Chronic Pain members - Welcome, please introduce yourself

@faithwalker007
Hi Renee, I'm Hank and I noticed this post of yours as I was poking around Connect this morning. I also went and read some of your previous posts from 2019. I'm sorry for your painful condition of CRPS. Also sorry about the hassles you are having getting the meds you need to give you a little bit of comfort. I noticed you and Lori @lorirenee1 talked back in 2019. If you look through your old posts you'll find your conversation with her. I have some questions:

Did you ever get around to trying kratom? If so, results?
Did you ever look into the Calmere (scrambler) therapy? If so, results?
How is your DRG stimulator working for you at this point and are you happy with it?

Lori had a DRG installed about 3 months ago or so and so far it seems it has not worked as well as hoped. Maybe you guys can compare notes. I love all of your pictures. Love your great dog! It's a shame such a seemingly idyllic life that you were living had to be so badly messed up by something as seemingly innocuous as knee surgery. I'll tell you, with all the people getting things such as CRPS and neuropathy from surgery these days it is making me very reticent to have surgery ever!

Best to you, Hank

@faithwalker007

Browsing the web this evening, I found an article, "Fighting Chronic Pain", by Peter Jaret, in the April 2013 issue of AARP magazine. It's pretty well buried, but I persisted by searching with the keyword "opioid". I arrived at the AARP website via federal seniors with disabilities searches.

Anyway, if you want to get your BP up a notch, read the silly things he reported as options for pain relief. Not all silly, but to anyone with chronic intractable pain, is massage a viable long term solution? Or acupuncture (who can afford either one, since Medicare doesn't cover them - that in itself ought to call into question the effectiveness of the many alternative therapies)?

I read the article and the comments by people who live in the real world, and have severe chronic pain. I'm going to outline a comment of my own and post it.

I haven't yet found a committee in Oregon that is addressing this issue. Unfortunately, Oregon has set the 90mg limit on opioids. Yes, marijuana is legal here, but that's meaningless to someone like me who can't afford the doctor who prescribes, the fee to the state (both around $250, annually), or the expensive product. On top of that, my doctor said that if I used any cannabis, he would stop prescribing any pain meds.

I know from experience that morphine gives me 50% pain relief, if I take my full prescribed amount, which I don't because I'm afraid of running out or being denied, and if I could get a therapeutic dose, it would be even higher. Jaret reported that opioids give only 20-30% relief. I have to wonder if he spoke with anyone who is in tears or suicidal because of the terrible pain. If he or someone he cared about were in that position, I wonder if he'd write the same (in my opinion) nonsense.

End of vent.

Jim

Hi Hank, I haven’t tried Kratom no. I can’t really remember what that is, sorry! I’ve tried mirror therapy, needling, etc but access to KNOWLEDGEABLE CRPS therapy is impossible. I’m the one suggesting treatment to my pain provider after checking with my neurologists to make sure I can do it—I’m epileptic with history of tonic-clinic seizures and related aura and non-aura fully engaged migraines since I was 13 years old.
My history and diagnoses make treatment very complicated. Physical therapy has proved to be a waste of time, energy, and resources (money, time, and spoons), not to mention the incredible pain I suffer in the aftermath.
I’ve had over 25 surgeries in my lifetime alone to go with my husband’s 40. The last one was supposed to make my life easier instead it marked the destruction of everything I’d built in the face of those challenges.
I may be tired but I’m not defeated. But I will say this— a little respite I’lll I’ml I’m
short-sighted, bureaucratic ridiculous battles would be nice. Lol
As for my DRG? The testing Phase went great but when they implanted it, my relief dropped from 90% to 25-30%. I discovered they had switched the leads. Doctors especially ones who have patents pending on leads- have little ethical code.
I keep the DRG SCS because relief is what it is no matter the degree pain relief matters.
Thanks for the reply.

Good evening @esperanza22.....you are not and never will be a bother. Meloxicam is for arthritis and is an NSAID if I recall correctly. What other prescription are they sending? Was it explained to you? The Duloxetine also called Cymbalta is just for anxiety, depression, and nerve pain. The Gabapentin is mostly for the tingles and needle-like nerve pain that seems to ramp up in the evening. I have replaced some with a THC rich Releaf Balm from P and B. (more info if you are interested) One of my decisions yet to be made is how to continue to reduce the needle-like discomfort without using medications with known side effects. Good luck you say. I agree.

