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

Good morning everyone. My name is Jane, also known as Mamacita over on the Spectrummy page here on Mayo Clinic Connect. I felt like I needed to re-introduce myself due to my somewhat long absence from Connect.

I try to manage the kinds and amount of work that I do everyday so as to conserve the strength that I do have. DDD, Spinal Stenosis, Osteoarthritis, and Fibromyalgia try to slow me down with their flares and pain.

They had actually done quite a number on me, before I realised that I desperately needed to make changes. Now I am on generic Lyrica at night, along with Flexeril, as needed. The Fibro pain is gone, only the Arhritis to deal with. PT and warm pool therapy to follow.

My confidence level sank to an all time low during this time. I hesitated to write anything here. Took me a long time to realize that it was important that I reach out to the very people who had listened to me and encouraged me before.

Pain is a thief. Instilled in us all is a need for community to help one another, in large and small ways. This is my community. Thankful to be back.

Mamacita Jane

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@mamacita Hi Mamacita Jane, I’m so sorry that you are “bogged down”with pain. I was going to write “suffer” but I decided that I need to get out of that mindset. Thankful that Lyrica and Flexeril are helping. I can’t take Lyrica – it made me unable to speak clearly with memory loss (I even forgot my dog’s name). I have fibromyalgia and rheumatoid arthritis. I recently moved and have to wait 4 months before I can get in to see a rheumatologist here. My RA has gotten much worse. I just can’t believe what a shortage of rheumatologists there is. Your writings about community are spot on. We all need each other. I’m glad you have found something that has helped the fibro pain and that you are back! ………….Karen

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@karen00

@mamacita Hi Mamacita Jane, I’m so sorry that you are “bogged down”with pain. I was going to write “suffer” but I decided that I need to get out of that mindset. Thankful that Lyrica and Flexeril are helping. I can’t take Lyrica – it made me unable to speak clearly with memory loss (I even forgot my dog’s name). I have fibromyalgia and rheumatoid arthritis. I recently moved and have to wait 4 months before I can get in to see a rheumatologist here. My RA has gotten much worse. I just can’t believe what a shortage of rheumatologists there is. Your writings about community are spot on. We all need each other. I’m glad you have found something that has helped the fibro pain and that you are back! ………….Karen

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Hi, @karen00, I am so sad to hear of your recent RA experience. One of my dearest friends has that. We try to build one another up. Accentuate the positive. While at the same time, keeping it real.

Yes, indeed. Lyrica has its drawbacks. For me, I have to work at least five times as hard to keep up with a schedule that really shouldn't be that difficult.
I'm retired, and I am my own boss. That's my problem. I have so many interests and responsibilities that I feel pressured to do it all.

We CAN'T do it all. Never could. Not even when we were young and healthy.

Grateful to be here, chronic pain and all. It may be a roller coaster ride, but at least I get to show up. Meanwhile, let's talk it up amongst the medical students and point them towards Rheumatology! ( as I am presently without one, myself.)

Hope to see you around again soon!
Mamacita

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@mamacita

Hi, @karen00, I am so sad to hear of your recent RA experience. One of my dearest friends has that. We try to build one another up. Accentuate the positive. While at the same time, keeping it real.

Yes, indeed. Lyrica has its drawbacks. For me, I have to work at least five times as hard to keep up with a schedule that really shouldn't be that difficult.
I'm retired, and I am my own boss. That's my problem. I have so many interests and responsibilities that I feel pressured to do it all.

We CAN'T do it all. Never could. Not even when we were young and healthy.

Grateful to be here, chronic pain and all. It may be a roller coaster ride, but at least I get to show up. Meanwhile, let's talk it up amongst the medical students and point them towards Rheumatology! ( as I am presently without one, myself.)

Hope to see you around again soon!
Mamacita

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I take Lyrica at night because it makes me sleepy and I don't want to be sleepy during the day. I take gabapentin during the day — it is similar to Lyrica but it doesn't make me sleepy. I've always been a 'type A dynamo' but now I'm slowing down so I do as much as I can. I'm sorry that you have RA; my mother in law had it – it was very painful. I hope you find remedies. Peggy

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@pfbacon

I take Lyrica at night because it makes me sleepy and I don't want to be sleepy during the day. I take gabapentin during the day — it is similar to Lyrica but it doesn't make me sleepy. I've always been a 'type A dynamo' but now I'm slowing down so I do as much as I can. I'm sorry that you have RA; my mother in law had it – it was very painful. I hope you find remedies. Peggy

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I have tried gabapentin two times. It messed up my mind and did not help at all for any of the pains I experience. Four Advils help but they kill the kidneys. Using Advils I will die sooner but without most of the pain. Opioids do not help the pains and messes up my mind. So where do we go from here? ,I have RA and PsA and chronic venus insufficiency and alsoaa few others. When two of them attack at the same time it is horror.

