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.

@mamacita

Hello,@summertime4, Mamacita here , aka Jane. I tried to do a little bit of investigative work here before giving you an answer.

I live in North Alabama, and we, unfortunately, have the dubious distinction of having one of the highest opiate consumptions per capita in the nation.

Hydrocodone works great for me. But neither the Rheumatologist nor the PCP will prescribe it for me. This was at my request. From many years ago.

Hydrocodone affects perception. I told the medical folks not to prescribe anything for me that might affect my ability to drive, make decisions, or care for our precious Grandchild.

Little did I know back then, in the 90's, that Fibromyalgia would get progressively worse. I have come to regret that decision.

But in this environment of drug users, drugs are frequently used in ways that they were not prescribed. I have heard of people injecting or smoking or huffing just about every drug you can imagine.

I have not located any articles to back that up.yet. But I will be looking for them. I did look at an article by Ramsey Archibald, @al.com. Where the opioid epidemic hit Alabama hardest. Two counties that have the most drugs in the state are a short drive from my door.

Foster care numbers are at an all time high. Families are torn apart. Children don't know who they can trust anymore. Enabling seems to be the name of the game. But someone with diabetic neuropathy and severe Fibromyalgia like me, well, I have to be convincing to the medical establishment so that they understand I really am in as much pain as I say I am.

To be fair, they do not wish to get in trouble themselves. Around this town, one of the high schools was known as the "pill" school. The other the "alcohol" school. I personally knew of a Sunday School class that refused to have their social at my friend's house because alcohol would not be on the menu .

I hope I have answered at least some of your questions. Thankfully, the medicines that truly help us are not as difficult to procure in your part of the country. May it remain so.

Mamacita

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Wow! Such awful stuff to hear. Breaks my heart and I feel very fortunate to have responsible access to the medical assistance and medication I need. So sad to know that the bad people and situations ruin it for the those deserving and in need.

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Hi. I have been on Lyrica since it's trial @ HSS. Approximately 2008. I have never suffered any side effects except those on my wallet. Now that there is a generic, that costs way less, Medicare won't approve it!

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@lioness

@mamacita What are they doing to us who need these drugs. Ridiculous I'm going to see my pain Dr. tomorrow and talk to him . I,ve been taking supplement also for the fibro but they aren't working as well any more.

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Dearest @lioness, I hope and pray that my situation is only a local one. My town is not a booming metropolitan area. I have studied a bit about the subject regarding doctors who have complicated patients. I am complicated. It has taken me many years to learn how to obtain proper medical care.

I'm hoping that you and I both will do just fine. We will be good patients and good consumers. We will advocate where necessary.

Love and light,
Mamacita Jane

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@mamacita

@jim, Alumni Mentor. I hope you have not suffered any dangerous complications with Lyrica. You mentioned that you had to be hospitalized for several days. I went back to see what were some side effects and was reminded that there are some serious ones, indeed.

All medications have side effects. Even serious ones rarely happen. But when they do we must be strong and take whatever steps necessary to guard our health.

If I could have received pain relief from the supplements I was taking, I would gladly have continued taking them. Sometimes they just stop working for no particular reason.

Saying a prayer for you and all of us who work so hard to maintain our health.

Mamacita Jane

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@mamacita
The day that the Lyrica disaster hit, we were meeting with the financial advisor and I think I said some weird things. Then we had lunch at one of our favorite joints in Bend, Oregon, and I couldn't eat. I just put my head on the table. My wife decided that we needed to go straight home. Fortunately she was driving. I would start a sentence and couldn't complete it. I became increasingly incoherent, had a fever and had no memory. When we went to the ER, my wife expressed her concern that I might have had a stroke. That brought a quick end to the check in. They got me in an ER room and put monitors on me. Then alarms went off when I went tachycardic. Things happened fast, but by the time they got me on a defibrillator, my heart rate went back to normal. That night I thought I was having a cardiac event, but we figured out that I was having a panic attack – awful things – because of the endotracheal tube. I've had those tubes in several times but this was the first time I had a panic attack.

So no more Lyrica. Bummer.

But I started taking Imipramine and I'm up to 75 mg and the neuropathy pain has gone down from 4-8 to 2-3. I'm going to step up to 100 mg tomorrow. I can walk through the stores all day and my feet hardly hurt! Unfortunately my BP went up when I started taking it, so I think it might be a drug interaction with any one of several meds. I have to play around with meds to find the culprit. I just hope it's not a medication that I really need. I was going to stop taking the Benadryl at bedtime tonight, but I thought about it as I was swallowing my nightly pills. But I'm going to enjoy the pain relief while it lasts.

Jim

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@jimhd

@mamacita
The day that the Lyrica disaster hit, we were meeting with the financial advisor and I think I said some weird things. Then we had lunch at one of our favorite joints in Bend, Oregon, and I couldn't eat. I just put my head on the table. My wife decided that we needed to go straight home. Fortunately she was driving. I would start a sentence and couldn't complete it. I became increasingly incoherent, had a fever and had no memory. When we went to the ER, my wife expressed her concern that I might have had a stroke. That brought a quick end to the check in. They got me in an ER room and put monitors on me. Then alarms went off when I went tachycardic. Things happened fast, but by the time they got me on a defibrillator, my heart rate went back to normal. That night I thought I was having a cardiac event, but we figured out that I was having a panic attack – awful things – because of the endotracheal tube. I've had those tubes in several times but this was the first time I had a panic attack.

So no more Lyrica. Bummer.

