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.

@janicedean

My name is Janice, I was diagnosed with Fibromyalgia in 2007. Since then I haven’t been able to work. I have been in constant pain. For the first 3 years I was able to manage with just physio, walking and vitamins. Then that wasn’t enough. I am on Tramadol 200mg SR 22x Daily, Paracetamol 500mg & Codeine 30mg 8x Daily. As soon as I try to do anything I’m in agony. My Rheumatologist hasn’t done a full physical examination for about a year as it is far too painful for me. I was on Targin 40/20 twice a day, was doing really well on until government said I couldn’t have it anymore. I have tried Methadone, Savella and Memantin. None of these have worked for me. The Fibromyalgia has left me a physical wreck.

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I get..”You smile all the time, you must not be in that much pain” REALLY? I say, it’s all about your attitude in life. Why walk around with a long face. Be glad you woke up today!”

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@alysebrunella

Hello and welcome to all of our new members, @sunshineme, @janicedean, @granny988, @hosta, @hemraj, and @lauriedr! We’re thrilled to have you all as part of the Chronic Pain group. And appreciate you sharing a little bit about yourself in this thread. I’d also like to introduce you all to existing members of the Chronic Pain group, @leh09, @19lin, @suebreen54, @ladyjane85, @briansr, @salena54, @sharonmay7, and @lolomarie.

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And me too! I joined yesterday.

@dawn_giacabazi

Hello @lauriedr
I can feel your frustration through your note. I have a little experience in life long issues. I also have seen many of patients with similar frustrations however I am no expert. I have found over the past couple years that sometimes it is in the best interested of the patient to simply wean them off everything and start over again. I know that is very difficult to hear but I wonder if this is what your doctors are thinking. Our bodies become so use to the drugs and treatments that they no longer effective. (Just like a patient losing weight, they hit a plateau and they need to change it up to kick start it again.)
It might be beneficial to discuss with your physicians PGx Testing. This would help them find the best most effective medications to treat your symptoms without going through all the different trial and error periods. Here is a link to Mayo Clinics PGx profiling. http://mayoresearch.mayo.edu/center-for-individualized-medicine/pgx-profile-service.asp

Please know you are in my thoughts and prayers.
Thanks
Dawn

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I read about the Pharmacogenetic testing recently here, asking my pain
management dr about doing it, but he told me to go to my principal dr., who
is a nephrologist. I could go to my neurologist bec have had reactions to
nearly 50 meds. Some have been so severe I have been hospitalized, so
remain in chronic pain. Reading Mayo clinic about it, most likely medicare
would not allow it, and cannot afford $3,000. It is something I believe I
need badly. Sad, I have lived 30+ years with such pain going from dr to
dr. Not worth living. ladyjane86

@ocangela

I’m Angela and I’ve just joined in. Had a car accident last Nov. has a fracture of L1 which the Drs let heal. That seems to have happened but I am let with conic pain in my middle back. Nothing short of Norco seems to help. I hate taking this every day. LOoking for other ways to manage

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to ocangela I too let compression fractures heal themselves, including
the last at T6 level – the worst. I will go to ER next time and get the
injection with cement put into fracture. Last time was the worst bec of
location. ladyjane86

@ocangela

I’m Angela and I’ve just joined in. Had a car accident last Nov. has a fracture of L1 which the Drs let heal. That seems to have happened but I am let with conic pain in my middle back. Nothing short of Norco seems to help. I hate taking this every day. LOoking for other ways to manage

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Hi Angela, I just joined in yesterday as well. I have Cervical stenosis, disc bulge, and bone spurs. I have done epidurals in which a mix of lidocane and steroids are injected. They worked for many years. In my lumbar spine, I had RFA–Radio Frequency Ablation done. That helped dramatically. Do you see pain management doctors?

@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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@hosta Nerve stimulator does nothing but tries to make your brain
believe the vibration and you will forget the real pain. Had to have mine
removed also. But for a long time, my body would vibrate without it…
ladyjane86

@janicedean

My name is Janice, I was diagnosed with Fibromyalgia in 2007. Since then I haven’t been able to work. I have been in constant pain. For the first 3 years I was able to manage with just physio, walking and vitamins. Then that wasn’t enough. I am on Tramadol 200mg SR 22x Daily, Paracetamol 500mg & Codeine 30mg 8x Daily. As soon as I try to do anything I’m in agony. My Rheumatologist hasn’t done a full physical examination for about a year as it is far too painful for me. I was on Targin 40/20 twice a day, was doing really well on until government said I couldn’t have it anymore. I have tried Methadone, Savella and Memantin. None of these have worked for me. The Fibromyalgia has left me a physical wreck.

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@hosta Oh do I know that comment – how good you look, how can you be in
pain – they would not withstand the chronic 8 to 9 level pain for 25+ years
I have lived within my back! ladyjane86

@hosta

I too am looking of ways to manage the pain. I hate taking this kind of medication especially when it doesn’t to that much good.!