May you have comfort and ease.
Chris

Hi Hank, I haven’t tried Kratom no. I can’t really remember what that is, sorry! I’ve tried mirror therapy, needling, etc but access to KNOWLEDGEABLE CRPS therapy is impossible. I’m the one suggesting treatment to my pain provider after checking with my neurologists to make sure I can do it—I’m epileptic with history of tonic-clinic seizures and related aura and non-aura fully engaged migraines since I was 13 years old.
My history and diagnoses make treatment very complicated. Physical therapy has proved to be a waste of time, energy, and resources (money, time, and spoons), not to mention the incredible pain I suffer in the aftermath.
I’ve had over 25 surgeries in my lifetime alone to go with my husband’s 40. The last one was supposed to make my life easier instead it marked the destruction of everything I’d built in the face of those challenges.
I may be tired but I’m not defeated. But I will say this— a little respite I’lll I’ml I’m
short-sighted, bureaucratic ridiculous battles would be nice. Lol
As for my DRG? The testing Phase went great but when they implanted it, my relief dropped from 90% to 25-30%. I discovered they had switched the leads. Doctors especially ones who have patents pending on leads- have little ethical code.
I keep the DRG SCS because relief is what it is no matter the degree pain relief matters.
Thanks for the reply.

@faithwalker007
I appreciate your answer to my post. From everything I have read so far from you I would say that you are like the little engine that could, i.e. you will not be stopped no matter what. I find that very inspirational. Were your 25 surgeries related to the seizures, and have they helped you? Did the CRPS develop out of the surgeries do you think? Wishing you good luck in your fight for pain meds!
Thanks, Hank

@faithwalker @jesfactsmon Hi Hank and Renee, First, Hank, you are just simply the best. You could be the secretary of Connect, being how well you keep track of everyone here. Thanks from the heart. Renee, my heart goes out to you. Yes, I do remember writing to you in the past, and I am here to perhaps help you. Notice the perhaps, because with pain, you really just never know. First, Calmare (Scrambler) therapy must be mentioned. It is a device that brings electricity to where you hurt and there is good research about it with CRPS patients. I had it done in 10 sessions, 45 minutes per session. It alleviated pain quite a bit for about 3 weeks, and then stopped helping. I repeated these sessions, and it did not help at all. I am still telling you because I have met 2 CRPS patients that it helped very much. I also have the DRG stimulator for about 3 months now, and it barely does anything to help at all. Seemed I had about a 50% relief of pain during the trial, but it just is not working with repeated adjustments, programs, etc. Next to see if my wires have migrated. Any insights about the DRG that you have would help me much, just to know what you think may have gone wrong. Lastly, most importantly, is Kratom, because Kratom is the only good thing I know of to take for severe nerve pain. However, it is not FDA approved, and the moderators would rather I speak of it in private messages here. Please, let me tell you about it if you are interested. Message me at LoriRenee1 I am here to help, if I can. Lori

I do remember talking to you Lori! I have a suggestion about your DRG. I turned mine off (involuntarily, I put my cell phone too close to it and it shut off) for 5 days or longer. If it truly isn’t relieving any pain, you’ll know it. If it is helping AT ALL, you’ll find that out too.
Like you, I have had mine reprogrammed over and over since it was implanted and never have reached the level of relief at the trial. It has not even given me the level of relief I would say I could actually “feel” or rank.
I was actually thinking of getting my paddle leads changed out until I ran my accidental shut-off experiment. It was at that time I discovered the Stimulator does give me relief- about 20-30%. It is nothing compared to the trial but better than nothing and enough to not risk another surgery on my back.
I’ve has too many surgeries on my entire body from my eyes, ears, and nose to almost every large joint and my GI tract. I can’t have anymore elective surgeries without risking my CRPS to spread to more areas. It’s already spread too far already.
My overall pain relief goal is 50-60% and I’m close to achieving it. I’m right at 40% on a good day with the decrease to Percocet. Even on Dilaudid I only reached maybe 60 or 65% but I slept most of the day away.
Not exactly a good existence.
But I never have and still don’t know what to expect from this disease.