Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@pfbacon

I don't do mail order with Humana since they royally screwed up a prescription of mine – they withheld the medicine and wouldn't tell me why or call my doctor either – they could have killed me. They were unapologetic. Peggy

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@pfbacon Hmm. Did they give you your medication eventually? I've never had any problem with them. They always send a text or voice message when it's getting close to the refill date, sometimes sooner than I need. My problems are with doctors sending my prescriptions to the wrong pharmacy. I always give specific instructions, but I've spent hours searching for where my medication, often something that I'm out of. I have 3 pharmacies on my list, a local Rite Aid for something the doctor wants me to start taking that day, the Walmart in another town where we go to church for a new or short term one that can wait until Sunday, and Humana for refills and medications that require a fresh prescription each month from the doctor. It can be a merry go round.

I don't have Bi____ fill any prescriptions because they made a major mistake and gave me a medication used to calm problem patients in mental health facilities. It caused the classic symptoms of Parkinson's, observed by my neurologist. I took it for a month, and happened to be talking with the psychiatrist and he asked how I was doing on – I don't remember the name of the medication – and when he said the name, my wife alerted to the fact that it didn't sound right, and the psychiatrist came (mildly) unglued. He said it wasn't the first time he'd seen that happen. I sued the company, went to a jury, and I barely got the expenses I'd incurred.

It's likely that most pharmacies, if not all, botch things at some point. I shop at the store, but not their pharmacy.

Jim

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@jenniferhunter

@mlross4508 @dmac5 Myofascial release is wonderful. It takes patience and it works. I've been doing this for several years and even had some great progress yesterday while working a tight muscle that my PT worked on earlier in the week that has been interfering with my breathing for a few years. I have thoracic outlet syndrome which is a nerve entrapment problem caused by tight fascia, and MFR helped with my recovery form spine surgery and breaking up the surgical scar tissue. My PT is an expert level therapist in the John Barnes methods and taught me a lot. We have a Connect discussion on MFR at this link where I've collected some information and videos. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Unfortunately for me, I checked into certified MFR practitioners in my area too late in the year and it’s about a two hour drive to anyone from where I live anwith working full time and winter weather for the next many months, I will need to wait——-but I will check into it next summer!

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@migizil, Good evening. My MFR therapist has a current list of James Barnes certified MFR practitioners. If you care comfortable sharing, please tell me where you live….the city and the sate. If you feel better and wish more privacy just Private Message me. Be healthy and free of pain, Chris

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@jimhd

@pfbacon Hmm. Did they give you your medication eventually? I've never had any problem with them. They always send a text or voice message when it's getting close to the refill date, sometimes sooner than I need. My problems are with doctors sending my prescriptions to the wrong pharmacy. I always give specific instructions, but I've spent hours searching for where my medication, often something that I'm out of. I have 3 pharmacies on my list, a local Rite Aid for something the doctor wants me to start taking that day, the Walmart in another town where we go to church for a new or short term one that can wait until Sunday, and Humana for refills and medications that require a fresh prescription each month from the doctor. It can be a merry go round.

I don't have Bi____ fill any prescriptions because they made a major mistake and gave me a medication used to calm problem patients in mental health facilities. It caused the classic symptoms of Parkinson's, observed by my neurologist. I took it for a month, and happened to be talking with the psychiatrist and he asked how I was doing on – I don't remember the name of the medication – and when he said the name, my wife alerted to the fact that it didn't sound right, and the psychiatrist came (mildly) unglued. He said it wasn't the first time he'd seen that happen. I sued the company, went to a jury, and I barely got the expenses I'd incurred.

It's likely that most pharmacies, if not all, botch things at some point. I shop at the store, but not their pharmacy.

Jim

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Thank you for asking, Jim. I called my doctor, he phoned it in to a local pharmacy, I never used Humana by mail again. Peggy

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@artscaping

@migizil, Good evening. My MFR therapist has a current list of James Barnes certified MFR practitioners. If you care comfortable sharing, please tell me where you live….the city and the sate. If you feel better and wish more privacy just Private Message me. Be healthy and free of pain, Chris

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I have been in contact with a MFR practitioner, who was wonderful trying to find someone in my community. I live in Bemidji, MN. Thx for caring and wanting to help. Take care.

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@migizii

I have been in contact with a MFR practitioner, who was wonderful trying to find someone in my community. I live in Bemidji, MN. Thx for caring and wanting to help. Take care.

