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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I received, and am dissatisfied with help from pain management people too! I walked out and slammed the door on one neuro doctor who knew my thalamic stroke diagnosis and treatment. He was completely off track and was soon dismissed from the clinic. I recommended all treatments for myself ( lyrica and lamotrigine mainly) and rejected or tried fail modes to keep them “happy”. Do NOT expect ANY morphine derived drug to help these pains. By and large reject or just stop them except under extreme circumstances.

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@harley22

My pain management appts are the same.
Pain meds adjusted and refilled.
I’m still in pain on a daily basis with both of my feet hurting so badly that I can hardly walk at times.
Do t know what else to do either.

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They collect your copayments!! I’ve been to one in the past, and after a couple months I decided that I didn’t want to have to fork out money for a copayment every month just to get my meds. So I spoke to my PCP and she had written all of my meds ever since.
Yes, we HAVE TO self advocate for ourselves because no one else is going to!!

- Trish

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Hi! My name is Peggy and I've had neuropathy(not from. Diabetes) and I've decided to proceed with a spinal chord stimulation device after other treatments were ineffective. Nice to meet all of you and if you have feedback please let me know! Thanks.

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@ruislip0416

Hi, I am a 68 year old woman who has had chronic pain since I was 14. I have constant migraines, fibromyalgia, two vertebrae out of place, neuropathy, DJD, and sciatica, and have had one hip joint replaced and now I have a torn meniscus that needs repaired. I also have diabetes which complicates things. So I was wondering if anyone has had any success with the neuropathy pain management.

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You are a really strong person to manage all of that for so many years. I'm hoping for the best for you.

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@heisenberg34

Jenny, I could be you writing about your sessions with pain management. My visits are mainly to get my pain pump adjusted or refilled. "Pain management" seems to be a misnomer. As you mentioned, the doc asks how you are (as does mine), then writes or types. In the eight months that I have been visiting my current "Pain management specialist", he has not once mentioned a possible different road to finding out why the pain pump is not providing relief. I finally said to him at our last session, "Don't you have a network of colleagues that you could reach out to and discuss my case. So far you have not been able to really help me". He finally said that he did know someone whom he does reach out to periodically and will speak to him about my baffling case. I go back to him next week. Any bets as to whether he actually spoke about my case to him?
I became more proactice recently, learning that I have to become my own, best advocate. I just had my old spinal cord stimulator removed since it had stopped working three years ago. Any guesses as to who made this decision? Yes, I did. Maybe you need to be a little more firm your pain doc. After all, she supposedly works for you. Ask her to reach out to her colleagues as I did. Worth a try. Right? I wish you all the best.

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It appears after the usual spinal shots, gabapentin and other couple more related meds, the pain mgt docs seem to just walk away without being able to reduce the pain. Perhaps, the major problem is that perhaps chronic pain is difficult to treat. For now, I am relying on physical therapy and a device called Softwave, TRT. The Softwave device appears to be working most of the time by providing me with a couple of days of pain relief.

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Hello…my name is Sharon. I’ve been in pain management off & on for a number of years.
I have fibromyalgia, Sjogren’s Syndrome, osteoporosis, osteoarthritis & chronic migraines.
I’m not taking any pain medication (except aspirin or Advil) at this point as I’m approaching another knee replacement.
I lost my partner three years ago as they died while sleeping. I then lost our pup of 14.5 years with heart problems & then cancer.
The extreme grief & stress has caused many flares from the Sjogren’s, I’ve had more migraines & my heart is having its own issues. I will be going back on pain meds when I have my knee replacement.
I struggle knowing whether to continue taking the medications living alone or being in miserable pain.
My family have all passed except for a brother who is too busy with his own life & family. I just feel extremely alone & don’t want to be accused of self-medicating when I truly use the medication due to severe pain.
Any suggestions on how best to handle the situation?