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I want to start a new post entitled “ SIDE EFFECTS “
I was told by the makers of Tramodol that if one person complains about something that complaint needs to be listed. Some of the the commercials on TV these days have speed readers stating all of the possible side effects. I’m aware of 2 comedy routines about side effects from medications that are < IMHO > well done and a few pharmacists with a sense of should add them to the rx order. If laughter is “ the best medicine “ then let’s make each other lag as often as possible
A priest a minister and a rabbit hopped into a bar one day….

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@mamacita

Hi, @karen00, I am so sad to hear of your recent RA experience. One of my dearest friends has that. We try to build one another up. Accentuate the positive. While at the same time, keeping it real.

Yes, indeed. Lyrica has its drawbacks. For me, I have to work at least five times as hard to keep up with a schedule that really shouldn't be that difficult.
I'm retired, and I am my own boss. That's my problem. I have so many interests and responsibilities that I feel pressured to do it all.

We CAN'T do it all. Never could. Not even when we were young and healthy.

Grateful to be here, chronic pain and all. It may be a roller coaster ride, but at least I get to show up. Meanwhile, let's talk it up amongst the medical students and point them towards Rheumatology! ( as I am presently without one, myself.)

Hope to see you around again soon!
Mamacita

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@mamacita Hi I haven't posted to you in awhile but follow our same fibromyalgia problems. I'm sorry you where miserable with the recent flare right after you had one I had one . I'm in the same boast as Karen00 rheumatologist are pretty non existent here . Right now my PCP gave me a Medrol pack and said take when I need it . I want to go back on Lyrica but she wont give me a script for it so guess have to see my pain Dr. and talk to him maybe he can ?

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@lioness

@mamacita Hi I haven't posted to you in awhile but follow our same fibromyalgia problems. I'm sorry you where miserable with the recent flare right after you had one I had one . I'm in the same boast as Karen00 rheumatologist are pretty non existent here . Right now my PCP gave me a Medrol pack and said take when I need it . I want to go back on Lyrica but she wont give me a script for it so guess have to see my pain Dr. and talk to him maybe he can ?

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Yes,@lioness, Gabapentin is considered a street drug now. A narcotic, or the kind of medicine that cannot be called in. One has to have a prescription and deliver it to the pharmacy to be filled.

Lyrica is in the same category. There are side effects and I am having to learn how to deal with them. I cannot subject my family or my self to the level of pain that I endured this last go round. I cannot go back.

My city is about fifty thousand or so. The Rheumatologists here do not appear to be very willing to help people with Fibromyalgia. It's almost as if they too think it is all in the patients mind, that it is one of those "fashionable" chronic illnesses….

It is very difficult to find someone who will take you seriously here. I don't want to go to UAB, because it is over an hour's drive one way just to get there.

Thank God my CRNP believed me when I told her I wanted to get back on Lyrica and Flexeril at night. She was happy to write me prescriptions for both. I had gotten off both of them because I was tired of taking medicine for every single thing. I was taking supplements and had a decent measure of success. But out of the blue, nothing worked.

With Fibromyalgia, you never know how long the "run" will last. In the meantime, I will do all I can to stay as healthy as possible.

It was a delight to hear from you. Let's do this again!

Mamacita

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captainmidnight

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@mamacita Just read your post saying that gabapentin is now a scheduled drug as is lyrica,, What State are you, I have read this in other posts, Why is gabapentin and lyrica taking this turn, My doctor and pain doctor kind of push for the gabapentin for my neuropathy, fibromyalgia and mortons neuroma, My pain doctor just called in the gabapentin and oxycodone, I will have to show ID for the oxycodone, My word, what is happening out there to question gabapentin and lyrica I was an addiction counselor for 28 years, retiring 7 years ago, I had never seen or heard of those two drugs being sought after, Many people with medical issues find relief with gabapentin and/or lyrica, I am surprised I have heard no problems with pain management prescribing oxycodone, When a medication is used for it's intention and is monitored there should not be a problem, Unfortunately there is abuse with so much out there and I certainly understand, but it is sad that for those who are helped by the medication must also suffer, I believe every one should be cared for on an individual basis, There will ALWAYS be drugs abused no matter what restrictions are placed, but for many, such as me, I am taking a medication and not abusing a drug, I live in Maryland, I am so glad they didn't take Tide pods off the market after it was found kids were eating them to get "Who the hell knows"

