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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.

Mamacita, Alumna Mentor | @mamacita | Sep 25, 2019
In reply to @guga "I have tried everything from heat to cold 2 gabapentin which made my heart race Tramadol..." + (show)
@guga

I have tried everything from heat to cold 2 gabapentin which made my heart race Tramadol did nothing Tylenol I'm allergic to ibuprofen I go for a walk I have to come right back play with the dogs outside garden I've even gotten a bike and I take three or four seconds on it and come back and every day I try to do a little bit more I also stretch every morning I'm now eating healthier trying to lose some of the weight because I've gained so much weight over the past two years I've gained 80 lb this does not help me and now I'm trying to find a provider that can help me with a gastro problem 2

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Oh, my, @guga. How did this happen? Bless Your heart. With these findings, there is much to be done.

I am so sorry to hear about this. I have multiple disc issues myself, and spinal stenosis as well. I certainly understamd the pain you are in.

Would the hospital in Rochester be closer to you than the satellite campuses?

I hope that you will consider making an appointment with Mayo Clinic. I know that they can help you.

In the meantime, I'm all ears! Take good care, dear. And rest up. Love and light to you!

Mamacita Jane

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 25, 2019
In reply to @guga "I have tried everything from heat to cold 2 gabapentin which made my heart race Tramadol..." + (show)
@guga

I have tried everything from heat to cold 2 gabapentin which made my heart race Tramadol did nothing Tylenol I'm allergic to ibuprofen I go for a walk I have to come right back play with the dogs outside garden I've even gotten a bike and I take three or four seconds on it and come back and every day I try to do a little bit more I also stretch every morning I'm now eating healthier trying to lose some of the weight because I've gained so much weight over the past two years I've gained 80 lb this does not help me and now I'm trying to find a provider that can help me with a gastro problem 2

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@guga You certainly have your plate full, don't you? I hope your doctor has considered referring you to a rheumatologist for the arthritis, and I am wondering if physical therapy would help at all? Gentle yoga and stretching seems to help, as well. Good for you for pushing yourself a little bit more each day! Like @mamacita said, keeping a journal of the pain, or making a chart of your symptoms, will be of use to both you and your doctors.
Ginger

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 26, 2019

@guga

I think I'll save your post about all of the back, hip, pelvis, and leg pain, and read it when my pain level is up. It will make my pain feel insignificant. I know from experience how painful back pain can be.

I have collapsed on the lawn and deck steps and in the house when out of the blue my right leg suddenly turns to jello. It's pretty scary. I'm fortunate that it hasn't injured me.

I was 55 when I had to retire and start living on Social Security with disability. Medicare has been a Godsend for me. Blue Cross premiums were crazy high. If you're on Medicare, you should be seeing a health professional who will advocate for you, to begin treating your pain. ER shouldn't be your only source of pain medication.

I'm very pleased with the team of doctors who treat me - my PCP, neurologist, pain specialist, orthopedist and various others. When I retired we moved from a tiny town (population 247) that was 3 hours from medical services to a place where I can see just about any kind of doctor within 50 miles. Are doctors accessable to you? Is your PCP happy to refer you to specialists? I know that not all of them want to do that.

When you see your doctor, be sure to be clear about your level of pain. I make a list of things to talk about because if I don't, I remember 2 or 3 things after I leave the clinic. It never fails!

I write in a journal every night, and I rate my day on a scale of one to ten. For depression, ten would be the best day in my life. For pain, it usually fluctuates, so I write the range, from 4-8 or 2-5. The doctors always ask me how the pain has been, and I can tell them what the range has been.

It sounds like a lot of surgeries would be required to treat your spinal problems. Is that something you would consider? Have your doctors talked with you about your options? Do you have access to a physical therapist? Sorry for all the questions. I guess I'm just most. I'm impressed with your will to keep moving. I hope that you soon will find some relief.