But I started taking Imipramine and I'm up to 75 mg and the neuropathy pain has gone down from 4-8 to 2-3. I'm going to step up to 100 mg tomorrow. I can walk through the stores all day and my feet hardly hurt! Unfortunately my BP went up when I started taking it, so I think it might be a drug interaction with any one of several meds. I have to play around with meds to find the culprit. I just hope it's not a medication that I really need. I was going to stop taking the Benadryl at bedtime tonight, but I thought about it as I was swallowing my nightly pills. But I'm going to enjoy the pain relief while it lasts.

Jim

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@jimhd So glad to hear your heart is better . You want to stay that way. Does Imipramine act like Lyrica? Never heard of that drug. What ever you can take for pain relieve is what we all want.

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@lioness

@jimhd So glad to hear your heart is better . You want to stay that way. Does Imipramine act like Lyrica? Never heard of that drug. What ever you can take for pain relieve is what we all want.

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@lioness Imipramine is for depression, but is prescribed for other things. I think it's a cousin of amitriptyline.

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@jimhd

@lioness Imipramine is for depression, but is prescribed for other things. I think it's a cousin of amitriptyline.

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Hi @lioness,
@jimhd is right. It is an older form of anti-depressants called tricyclic antidepressant. Other names are Tofranil and Tofranil-PM. Many of these older anti-depressants were used to treat not only depression but are also used for pain. Here is a link to a website where you can find out more about this drug, https://www.drugs.com/mtm/imipramine.html

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@captainmidnight

Good afternoon, my name is Tom

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Hello Tom (@captainmidnight). If you are comfortable sharing, what has brought you to the Chronic Pain group?

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Hi , Jamie here, my husband has chronic neck/back pain that burns down to his numb feet . His pain doctor wants to do stem cell injection therapy. Has anyone here tried this ?

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@jmcamden9687 Good evening. What was the cause of your initial neck/back pain? Was the diagnosis in any way different from what you expected? How did the pain doctor explain the anticipated results? I would like to call on @johnbishop to send you the latest links to stem cell injection therapy results. Have a peaceful night. Chris

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Hello @jmcamden9687 — I would like to add my welcome to Connect along with @artscaping and other members. I don't know of any success stem cell treatment/therapy for any autoimmune disease but there is a good discussion for neuropathy that you might be interested in reading through to see what others have discussed. Normally it's not covered by insurance. Also I don't think there have been any clinical trials or FDA approval for any of these types of treatments so it's good to do a lot of research.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Would your husbands doctor being doing the stem cell injections in a smaller local clinic or is it a major medical facility?

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I will call myself Guga, I am in pain from the minute I step foot off of my bed to the minute I get back into it. I have no pain meds due to the new laws and fears of providers. I have gained 80 lbs, and am miserable. I have seen the drs in several places but no one cares about someone like me.

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@guga

I will call myself Guga, I am in pain from the minute I step foot off of my bed to the minute I get back into it. I have no pain meds due to the new laws and fears of providers. I have gained 80 lbs, and am miserable. I have seen the drs in several places but no one cares about someone like me.

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@guga Welcome to Mayo Connect. We are a very diverse and caring group of people, some of us patients, some of us caregivers, some of us family members. We share our experiences to support and assist others on their own individual journeys. We do not diagnose nor can we offer medical advice. If you are comfortable, will you tell us about the type of pain your are experiencing, and any remedies you have tried? Is there a cause to this pain? Are you able to do any type of exercise that might make you feel better and ease the pain? We would like to be able to offer you support, but need a few more details!
Ginger

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@johnbishop

Hello @jmcamden9687 — I would like to add my welcome to Connect along with @artscaping and other members. I don't know of any success stem cell treatment/therapy for any autoimmune disease but there is a good discussion for neuropathy that you might be interested in reading through to see what others have discussed. Normally it's not covered by insurance. Also I don't think there have been any clinical trials or FDA approval for any of these types of treatments so it's good to do a lot of research.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Would your husbands doctor being doing the stem cell injections in a smaller local clinic or is it a major medical facility?

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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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@gingerw

@guga Welcome to Mayo Connect. We are a very diverse and caring group of people, some of us patients, some of us caregivers, some of us family members. We share our experiences to support and assist others on their own individual journeys. We do not diagnose nor can we offer medical advice. If you are comfortable, will you tell us about the type of pain your are experiencing, and any remedies you have tried? Is there a cause to this pain? Are you able to do any type of exercise that might make you feel better and ease the pain? We would like to be able to offer you support, but need a few more details!
Ginger

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@guga , welcome to Mayo Clinic Connect. I just read your post regarding the intense level.of pain that you experience continually. I am not a medical practioner, and therefore cannot diagnose or advise.

However, I am a patient, a friend, a caregiver, and someone who has dealt with Chronic pain for many years. I am a Volunteer Mentor here at Mayo Clinic Connect.

May I ask, can you discern or pinpoint where this pain is coming from? Are you able to tell whether it is in your joints, in your bones, in your muscle tissues, or all of the above?

Have you considered keeping a journal of your pain experiences? Pain can be dull, throbbing , sharo, cutting, or aching. Pain can travel or stay in primarily one spot. Different circumstances can affect pain levels. How is your sleep? Does your pain wake you up at night? Do you feel rested when you wake up in the morning? Has anyone ever suggested you might have sleep apnea?

Keeping a record of all your symptoms might enable your medical team to discover patterns in your health, that could lead to proper testing, and hopefully a proper diagnosis.

Through the years, I have found in my case that the more information I can give my PCP, the closer to an accurate diagnosis and treatment we get.

Many people just have a little notebook where they write down all that is going on, day by day. I find that it helps me to track everything going on with my body.

I hope that we have given you some glimmer of hope here. And that you will come back to visit us any time you have a chance to do so. We are here for you. I will be keeping you in my hopes and prayers. You deserve to be free from pain.

Mamacita Jane

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