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@lioness

@mamacita Hi I haven't posted to you in awhile but follow our same fibromyalgia problems. I'm sorry you where miserable with the recent flare right after you had one I had one . I'm in the same boast as Karen00 rheumatologist are pretty non existent here . Right now my PCP gave me a Medrol pack and said take when I need it . I want to go back on Lyrica but she wont give me a script for it so guess have to see my pain Dr. and talk to him maybe he can ?

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@lioness I don't understand why the doctor wouldn't prescribe Lyrica. Your pain specialist should be able to help. Did your doctor give his reason for refusing to prescribe?

I was gradually increasing my dosage of Lyrica when all of the sudden I had such a reaction I was in the hospital for 3 days. The bummer is that it was helping my neuropathy pain.

Jim

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@mamacita

Yes,@lioness, Gabapentin is considered a street drug now. A narcotic, or the kind of medicine that cannot be called in. One has to have a prescription and deliver it to the pharmacy to be filled.

Lyrica is in the same category. There are side effects and I am having to learn how to deal with them. I cannot subject my family or my self to the level of pain that I endured this last go round. I cannot go back.

My city is about fifty thousand or so. The Rheumatologists here do not appear to be very willing to help people with Fibromyalgia. It's almost as if they too think it is all in the patients mind, that it is one of those "fashionable" chronic illnesses….

It is very difficult to find someone who will take you seriously here. I don't want to go to UAB, because it is over an hour's drive one way just to get there.

Thank God my CRNP believed me when I told her I wanted to get back on Lyrica and Flexeril at night. She was happy to write me prescriptions for both. I had gotten off both of them because I was tired of taking medicine for every single thing. I was taking supplements and had a decent measure of success. But out of the blue, nothing worked.

With Fibromyalgia, you never know how long the "run" will last. In the meantime, I will do all I can to stay as healthy as possible.

It was a delight to hear from you. Let's do this again!

Mamacita

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@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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@jimhd

@lioness I don't understand why the doctor wouldn't prescribe Lyrica. Your pain specialist should be able to help. Did your doctor give his reason for refusing to prescribe?

I was gradually increasing my dosage of Lyrica when all of the sudden I had such a reaction I was in the hospital for 3 days. The bummer is that it was helping my neuropathy pain.

Jim

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@jimhd I don't know why she wouldn't prescribe it but I'm switching to a new health plan where they have a rheumatologist where I'm at now there is known. I also am seeing my pain Dr. Tues and talk to him

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@summertime4

@mamacita Just read your post saying that gabapentin is now a scheduled drug as is lyrica,, What State are you, I have read this in other posts, Why is gabapentin and lyrica taking this turn, My doctor and pain doctor kind of push for the gabapentin for my neuropathy, fibromyalgia and mortons neuroma, My pain doctor just called in the gabapentin and oxycodone, I will have to show ID for the oxycodone, My word, what is happening out there to question gabapentin and lyrica I was an addiction counselor for 28 years, retiring 7 years ago, I had never seen or heard of those two drugs being sought after, Many people with medical issues find relief with gabapentin and/or lyrica, I am surprised I have heard no problems with pain management prescribing oxycodone, When a medication is used for it's intention and is monitored there should not be a problem, Unfortunately there is abuse with so much out there and I certainly understand, but it is sad that for those who are helped by the medication must also suffer, I believe every one should be cared for on an individual basis, There will ALWAYS be drugs abused no matter what restrictions are placed, but for many, such as me, I am taking a medication and not abusing a drug, I live in Maryland, I am so glad they didn't take Tide pods off the market after it was found kids were eating them to get "Who the hell knows"

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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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Good afternoon, my name is Tom

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@jimhd

@lioness I don't understand why the doctor wouldn't prescribe Lyrica. Your pain specialist should be able to help. Did your doctor give his reason for refusing to prescribe?

I was gradually increasing my dosage of Lyrica when all of the sudden I had such a reaction I was in the hospital for 3 days. The bummer is that it was helping my neuropathy pain.

Jim

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@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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