Thank Mike,
Tessa, I know you are just trying to help.
You have a good heart and I know you mean well.
I just know that I have something that works for me and my drs have okay'd it so I just want to stick with it. I started this thread just to compare notes to see if maybe in the future, IF my meds stopped helping, that I would have other options to consider for dealing with my constant rsd and fibromalgia pain. But for right now I'm sticking with what works for me. I trust my drs and so far what they have prescribed for me for the past two and a half years has helped me cope better with my rsd and fibromyalgia pain and has helped me to lead a little bit of a normal life.

An acquaintance has a little something in common with you and merely enjoys your company for a short time. A fair-weather friend flatters you when the sun is shining and the birds are chirping. A true friend, on the other hand, has your very best interests at heart, nurtures another person when they are vulnerable without expecting anything in return.

So please take note of who remains in your life when times get tough, especially the people who sacrifice the resources they have in their life to help you improve yours when you need it most. Seriously, when you come out the other side of a difficult period in your life, look around you. The people still standing beside you are your true friends.

I see all of you as true friends. Even though I haven't met you, I feel that I've come to know all of you through our talks together. True friends don't always agree, have misunderstandings and sometimes fight. But I agree that they are always there besides you during the tough times. I believe you would all be there when things get tough for me, because you already have been. I hope you know I would be there too for you. Thanks for the nice explanation about friends.

Wow, thanks for sharing all of this!! You're always such great support to others on here and you seem so strong. I'm sad for how wide spread your symptoms are. I know most of us are not seeking sympathy, we are more seeking true understanding, empathy and advice that may help. Heaven knows that's hard to come by in the medical community and from people who don't have it.

I have tried Lyrica -very foggy and queasy stomach feeling
I take: Cymbalta
Baclofen at night (makes me tired)
Nucynta saved only for P.T and very worst pain
Topamax This is new since spread started in foot
Ketamine mix cream for topical burning

Then I think the only real difference made is by nerve blocks about every 2 weeks. I think this is lidocaine and clonidine. I've had about 17 of these now.
The most dramatic difference was after the first 2-3 when the swelling and skin condition was really improved. Since then I think it just keeps it stabilized. Who knows?

BTW thanks for the above it, I could actually feel the iHug from afar. The reason my doctors say that mine is so widespread/severe is because after CRPS set in (but before anyone knew it) another surgery directly on the affected nerves was performed. You may have read where in Dr. Hooshmands puzzles it specifically warns against nerve sympathectomy unless the person life expectancy is short. Sadly, one of the 3 branches was surgically severed (sympathectomy) only to make things much worse. Proof that direct trauma (surgical or otherwise) to the original site of CRPS II/Causalgia is not wise. I was initially devastated but I think because my doctors have been honest from the get go about my prognosis that it has allowed me to get to the "acceptance" part of loss much faster and now I focus on proving them wrong. I actually read in my chart notes where my doctor stated "grim prognosis" I can't explain how awful just reading that was.. and it took me a long while, many tears to get a grip on my future. Knowing that this said grim prognosis only involved more pain rather than death is a hard bone to swallow. Once I did swallow it and learned quickly that much of my fate in how I reacted to symptoms and pain lied squarely on my shoulders because no one could "really" help me through medications, therapy etc., that was when things turned around for me. Now when I go to the doctor it is to add "weaponry" to my toolkit rather than expecting them to "fix" me.. they can't. We can keep trying different things but that is about it.

Yes, I think meds, therapy etc., do keep things more stabilized (some better than others) which is actually the goal - to prevent pain and symptoms from getting to an intolerable level or at least attempt to. The best thing next to honesty that my doctors have done for me is to tell me: that if I didn't think something was working to go off of it completely (this means tapering sometimes) and at one point I did just that went off of everything including the 2700mg of Gabapentin I was on at the time turned the SCS off and then I knew how much things were actually helping even though it seems minuscule at times. Then we added things back 1 by 1 until we found the right combo (for that time.. it always changes as symptoms spread or worsen) and discarded or reduced dosage until we felt we were at the right place. Even with the SCS I have to turn it off for a little while or it loses its effectiveness but, when I do that it starts working better again.. for a while and then I start over. Thinking in terms of prevention rather than instant relief also helps. Like with the creams, patches and gels they aren't meant to work with one dose or to treat acute pain from flares or environmental influences, they were meant to be used regularly as the medication builds up over time. Many of the neurontin type medications are given with dosages 3xper day but we found that due to the groggy side effects that it was better to double up on the evening dose so that the medication hit me during sleepy time and I was still able to keep a consistent dosage, so now I only take it morning and night so I have better use of daytime brain hours. lol... it doesn't really help my brain is broken beyond repair

