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.

hi, everyone not really sure how this works but I have foot drop and sever neuropathy and have been on heavy pain meds since Sept. of 08 Morp hine 60 mg 4 times per day dialuad 2mg 2 times per day and tramadol. I have been to many pain doctors and my last pain doctor fired me accusing me of using a paper script that I never received. A long story anyway a got a detective involved and he got the picture of the woman that was trying to fill my scripts. So, I went through withdrawals for about a week. It took me a couple of day to figure out why I was so sick. So, I finally found one doctor out of my plan that would take me and he has put me on Suboxone. Has anyone ever heard of that for chronic pain? It is supposed to be for people that have been on Heroin and they give them that drug to help them come down. I was on it for about a month and went back and told him it was not working and please give me some Hydrocodone and he told me the pain would be worse and he was right. So, now as of 2 days of ago I am on Suboxone again. I ask him how long it would take for me to fill better and he told me it could take up to 6 months. I have this cream that I started putting on my feet and I think that it is really working and my feet do feel better, but I am really concerned about the 6 months. But at this point I really do not have any other options. I might have one other doctor i could go to but if he would not give me any opiods I would be shit out of luck. Excuse my language. I am so frustared at this point. So, I have been looking around about surgeries for neuropathy. Has anyone ever had that done. I do not know if that would even work on me since I have Foot Drop. And of course I waited to long to have something done about my Foot Drop because I did not know someone could do something about thanks to my neurologist. Anyway I guess my main 2 questions
: Does anyone know about Suboxone?
And has anyone done anything for ther neuropathy? Surgeries or something called the Scrambler at John Hopkins?
Thanks for input .

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FOLLOWINGREPORT

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@mikween

hi, everyone not really sure how this works but I have foot drop and sever neuropathy and have been on heavy pain meds since Sept. of 08 Morp hine 60 mg 4 times per day dialuad 2mg 2 times per day and tramadol. I have been to many pain doctors and my last pain doctor fired me accusing me of using a paper script that I never received. A long story anyway a got a detective involved and he got the picture of the woman that was trying to fill my scripts. So, I went through withdrawals for about a week. It took me a couple of day to figure out why I was so sick. So, I finally found one doctor out of my plan that would take me and he has put me on Suboxone. Has anyone ever heard of that for chronic pain? It is supposed to be for people that have been on Heroin and they give them that drug to help them come down. I was on it for about a month and went back and told him it was not working and please give me some Hydrocodone and he told me the pain would be worse and he was right. So, now as of 2 days of ago I am on Suboxone again. I ask him how long it would take for me to fill better and he told me it could take up to 6 months. I have this cream that I started putting on my feet and I think that it is really working and my feet do feel better, but I am really concerned about the 6 months. But at this point I really do not have any other options. I might have one other doctor i could go to but if he would not give me any opiods I would be shit out of luck. Excuse my language. I am so frustared at this point. So, I have been looking around about surgeries for neuropathy. Has anyone ever had that done. I do not know if that would even work on me since I have Foot Drop. And of course I waited to long to have something done about my Foot Drop because I did not know someone could do something about thanks to my neurologist. Anyway I guess my main 2 questions
: Does anyone know about Suboxone?
And has anyone done anything for ther neuropathy? Surgeries or something called the Scrambler at John Hopkins?
Thanks for input .

REPLY
FOLLOWINGREPORT

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@mikween

I use Lidocaine cream on my feet at bedtime, and it has helped relieve the burning pain for a couple of hours, getting me to sleep. I’ve tried every medication available for neuropathy, and none of them have helped. I’m taking Cymbalta and Morphine sulfate contin right now, and it keeps the pain down to a range of 3-7. I did a trial spinal cord stimulator implant, and it was a wonderful week. I’d forgotten how good it felt without pain. Unfortunately, I have a few other issues that have to be addressed before I can get the permanent implant. I tried the Abbott Burst stimulator, which started with St. Jude’s, and was bought out by Abbott recently.

Jim

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi @akasha92,
I’d like to invite you participate in the Multiple Sclerosis (MS) discussion group here:

– Multiple Sclerosis (MS) – please introduce yourself http://mayocl.in/2eKI4Kj

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hi I am Joan and have had many spinal fusions and am left with chronic pain also. I do understand how you feel. No one wants to take medicine but sometimes it is necessary in order to function. Chronic pain is no different than someone that has a disease of heart problems, diabetes, etc. They take medicine to control it. There are many modalities to use like heat, ice, TENS unit, physical therapy, but also pain medicine. I too need them. Some days less and some days more. Weather affects me. Please don’t feel down. Chronic pain is just that…chronic and needs to be dealt with. I have used the gabapentin with great results for nerve pain.

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@jlfisher56

hi I am Joan and have had many spinal fusions and am left with chronic pain also. I do understand how you feel. No one wants to take medicine but sometimes it is necessary in order to function. Chronic pain is no different than someone that has a disease of heart problems, diabetes, etc. They take medicine to control it. There are many modalities to use like heat, ice, TENS unit, physical therapy, but also pain medicine. I too need them. Some days less and some days more. Weather affects me. Please don’t feel down. Chronic pain is just that…chronic and needs to be dealt with. I have used the gabapentin with great results for nerve pain.

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@jlfisher56

Gabapentin is one of many meds I’ve tried, without success. The neurologist and the pain specialist have a couple more things to try if the stimulator doesn’t do the job. For most of my life, I took no drugs, but our bodies change, and I’m not afraid to take what I need. Having and treating depression and other mental illnesses, complicates things. I’m glad that all of my doctors have an up to date list of my meds.

