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Joselita · 04-24-2007, 05:36 PM

HWRSD,
I have to admit, that I am pretty confused here. I realize that you don't know me, as I have not been posting much since you joined, so I guess that I should introduce myself first, before I say anything else.

Hi. I'm Joselita, AKA Jose, AKA Josie, and probably AKA more things than that.

LOL. I have been knocking about with this group for...well...a very long time. I have RSD that started in my right foot, spread up my leg and into my lower back, and then finally (so far "finally" anyway) spread to my right hand/arm/shoulder (last spread was back in...oh...2002ish, I believe? Don't have my med records right here to check, but it has been a while ago). I have had RSD since I was 26, and I am 37 (will be 38 this summer)...so for over 10 years now (got hurt in Feb of the year I was 27. Sorry, but I remember the ages I was better than I do the years, and to go back and count on my fingers trying to figure it all up will just make my head ache right now. LOL). I found these folks...oh...not long after I got my DX, which was....erm....in 1998-9ish? At any rate, my point is that I have been around for a while, and have had RSD for a while, and tried many different things, and am no Newbie to this myself. I am sorry to hear that your Husband has this awful disease. I know how hard it is to be a parent of small children while trying to deal with RSD. I am a single parent of 2 teenagers (now 18 and 19.5 years old...) But they were just small when this came to live with us. 2nd and 3rd grades small. So, my heart goes out to you and your entire family.

Oh...I guess that I should give a warning right about here; I tend to have LONG posts. Doesn't seem to be anything that I can do about that (I have tried...and it just doesn't work).

I write like I talk, which evidentially is A LOT! ROFL.

Ok. Now on to my confusion. And, please don't read this in any kind of hostile voice, Ok? I know that things can be read in very different voices then how the writer intended, and I assure you that I do not intend to sound any way hostile or anything like that. Just simply confused.

Where I have gotten confused is at a couple of different places here. The first thing that hit me was; Why so defensive and almost aggressive towards Artists post/question? I looked and looked, and I don't see where she uses the word "liar" or "lie" or anything like that. All I see is her asking for where you found the info about the Neurontin staying in the system for 3 years after it has stopped being taken. It looks like she was being very careful about asking this too. So..I am not sure that I understand why you got so upset? Or, at least why your post sounded so upset?

Next thing that confused me, was all of those other posts that you put up in your response. Pretty much, we have all read very similar things here (or on the original BT site). In fact some of us, myself included, have even suffered from these side effects mentioned. If you look, there are folks that will refer to Neurontin as "Neurotten", and that is for that very reason. But, in none of the things that you put up here, do I see anyone saying anything about the 3 years thing? So, I am confused? Why all of those other things by other people?

Pretty much, I do agree with Artist, in that we have to be very careful about some of the comments that we make about different drugs and treatments that folks talk about here on this site. If you have experience with a certain side effect, then by all means post it! But, if it is super important info like a med staying in the system for years at a time...well....that kind of thing kinda needs to have something that folks can go to, to read about it for themselves too. If that makes any sense?

I understand that you have picked up lots of information along the way, while trying to help your husband figure out what would be the best route for him to go, as far as treatments and meds. I understand that LOTS of research has been done in order for you to try to do that to the best of your ability. But, just like any other research, it kinda needs Cites to help back it up. Otherwise what can happen are some very NOT GOOD things. For example, folks can panic and either refuse to take a med that might very well work for them without really having all of the information that they need to make that kind of decision, or they can stop taking a med out of fear of whatever possibly happening to them(even if they aren't having side effects, or not bad ones, and the med IS helping them), or there can be a HUGE big argument pop up on here between the folks that a certain med or treatment helps, and those that it does not. Believe me, I have seen that happen more times then I like to think about. It is awful, and I dont like seeing all of the folks that I care about feeling all weirded out unnecessarily, especially since there is so very much for us all to be weirded out by on a daily basis living with RSD.

Basically, there are a couple of big things that we all need to keep in mind here. One is that EVERY treatment and EVERY med doesn't work the same on EVERY patient. What works for some, will not work for others, and will possibly even make yet others worse. There is really no way of telling. The other is that there are LOTS of folks that come here to find out the majority of their info, just because they don't have the energy, strength or ability to sit at the computer for long hours at a time trying to look up lots of stuff. There are many posts here that have links that are easy to click on to go and read whatever might interest a person. There are many people that share their own personal experiences, or those of the people that they care for that have this disease, to try to help others make a more informed decision, or to try to help them figure out why they might be feeling such and such way, or having such and such thing happen.

Like I said, I am really no fan of Neurontin, as I was put on the stuff back at the beginning of my RSD journey and had some really crappy side effects. Horrible Brain Fog (totally feeling stupid and not being able to make sense for forgetting even my basic vocabulary), slurred speech (that really concerned and scared my mother), bad vision problems (had a hard time focusing and not having things all blurry), a totally drugged feeling worse than ANY narcotic that I have ever taken before or since, and HORRIBLE weight gain (that I am STILL fighting to get off, even all these years later). I wound up weaning myself off of the stuff in about 2000-1, because I just couldn't take it anymore, and was sick of docs trying to say that I would adjust to it over time. Yeah..that didn't happen. So, I chucked the stuff, and said "Never again!".

But, all of that said, I have to respect the fact that while Neurontin did NOT help me in the least (and really made me feel worse in lots of ways), it Has Been and IS a "Wonder Drug" for lots of people. That is just how it is. So many folks that are better and in less Pain because of Neurontin, that it is something that can't be ignored or shunted off to the side. Nor should those people be made to feel afraid, or that they have to go and get into a huge fiasco with their Docs, or worse, that they need to get off of the med and go back to insanely high pain levels. Not if it is working for them. Also, folks shouldn't be scared away from TRYING the med, especially if their doc is suggesting it, for the very fact that it might actually work for them. A "non compliant" in some folks folder will make or break their WC cases, and what their doc will try to do to help them in the future (or not, if he decides to drop them for being non compliant too much and tying his hands).

We have to think of all of these things.

To warn about a possibly bad med interaction is fine. The other folks that responded about that topic either told of their own experiences or gave web sites to go and look it up on. Can you see the difference between that and the very vague and very scary "warning" that you just kinda tossed out there as an after thought on your post? I hope you can...

Anyway..I really don't want to see some big conflict pop up here. We all have too much to deal with already, and conflicts on the board are stressful. And we all know that usually stressful=flare or pain increase. No one needs that..right? I am sure that you don't need a bunch more stress than what you already have in worrying about your husband, trying to take care of him and the kids too, all the while holding down a job to support your family. Sheesh! That is stress enough for anyone! I really do believe that Artist's query was well intentioned. She is just trying to help look out for other members, too. She is really a very nice person, if you get to know her. I can tell you that first hand. I hope that you will find that out too.

Thanks for reading this, if you made it this far. I know that this got long, but that just seems to be how I type. I really hope that I didn't manage to offend you, or make matters any worse or more stressful for you, as that was not my intention at all. If I have, though, please don't hesitate to let me know HOW, so that I can try to clear any misunderstandings up as quickly as possible, Ok? Hope that you are having a really good day, and that your husband's pain levels are down at least a little (would be better if they were by A LOT, as that is news that we all like to hear!). Thanks again for your time in reading this.

Take Care,
Joselita