don't want to risk having more spread (My RSD also started out in my Rt foot. It spread up my rt leg, and into my lower back. It stayed there for a number of years....and then spread up to my rt wrist/arm a few years back after I mildly sprained that wrist. I have been lucky, because it hasn't spread since...and it isn't near as bad in my upper parts as it is in my lower). But, we all do what we have to do get through this.....and THINGS DO GET BETTER!

Please let us know how you are doing. We all care very much.

Lots of

Jose