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In my experience after my total knee replacement narcotics did not help with my pain so only took a few. The best pain relief for me was the anti inflamatory medication, and the ice cryo cuff machine and walking. Physical therapy continued in therapist office day after I got home. It was just so great to walk without prepain surgery. I did 6 weeks pt prior to surgery to strengthen muscles I would need to be strong. Sleeping was issue for me with pain but after almost 4 months it was ok. Remember it is hard work find a good therapist. Hopefully you find a support therapy group to help you get through your grief, it’s a lot to deal with. Best of luck to you.

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Hello,

I'm new to the group here. I don't know if I will find the help I need. I moved here from Colorado last December so I could hopefully have one or two knee surgeries. What I didn't count on is Mayo and their anti opioid attitude. My pain treatment plan was working just fine for me. Now I'm being forced off one of my meds and it's greatly reduced my quality of life. I can't engage in exercise because I can't bend my right leg. I guess I would like to know if anyone has found anywhere else in the Twin Cities to go to or has anyone had any luck with edibles, either THC or CBD. I've not tried it. Also, has anyone had luck with Suboxone. Thanks in advance. Maybe I'll be helpful to someone else. I'm also a nurse so that comes in handy.

Glad to meet everyone!

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@smc55

Hello…my name is Sharon. I’ve been in pain management off & on for a number of years.
I have fibromyalgia, Sjogren’s Syndrome, osteoporosis, osteoarthritis & chronic migraines.
I’m not taking any pain medication (except aspirin or Advil) at this point as I’m approaching another knee replacement.
I lost my partner three years ago as they died while sleeping. I then lost our pup of 14.5 years with heart problems & then cancer.
The extreme grief & stress has caused many flares from the Sjogren’s, I’ve had more migraines & my heart is having its own issues. I will be going back on pain meds when I have my knee replacement.
I struggle knowing whether to continue taking the medications living alone or being in miserable pain.
My family have all passed except for a brother who is too busy with his own life & family. I just feel extremely alone & don’t want to be accused of self-medicating when I truly use the medication due to severe pain.
Any suggestions on how best to handle the situation?

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Hi Sharon.

You say another knee replacement, is this the other knee or a revision? Knee replacement is partly how I ended up on pain meds. I've had 10 surgeries on my right knee and now need a left knee replacement. Who are you concerned about that will accuse you of self-medicating? If it is someone not familiar with pain the best thing you can do is educate them. Tell them what the pain is like and how it affects your life. I don't know that the same approach would work with a health care provider. My doctor didn't seem to care at all how low my quality of life was.
I understand feeling alone. Having just moved to Minnesota six months ago and not knowing anyone, it's very hard. I go online to chat with people. Any possible way you can connect with people who will be understanding. It helps lessen the loneliness I've found.
I don't know if that helps any but I wanted to let you know someone was listening and understands.
Hugs 🤗
Patti

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@orygun66

Hello,

I'm new to the group here. I don't know if I will find the help I need. I moved here from Colorado last December so I could hopefully have one or two knee surgeries. What I didn't count on is Mayo and their anti opioid attitude. My pain treatment plan was working just fine for me. Now I'm being forced off one of my meds and it's greatly reduced my quality of life. I can't engage in exercise because I can't bend my right leg. I guess I would like to know if anyone has found anywhere else in the Twin Cities to go to or has anyone had any luck with edibles, either THC or CBD. I've not tried it. Also, has anyone had luck with Suboxone. Thanks in advance. Maybe I'll be helpful to someone else. I'm also a nurse so that comes in handy.

Glad to meet everyone!

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Hello @orygun66, Welcome to Connect. Sorry to hear you are struggling with pain. I had steroid shots in my knee for several years prior to getting a knee replacement so can relate a little to what you are going through. There are members who have shared experiences with THC, CBD and Suboxone. You might find it helpful to browse through the following search results.

THC, CBD related - https://connect.mayoclinic.org/search/discussions/?search=THC%20and%20CBD
Suboxone - https://connect.mayoclinic.org/search/discussions/?search=%20Suboxone

@artscaping may have some suggestions on THC or CBD edibles along with other alternatives.

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