Jim

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I totally understand Jim.I finally had to use narcotics and they make a difference. Other medications work for the damaged nerves, GI tract damage, spasms neck, back and legs but, really do not touch the pain anymore after 25 years, especially with all the surgeries and complications. Never would I talk anyone out of trying anything they feel might help them but, I would rather use my “external” TENS electrical stimulator than have one embedded into my spinal area. I have had enough operations (spinal fusions that caused scar tissue, even into spinal canal) and complications I have seen in others…it frightens me. I know people have had wonderful relief but as a nurse, (I keep up to-date-on my field), I recently read of problems with some stimulators. You have to use what works for you and if the pros out weight the cons, and give you the “hope” you need, I wish you the best. Look at as many professional sites as you can to get the info; also, check the clinical trials for info, NIH, i.e. to get very good assessment of outcomes. My best that you obtain much needed relief.

Joan

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Hello all,
I have chronic migraine with an average of 20 migraine headache days per month and a non-stop “base” pain at all times that I don’t even count as a migraine headache. I’ve had migraine since I was 11 and became chronic about 10 years ago. Each day is a battle.

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi. My name is Barb and I have chronic intercostal nerve pain from a thoracotomy for lung cancer in 2007. My pain got worse in 2013 after my 2nd radio frequency ablation. It now wraps around my whole ribcage and into upper abdomen. I’ve tried everything including 2 different spinal cord stimulators. I saw my pain doc last Friday about options as the new stimulator is not helping much. He has no other options for me. I have decided to try CBD (hemp) Oil. Praying it helps.

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Hi every one, i havnt been on line for 4_5 months. But i am the migrane person 25 days a month for the last 3 years.
Well thank god i finnly got some relief!!!
BOTOX. Yep i tried every pill every test and i mean everything!!!! It was slow to work. Started first botox in October of 2016. Still got the migranes but not as violent as before. Then the second dose on dec 17th. The headacks were not lasting as long and not as violent. Then on march 20th. My third go around!! I hav only had one a month in the last two months the 13th and 14th of april only lasted 2 days. And the 5th and 6th of this month only lasted 2 days. Also when i take something for the migrane it really helps. Before it didnt mater what i took. Nothing much helped. So if you havnt tried botox then check it out it is pretty expensive if your ins. Dosnt cover it. Good luck
Sharon

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Hey Kelsey , I’m looking for anyone that suffers with GN pain . Thank you for welcoming me to this group .

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@mattie1247

Hey Kelsey , I’m looking for anyone that suffers with GN pain . Thank you for welcoming me to this group .

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Hello @mattie1247, and welcome to Connect. Would you mind sharing a bit more about yourself if you are comfortable? I am trying to learn as many medical acronyms as possible, but would you mind clarifying what GN pain is and tellings us a bit more about it?

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@mattie1247

Hey Kelsey , I’m looking for anyone that suffers with GN pain . Thank you for welcoming me to this group .

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I am not sure what you are referring to but one abbreviation GN stands for is a post-infection of the kidneys-glomerulonephritis, from a post-strep infection. Hope it helps when you ask you in your chat group.

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@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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Hi Frank my name is Joan. I too have dry eye syndrome. It can be very painful and bothersome. Every four hrs eye moisture drops and I refuse to get eye plugs. Medications also can dry the eyes out. My doctor has me do an eye “wash”. A warm cloth, place at the eyelid for 30 seconds, and it allows the moisture from between the eyelashes also to moisten the eyes.That surprised me and it helps. I do it 2x/day. He said to keep using the drops. I had uveitis years ago in 1993 and was told it was from arthritis (which I hardly had and was young). Hope you find answers. They do have longer acting eye drops to keep the eyes moist.

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I’m sorry I should have explain more . GN is Glossopharyngeal neuralgia , it’s a damaged nerve that stim out from the base of your skull and causes horrible pain in the head , ear , jaw and neck . It first started on my left side of my face but now has gone to my right side . Thank you for your response

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi @barbvh!!
You just gave me chills and flashbacks from my own experience with costochondral contrite us and intercostal pain!!! Took years for me to finally be pain free. I would like to give you some hope!!!

As in a car accident in 1999 I broke my sternum through my sternomanubrial joint they removed half my sternum and my third fourth and fifth ribs are floating and I have irreversible damage to the nerves along with many other injuries. I saw 27 surgeons who all told me “sternal fracture is always heal I needed to give them time and be patient!!!”

I am not a patient person so I went to Mayo Clinic in Rochester Minnesota on standby and waited until I could get seen. This was the best decision I have ever made!!!

Here is a link on treatments.
http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/treatment/con-20024454
Can you share some of the treatments you have had in the past?? Physical therapy? Aqua therapy? Biofeedback?

Medications I 100% wholeheartedly encourage every person to have genetic testing done before prescribing or taking any new pain medications. Every person’s DNA make up is different and not all meds are made for every patient this is why some people have better response to meds versus others. By having PGX (pharmacogenetic) testing done ahead of time doctors are able to prescribe the right pain medication, at the right dose, at the right time a day, to treat your symptoms without all the nasty side effects and wasted money.

http://mayoresearch.mayo.edu/center-for-individualized-medicine/pharmacogenomics.asp

Looking forward to learning more about you!!
Dawn

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