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@hosta Procedures for nearly 30 years and nealy50 meds that do not good
or hospitalize me w/ such bad effects. I am in your boat and my heart
goes out to you. ladyjane86

@janicedean

My name is Janice, I was diagnosed with Fibromyalgia in 2007. Since then I haven’t been able to work. I have been in constant pain. For the first 3 years I was able to manage with just physio, walking and vitamins. Then that wasn’t enough. I am on Tramadol 200mg SR 22x Daily, Paracetamol 500mg & Codeine 30mg 8x Daily. As soon as I try to do anything I’m in agony. My Rheumatologist hasn’t done a full physical examination for about a year as it is far too painful for me. I was on Targin 40/20 twice a day, was doing really well on until government said I couldn’t have it anymore. I have tried Methadone, Savella and Memantin. None of these have worked for me. The Fibromyalgia has left me a physical wreck.

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I feel that people just get tired of hearing your troubles all the time. So I try to keep it to myself. I thank God that I have some understanding christian friends and family.

@ocangela

I’m Angela and I’ve just joined in. Had a car accident last Nov. has a fracture of L1 which the Drs let heal. That seems to have happened but I am let with conic pain in my middle back. Nothing short of Norco seems to help. I hate taking this every day. LOoking for other ways to manage

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I fell in July 2015. ER drs. said that I had internal bruising and that it would take time to get over it. I got where I couldn’t breath it hurt so bad that a chest x-ray was ordered. That is when they found I had 2 compression fractures. Then because of the stimulator they couldn’t do a MRI. They messed around and finally I went to the Doctor who injected the cement and fixed the first one. The first thing he did was remove the stimulator, ordered a MRI then said the compression (he found 4 factors ) had healed wrong and that there was nothing he could do. He said if he had gotten it shortly after the fall he could have fixed them. So….

@dawn_giacabazi

Hello @lauriedr
I can feel your frustration through your note. I have a little experience in life long issues. I also have seen many of patients with similar frustrations however I am no expert. I have found over the past couple years that sometimes it is in the best interested of the patient to simply wean them off everything and start over again. I know that is very difficult to hear but I wonder if this is what your doctors are thinking. Our bodies become so use to the drugs and treatments that they no longer effective. (Just like a patient losing weight, they hit a plateau and they need to change it up to kick start it again.)
It might be beneficial to discuss with your physicians PGx Testing. This would help them find the best most effective medications to treat your symptoms without going through all the different trial and error periods. Here is a link to Mayo Clinics PGx profiling. http://mayoresearch.mayo.edu/center-for-individualized-medicine/pgx-profile-service.asp

Please know you are in my thoughts and prayers.
Thanks
Dawn

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Hello @ladyjane85!!

We have done the testing on about 70 of our patients and only 2 had to pay out of pocket.

As long as the patient is on 2 or more medications treating 1 or more diagnosis then medicare has approved for the pharmacogenetic testing (cheek swab).

Mayo Clinic is much more in depth monecular profiling. They will work with you and your insurance providers.

@ocangela

I’m Angela and I’ve just joined in. Had a car accident last Nov. has a fracture of L1 which the Drs let heal. That seems to have happened but I am let with conic pain in my middle back. Nothing short of Norco seems to help. I hate taking this every day. LOoking for other ways to manage

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Yes I saw a pain management doctor. I had the injections and the RFA. Didn’t help!

Hi, My name is Rich Carlson. I have Peripheral Neuropathy with about a 10+ year history. I currently take Lyrica 300 mg qid, Cymbalta 30 mg daily, OTC Tylenol and Advil qid. My primary physician has referred me to a Medical Marijuana center. Has anyone here ever tried this? If so, did it help. My pain has incapacitated me to point where I would try most anything that works to relieve my pain.

@mojoearle

Hello group! I’m almost 34 years old and suffer from Chronic pain. I have had 16 surgeries and have been a patient at the Mayo Clinic in Scottsdale for almost 3 years now but I live in Idaho and have to travel down to Arizona every three months for a month or so of treatment and testing and Doctor appointments and just even thinking of packing and flying down makes me hurt even more. But in all seriousness I do struggle with the long trip down to Scottsdale and then making it to all of my appointments and giving hundreds of vials of blood and doing all the test and my existence is just painful all the time 24/7! I have a pain Doctor in Boise but they make everyone at their clinic only take extremely low doses of pain medication a day and DONT GET ME WRONG I WOULD KILL TO NEVER HAVE TO EVEN LOOK AT A NARCOTIC PAINKILLER AGAIN BUT I DONT EVEN GET TO A 5-6 ON THE PAIN SCALE!

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mayo in Rochester has a Pain Rehab class that helped me get off Opioids and manage my pain. I would strongly recommend it for anyone with chronic pain.

Hello I am BunnyLove. I am so thankful that I finally found this group. I am in so much need of some comfort right now. Been suffering for three years now and still no answers from 5 doctors. Mentally it has taken a ginormous toll!!! So thank you for being here!

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