Jim

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2 replies
guga | @guga | Sep 26, 2019
In reply to @jimhd "@guga I think I'll save your post about all of the back, hip, pelvis, and leg..." + (show)
@jimhd

@guga

I think I'll save your post about all of the back, hip, pelvis, and leg pain, and read it when my pain level is up. It will make my pain feel insignificant. I know from experience how painful back pain can be.

I have collapsed on the lawn and deck steps and in the house when out of the blue my right leg suddenly turns to jello. It's pretty scary. I'm fortunate that it hasn't injured me.

I was 55 when I had to retire and start living on Social Security with disability. Medicare has been a Godsend for me. Blue Cross premiums were crazy high. If you're on Medicare, you should be seeing a health professional who will advocate for you, to begin treating your pain. ER shouldn't be your only source of pain medication.

I'm very pleased with the team of doctors who treat me - my PCP, neurologist, pain specialist, orthopedist and various others. When I retired we moved from a tiny town (population 247) that was 3 hours from medical services to a place where I can see just about any kind of doctor within 50 miles. Are doctors accessable to you? Is your PCP happy to refer you to specialists? I know that not all of them want to do that.

When you see your doctor, be sure to be clear about your level of pain. I make a list of things to talk about because if I don't, I remember 2 or 3 things after I leave the clinic. It never fails!

I write in a journal every night, and I rate my day on a scale of one to ten. For depression, ten would be the best day in my life. For pain, it usually fluctuates, so I write the range, from 4-8 or 2-5. The doctors always ask me how the pain has been, and I can tell them what the range has been.

It sounds like a lot of surgeries would be required to treat your spinal problems. Is that something you would consider? Have your doctors talked with you about your options? Do you have access to a physical therapist? Sorry for all the questions. I guess I'm just most. I'm impressed with your will to keep moving. I hope that you soon will find some relief.

Jim

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Thanks Jim you made me feel better I know I have a lot of pain and you're right the ER as my only source of pain relief apparently nobody wants to deal with pain medicine and the other thing.
my PCP well he retired he says he can't treat patients in the United States so he'd rather go back to his own country I'm still on the verge of looking for another PCP but none of them have seen so far to care about the level of pain in my body I guess because they don't feel my pain but a nobody else does. I headed to the Mayo Clinic as my last resort and no I am not retired I didn't know I haven't even thought about it I'm a certified licensed interpreter and own my own business at least whatever is left of it at this time most of my money has gone to providers that did absolutely nothing for me are told me it was in my head or heartburn sad but true so I am still in search of a good pcp
I have a pain specialist here he did give me medication because that is what was ordered hello CVS put my retired doctor's name on the medication by mistake and he defiled my documentation so that I could no longer get any medication I laughed at him when he put me in a back room and told me I was out drug shopping and I couldn't understand even what that meant and then when he mentioned the doctor's name I started to laugh because he is retired him and his wife and he is now on the board of the hospital in our town but whatever I must have embarrassed him that much that he blackballed me so I haven't had regular pain medicine in 2 years and when I finally can get even five days worth I make them last along with adding he and Kohl's trying to stretch and pretending it doesn't hurt yes doesn't really work well but I try I hope that my problems make you feel better LOL

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1 reply
guga | @guga | Sep 26, 2019
In reply to @gingerw "@guga You certainly have your plate full, don't you? I hope your doctor has considered referring..." + (show)
@gingerw

@guga You certainly have your plate full, don't you? I hope your doctor has considered referring you to a rheumatologist for the arthritis, and I am wondering if physical therapy would help at all? Gentle yoga and stretching seems to help, as well. Good for you for pushing yourself a little bit more each day! Like @mamacita said, keeping a journal of the pain, or making a chart of your symptoms, will be of use to both you and your doctors.
Ginger

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Thank you Ginger...

