Chronic Pain members - Welcome, please introduce yourself

2. RSDSA: rsdsa.org
3. Other: The Burning Nights, Burning Limb, etc.
a lot of the groups and associations are based in Europe but many members are from the USA. 🙂

You can also contact the New Hampshire Task Force for ideas. Don’t try to reinvent the wheel. Lol

@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

Hi Chris,
You seem to be very knowledgeable. I went off the Meloxicam and now the neurologist put me on Methyiprednisolone for six days for my back pain. This week I am going for an injection for my back, think it is lidocane. I guess I have to keep trying whatever they throw at me!
Thanks for corresponding with me.
Stay well!!

@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

Lol I’ve dedicated my life to helping others... as a pharmacist for 23 years, as a caregiver of my husband who’s been disabled due to his issues for almost 15 years, my grandmother when I was a teenager, and now this.

I’m tired but won’t let anything beat me. 🙂

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.

@faithwalker007
Renee, if you are comfortable talking about it, I'd be interested to hear why you had so many elective surgeries. Also, do you attribute the development of the CRPS to the surgeries?

Elective? Only a handful were elective. A majority were due to my soft cleft palate repair and ear damage as a child. The others were emergency gall bladder, appendectomy, and small intestinal resection due to blockages, two were due to having the last surgery for my soft cleft which my parents couldn’t afford for me as I child (I had it as an adult) and the surgeon nicked an artery so I had to have a second emergency surgery to repair it.
In the meantime, I injured my knee at work and had to have it repaired, then had it repaired. It was re-injured and fixed again in

Most of my surgeries have not been elective but emergency or required. I couldn’t walk when I finally had my TKR. I had a frozen shoulder for two years before I had it manipulated and then it took two surgeries to loosen it. My emergency appendectomy turned into a small intestine resection due to a blockage.
My life has never been easy but oh well, I take what comes.
I really don’t know why I developed CRPS. I’ve suffered from severe migraines since I was 14 and arthritis in my knees since I was 26. I’ve worked 12-16 hours on my feet and only used Celebrex until right before my TKR and the onset of CRPS except for my migraines— hello Demerol!
I’m not a researcher but as a RPh, I’ve seen some horrible things.
My husband was “floxed” and “roided” with Ocuflox and Otic steroid Rxs to open wounds in his inner ear after chronic cholesteotomas were removed (over the course of ten years for the Ocuflox and forty years for the steroids.)
As a result, he has loose, fragile joints and frail tendons. 39 surgeries later, he now refuses to have more even if they are necessary.
Do multiple surgeries cause chronic pain? Yes. My husband is a testimony to that fact. Do they cause CRPS? Maybe. There are times we believe he does have it but we are not sure. He’s never been diagnosed with it... yet.
We know he has neuropathy in his feet. Is it caused by windup? Good question.

@faithwalker007

I'm not in your league when it comes to surgeries, but I've had my share, not many electives. I guess a deviated septum procedure might be labeled elective, but I could breathe freely for the first time in my life. Cataracts, gall bladder removal, emergency toxic mega colon, 80% removed, 45" small intestine resection, peptic ulcers, bowel obstructions, SCS implant, 2x right shoulder, torn menisci right knee, brostrom procedure and implant of an internal brace in left ankle, and the recent spinal stenosis surgery. Generally, I've been blessed with good health all my life, and everything I listed above is relatively minor. I do have a number of things that require attention, esophageal dysmotility, silent reflux, sleep apnea, diplopia, decreased taste and smell, numb fingertips, bladder and bowel problems, ED, pain that has progressed from the balls of my feet and moving up my legs. Most of these things are almost certainly related to autonomic neuropathy and idiopathic small fiber peripheral polyneuropathy. Knowing that only indicates a cause. But because neuropathy isn't curable, we can only treat the symptoms, and as you know, that's no simple matter.

I only mentioned the physical issues I deal with. I began treatment of major depression in 2003. Within 2 years, depression was severe, making it impossible to function in my job, so I retired at 55 on Social Security disability. In 2005 and 06, I attempted suicide a number of times, and I self admitted to a new, very nice facility for people who have attempted suicide, and stayed for 6 weeks (typical stay is 3 days). After that I started therapy and met with a psychiatrist weekly for several months, to assess my mental health and find meds to treat it. He told me that I had major depression (no surprise there), anxiety disorder, OCD, and PTSD. I'd lived with those things a long time, unaware that there were treatments for them, just thinking that it was normal.

So, having a duel diagnosis of physical and mental illnesses, it's been really hard to keep going. Pain control and therapy for depression et al, along with the other things that come my way are an ongoing challenge. Pain and depression exacerbate each other. When the pain gets bad, I'm more depressed. Called a vicious circle. And the presence of depression, anxiety and PTSD makes it really difficult for me to do things like what we've been discussing, becoming an active advocate for those of us who have severe chronic pain. Just dealing with the volume of messages in my inbox is more than I can do many days. For me, yard work and the care of our place is therapeutic, both for depression and for pain. Even that can be overwhelming. For now, I work to take life one day at a time.

I'm rambling on, but I've come to the end of my ability to articulate.

You're an amazing person.

Jim