It is a tough game to play.. while balancing by a thread over hot flames!! I am grateful for every day I don't cry from pain.. that is my daily goal. When I cave.. I try, hard as it is to wipe the tears, assess and start over.

I am so grateful for everyone who takes the time to post no matter what the subject matter.. we all know life isn't always rosy!!

Renee I have found staying on a schedule with my opiate type ( pain meds) really helps with the pain waiting on the next dose. For example I can take 1-2 Lortab every 4-6 hrs. I also have Percocet 7.5 mg. I no longer wait for pain to start to take my next dose and I can definitely tell if I'm late on a dose. Not sure if that is going on with you. Hope it helps.

Thanks for your advice. I try to take my percocet along with my other pain meds every 6 hrs as needed. I can also tell if I'm late on a dose. That could be the reason I had such a bad flare the other day. My husband tells me the same thing. He says I should start writing down when I take my meds because my memory is affected by the neurontin and I sometimes forget when I took my last meds. Sometimes though I need to take an extra percocet and an addtional neurontin, which my dr okay'd, when I get bad rsd and fibromyalgia flares. That usually happens when the temperature changes like right now. It's so cold and that makes my pain worse. Thanks again for your advice. I agree with what your saying and appreciate your advice. Hope you have a good night.

Renee,
Please read over this thread carefully and show me where anyone said you "were wrong" or to "stop taking them"?

Yes, you may not react the same way.. and the SCS might have worked for you. Did you not question one of your doctors in this regard? Is that criticism or did you have valid concern about this procedure? Did the mere suggestion of this to you, by your doctor make him less credible? NO, it just means that sometimes even our own doctor's recommendations don't always work for us. Neither is wrong for choosing one way or another but the advice, suggestions etc., is given as "food for thought" to the poster and to the others that are reading this forum. The information might not always be useful at the moment or to that person but to someone at some point it may be.

You yourself posted *admin edit*about the need to share harmful effects so that others don't suffer.. so why is this such a problem when we are sharing that with you?

Bottom line:

None of us told you NOT to take your meds. What we did was offer alternatives and tips on how to take it differently so that it may help you better. None of what has been said indicated that you were doing anything wrong or not to do it.

I for one questioned your doctor advice based on things you have posted out of CARING and CONCERN for your well being, but I in NO WAY did I put you or your doctor down. You obviously questioned one of your doctor's advices when it came to the SCS; did you not? Why is that any different? There are plenty of great doctors out there that don't always recommend the right things or don't put all the pieces together.. frankly because we often don't share all the details in such a short office visit or we didn’t realize that the two things have any connection. Example: when I first began taken Neurontin and became very anxious I thought it was just because I was scared and stressed out at this whole diagnosis and pain – I didn’t realize until later that it was the meds increasing the anxiety, if it weren’t for someone on this forum mentioning it as a side effect for them, I would have never became aware and that could have put me over the edge very easily. We can see and hear your depression or thoughts of suicide etc., through your posts - does your doctor? Probably not, if they did and they haven't considered maybe the med combo is at the very least contributing then they are doing you a disservice.

Personally when I try new meds or change dosages I always alert 2 people (my husband and my best friend) because it is easier for them to see changes that I might not. This takes a great deal of trust and can also be very difficult if the need arises to address something.
Regarding life choices; you have missed the issue. DNR orders are not the same as assisted suicide or intentional suicide. I don’t remember anyone questioning whether or not to sustain life when life cannot be sustained on its own. That is an entirely different issue than what you brought up in your other thread.

It is very sad that you feel the way you do.
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Dont know the technical side of it but i know it works for me
it takes the edge off it helps you to relax and for me it helps with brain fog
if you know what i mean

hope this helps

Rock on Peace out Mike NZ