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 26, 2019
In reply to @guga "Thanks Jim you made me feel better I know I have a lot of pain and..." + (show)
@guga

Thanks Jim you made me feel better I know I have a lot of pain and you're right the ER as my only source of pain relief apparently nobody wants to deal with pain medicine and the other thing.
my PCP well he retired he says he can't treat patients in the United States so he'd rather go back to his own country I'm still on the verge of looking for another PCP but none of them have seen so far to care about the level of pain in my body I guess because they don't feel my pain but a nobody else does. I headed to the Mayo Clinic as my last resort and no I am not retired I didn't know I haven't even thought about it I'm a certified licensed interpreter and own my own business at least whatever is left of it at this time most of my money has gone to providers that did absolutely nothing for me are told me it was in my head or heartburn sad but true so I am still in search of a good pcp
I have a pain specialist here he did give me medication because that is what was ordered hello CVS put my retired doctor's name on the medication by mistake and he defiled my documentation so that I could no longer get any medication I laughed at him when he put me in a back room and told me I was out drug shopping and I couldn't understand even what that meant and then when he mentioned the doctor's name I started to laugh because he is retired him and his wife and he is now on the board of the hospital in our town but whatever I must have embarrassed him that much that he blackballed me so I haven't had regular pain medicine in 2 years and when I finally can get even five days worth I make them last along with adding he and Kohl's trying to stretch and pretending it doesn't hurt yes doesn't really work well but I try I hope that my problems make you feel better LOL

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Good morning to you. I'm so sorry to hear of your extensive pain.

Do you feel that you advocate for yourself?

The reason I ask is that no-one should live the way you describe. Who ordered your report? It is very detailed and it appears to me you should be with a spine Dr. Are you? Does your insurance allow you to contact a Dr on your own or do you need a referral?

If you are with a PM Dr. why can't they refer you to Rheumatology Spinal, Physical Therapy?

Maybe I'm missing something here. Please let me know if so. You deserve better and my opinion (not that you asked, haha)... is that you are being too nice and accepting things you dont need to accept right now.

All the best for a less painful day!
Rachel

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 26, 2019
In reply to @jmcamden9687 "Hi ,The pain Dr. would be doing stem cell injections. My husband needs a spinal decompression...." + (show)
@jmcamden9687

Hi ,The pain Dr. would be doing stem cell injections. My husband needs a spinal decompression. He has a MRI scheduled , but can't do the surgery until spring 2020. He was hoping to get a little relief between now and then. He doesn't take any pills for pain only marijuana.

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@jmcamden9687 -- If it were me, I would be asking the Dr. a lot of questions. Here's some information that may help.

Nine Things To Know About Stem Cell Treatments
-- https://www.closerlookatstemcells.org/stem-cells-medicine/nine-things-to-know-about-stem-cell-treatments/

FDA Warns About Stem Cell Therapies (Current as of Sept 3, 2019)
-- https://www.fda.gov/consumers/consumer-updates/fda-warns-about-stem-cell-therapies

Have you thought about Myofascial Release Therapy? There is a great discussion on the benefits and what it helps here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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guga | @guga | Sep 26, 2019
In reply to @rwinney "Good morning to you. I'm so sorry to hear of your extensive pain. Do you feel..." + (show)
@rwinney

Good morning to you. I'm so sorry to hear of your extensive pain.

Do you feel that you advocate for yourself?

The reason I ask is that no-one should live the way you describe. Who ordered your report? It is very detailed and it appears to me you should be with a spine Dr. Are you? Does your insurance allow you to contact a Dr on your own or do you need a referral?

If you are with a PM Dr. why can't they refer you to Rheumatology Spinal, Physical Therapy?

Maybe I'm missing something here. Please let me know if so. You deserve better and my opinion (not that you asked, haha)... is that you are being too nice and accepting things you dont need to accept right now.