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@migizii Here is a list for MN. It looks like there is someone about an hour an a half drive from Bemidji in Detroit Lakes. You can also call Therapy on the Rocks in Sedona, AZ and ask who has trained there. That is John Barne's practice. They may not all be listed on the website.
https://www.mfrtherapists.com/app/list.asp?state=MN&country=US
http://therapyontherocks.net/

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@jenniferhunter

@migizii Here is a list for MN. It looks like there is someone about an hour an a half drive from Bemidji in Detroit Lakes. You can also call Therapy on the Rocks in Sedona, AZ and ask who has trained there. That is John Barne's practice. They may not all be listed on the website.
https://www.mfrtherapists.com/app/list.asp?state=MN&country=US
http://therapyontherocks.net/

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Thx for the info! I already know about the Detroit Lakes and Brainerd practitioners but am unwilling to make those drives during the winter but I might check your other resource to see if anyone from my town has trained in Sedona.

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Hello,
My name is Steve and I have Complex Regional Pain Syndrome (CRPS). In early 2011, while getting g dressed, I felt a sharp pain and heard a very distinctive "popping" sound in my wrist. Thinking that " Father-Time" was just paying me a morning visit, I didn't think much of the incident at the time. Over time the pain intensified and noticed that my tendon/ligament (left wrist) loved to jump around doing its on version of the "daily happy-dance." After visiting a couple of hand-wrist surgeons in the area, it was determined that the tendon/ligament required surgery to be tethered down. This surgery was performed in Aug.'11; however, the pain level became greater than the nature of th surgery. In 3 months, exploratory surgery was performed and there was nothing out of the ordinary, but pain continued to worsen. In Nov 2011 I was then diagnosed with CRPS aka RSD. By 2013, my CRPS was now bilateral (both wrist). Incidentally, the right wrist began with ligament / tendon issues. The conventional treatment of meds, PT and even a ketamine infusion proved to be no match for my condition. My Pain Mgmt Doc was very aggressive and on top of all the latest treatments for CRPS.. ln 2015, I received a NUERO-STIMULATOR, which in conjunction with meds ,has somewhat managed my condition.

Last Oct'18,I had TKR -( Total Knee Replacement) and earlier that year sprained my ankle ( yes on my left) and now have CRPS in my legs including both feet. Last month I had NUERO-STIMULATOR #2 implanted for my lower extremities. Still to early to determine if this procedure is effective. Still mending from surgery.
Couple of other areas of interest.. my pain level averages 6-7 daily, CRPS created sleep apnea, so have CPAP, on long term disability and pending a couple more surgeries., (R – Wrist and R – Foot).
That all said, I deal with things, one day at a time. With CRPS, each day can be different and this condition is hard for our loved ones to always understand. I strive to not let this define who I am, but some days it holds the upper hand, so I am glad to join this group. I am a Christian/God- fearing person and look foward to meeting each of you in hopes that I can listen/learn and help/motivate.

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Good evening, @jazzberry15, Welcome to Connect, where it is possible to meet folks who share your diagnoses and have had similar surgeries. It seems like you have had injuries & accidents as well as surgeries and treatments. If I counted correctly, you have been on this journey for about 9 years.

It would be helpful if you could answer the following questions so that you can be introduced to other members who share your challenges.

What is the pattern of your pain? Does it accompany numbness? Tingling? Is it in your hands and/or feet?
What surgeries are planned for your wrist and foot?
What medications are you currently taking to help you manage your chronic pain?
How well does this program control the 6-7 pain level you have daily?
Are you seeing a neurologist or another type of clinician e.g. orthopedic surgeon, in addition to your pain management Dr?

I am so sorry for your situation. I, too have been way too friendly with pain for a number of years and have attempted multiple surgical solutions.
May you be free of suffering tonight……Chris

Liked by lioness

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I’m Vivian.
Newly diagnosed with PMR, and trying various things to deal with the pain. Can’t take Prednisone…

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@vfaye

I’m Vivian.
Newly diagnosed with PMR, and trying various things to deal with the pain. Can’t take Prednisone…

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I hope my post helps with your decision. Best wishes & soft hugs.

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@msstoppainnagginme

I hope my post helps with your decision. Best wishes & soft hugs.