All the best for a less painful day!
Rachel

Jump to this post

I have tried advocating for myself my sister in Christ went with me to the Mayo Clinic and that is where the results came from I saw a rheumatologist here in South Carolina who told me I did not have any arthritis all the tests were negative and I was perfect obviously not I have also seen four different spine specialist including Midlands orthopedics the spinal center here in Charleston all which said that I was in perfect health and that I should not be in any pain and that they were not going to give me any pain medication at this time because I didn't need any that's what led me to the Mayo Clinic as my last resort and there the pain medicine doctor try to get me into a 3-week program of mental health to learn how to deal with chronic pain so that I can have a better life but without medication I've already gone through the without medication issue and well not working so as I sit here and send you this I am sucking on my tears as I do every day when I think about all that I've been going through. I did go to a pain specialist here in South Carolina Pat Toomey health Center who gave me a pain shots in my spine or a pain injection and cause me to have severe pain and in bed for 3 days and would not answer my husband's call for assistance for 3 days matter fact is been 5 years and he's never called back

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 26, 2019
In reply to @guga "I have tried advocating for myself my sister in Christ went with me to the Mayo..." + (show)
@guga

I have tried advocating for myself my sister in Christ went with me to the Mayo Clinic and that is where the results came from I saw a rheumatologist here in South Carolina who told me I did not have any arthritis all the tests were negative and I was perfect obviously not I have also seen four different spine specialist including Midlands orthopedics the spinal center here in Charleston all which said that I was in perfect health and that I should not be in any pain and that they were not going to give me any pain medication at this time because I didn't need any that's what led me to the Mayo Clinic as my last resort and there the pain medicine doctor try to get me into a 3-week program of mental health to learn how to deal with chronic pain so that I can have a better life but without medication I've already gone through the without medication issue and well not working so as I sit here and send you this I am sucking on my tears as I do every day when I think about all that I've been going through. I did go to a pain specialist here in South Carolina Pat Toomey health Center who gave me a pain shots in my spine or a pain injection and cause me to have severe pain and in bed for 3 days and would not answer my husband's call for assistance for 3 days matter fact is been 5 years and he's never called back

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Thanks for breaking it down. Sometimes it helps others to be able to help you better.

My heart goes out to you indeed. Has anyone ruled out fibromyalgia, small fiber neuropathy?

It sounds as if many occurances heighten your pain. Are you able to continue with mental health support where you live? I have seen a Chronic Pain Management physchologist and you may benefit from continued care in this area. Do you have current access?

Have you ever been on medication to help with depression and/or anxiety? That may be the first step while continuing to search and learn about your pain.

You know this forum is a huge support system so if nothing else...you can vent, cry, complain, learn, compare, research or even share happy news here when you have it. Hoping you find some light in your day today. 🌞

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 26, 2019
In reply to @guga "I have tried advocating for myself my sister in Christ went with me to the Mayo..." + (show)
@guga

I have tried advocating for myself my sister in Christ went with me to the Mayo Clinic and that is where the results came from I saw a rheumatologist here in South Carolina who told me I did not have any arthritis all the tests were negative and I was perfect obviously not I have also seen four different spine specialist including Midlands orthopedics the spinal center here in Charleston all which said that I was in perfect health and that I should not be in any pain and that they were not going to give me any pain medication at this time because I didn't need any that's what led me to the Mayo Clinic as my last resort and there the pain medicine doctor try to get me into a 3-week program of mental health to learn how to deal with chronic pain so that I can have a better life but without medication I've already gone through the without medication issue and well not working so as I sit here and send you this I am sucking on my tears as I do every day when I think about all that I've been going through. I did go to a pain specialist here in South Carolina Pat Toomey health Center who gave me a pain shots in my spine or a pain injection and cause me to have severe pain and in bed for 3 days and would not answer my husband's call for assistance for 3 days matter fact is been 5 years and he's never called back

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@guga So many stories we hear here from people who have been blocked from getting the pain management they truly deserve, shows me that the people who do "drug shop" have ruined for the rest of us. While I can certainly see the opioid crisis is in need of regulating, it is frustrating, isn't it? I hope that with your documentation of what has happened to you, with you, you will be able to get some relief and help. Shopping for a new PCP is always difficult, made more stressful by having an existing problem. Perhaps friends and acquaintances could give you a few names of doctors they are pleased with, to help in your search? You may have to extend your area of search, if you can ambulate.
Ginger

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