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Hi I’m smilie and I usually post in the depression group, but right now I want to be here. I still don’t know how to post so I’m doing it this way. My joints hurt and I can never sit in the bathtub again, I can’t get in or out. I don’t know how to stop crossing my legs at the knees. It looks like a number four, I do it with both legs and my physician said stop doing that. I even do that when I’m lying down in my bed. Any ideas? Thank you!

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@migizii

Thx for the info! I already know about the Detroit Lakes and Brainerd practitioners but am unwilling to make those drives during the winter but I might check your other resource to see if anyone from my town has trained in Sedona.

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@migizii Ah yes, those famous Minnesota winters… and snow season has already begun. When I had spine surgery in Rochester 3 years ago, we waited an extra day before driving back home because of some snow. There are some books and videos about self treatment on the MFR website that might help, but that won't take the place of working with a therapist. In case a travel option would work for you, John Barnes has clinics in Sedona and Pennsylvania and you can go there for a week of some intensive treatments, kind of working on it all at once. I've never done that, and my insurance wouldn't cover something like that, but it is an option if you can afford it. Even doing Yoga is fascial stretching.

I've been doing MFR for several years and have gotten pretty good at inventing ways to stretch my problem areas and listening to my body, and it complements what my therapist is doing. I have small balls that I can lay on, and a question mark shaped massage thing that has rubber knobs on the end that are great to push and pull on the skin to get a shearing action for fascial stretching. I used that and kept working on a tight spot she had started worked on, and got a breakthrough and significant improvement in that spot just last week. I bought that tool at a discount store ( 5 Below ). It sounds like you live in a remote and beautiful area of the country. When I was growing up, we had a canoe that was built in Bimidji.

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Suba here. I've suffered chronic bilateral foot pain for over 20 years. Once an excellent athlete, I can now stand for maybe 10 minutes without suffering. Multiple surgeries for nerve release. Injections. Therapy. Nothing has worked. So I'm here looking for any possible next step. I see some literature on dorsal root ganglion and have hope!

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@subaroux01

Suba here. I've suffered chronic bilateral foot pain for over 20 years. Once an excellent athlete, I can now stand for maybe 10 minutes without suffering. Multiple surgeries for nerve release. Injections. Therapy. Nothing has worked. So I'm here looking for any possible next step. I see some literature on dorsal root ganglion and have hope!

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@subaroux01 I'm on a path very much like yours. Have you had a spinal cord stimulator implant? I had one in June of 2017, and it gave me 75% pain reduction. It was wonderful! First I had to go through a bunch of formalities, including a screening by a psychiatrist. It took several months to do all of that. Then came the week long trial, to see how effective it would be, then a few weeks of waiting to get on the surgeon's surgery schedule, and after that, another six weeks to let the surgery site heal. And finally the stimulator was turned on. For a year I enjoyed relief from the neuropathy pain in my feet, and after that the Abbott rep made adjustments. The longer I had the stimulator, the shorter the pain relief lasted. Now I meet with the rep every 3 months to make another adjustment. I would feel better, though it didn't last long, but I held off for a while before I called him again.

Even though the scs isn't as effective as it was at first., I'd do it again because living with that pain before the implant would pretty much have shut me down completely.

I met with a surgeon a couple of months ago to discuss the possibility of a drg implant. Her recommendation was that she would speak with the Abbott rep about other adjustments to the scs. I'm waiting to hear from him. She is very knowledgeable and has had a lot of experience with both the scs and the drg implants. In the meantime, my pain doctor prescribed yet another medication, imipramine, and after a couple of months, I can say that it's greatly reduced the burning pain in my feet. I still deal with some pain, but it has lowered from between 6 and 9, to 3 – 6. During the day my feet hurt the most when I walk very much, or stand on a hard surface, and, strangely enough, putting my feet up in the recliner or bed. It's pretty unpredictable.

Back to the drg implant. The implant specialist wants me to try a different approach to the settings on my stimulator, and maybe she knows medications that I haven't already tried. I'm on hold for now, doing what I can to deal with the pain as best I can. The specialist indicated that she wanted me to do a few things before getting the drg implant, because the drg is essentially the last resort, to be done when every other option has been tried and ruled out.

So, given that I've tried every medication available for neuropathy, an SCS and pain therapy, my recommendation would be to give all medications that could possibly lower your pain level, and any non pharmaceutical option, and hold off a drg if you can. Be aware that this is not a recommendation from a healthcare professional, simply sharing my story with you.

Jim

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