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.

Hello oldkarl sorry for all your pains but I hope you will find some comfort on this sight

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@edieguinn

Hi. So happy to find this group. I have severe scoliosis, spinal stenosis and nerve damage in my legs. I’ve tried all methods of relief. Injections. Epidural. Not a candidate for implanted spinal cord stimulator. Spine is too curved. Looking for input from others. Don’t want to do pain meds if possible. I’m 64

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Hi, Edieguinn! I, too, have severe scoliosis, spinal stenosis and I also have rheumatoid arthritis throughout my system. I have a LOT of pain and I do suggest for you to take pain meds as they really help to relax the muscles around the problematic areas. I also suggest “Structural Body Integration” or “Rolfing” as a method of massage therapy and pressure point work — please do an internet search to find a practitioner in your area who is well trained in this process. My Mayo MRI actually showed somewhat of an improvement on my two 30 degree curves after I did the process!!! I am still hurting a LOT but not as much as I did before, so it is worth it! Best wishes! VickieKay

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@oldkarl

Hello. Old Karl here. Lots of issues. Probably AL amyloidosis, systemic, hereditary. Constant headache pain for 5 months, psoriatic arthritis, rheumatoid arthritis, polyneuropathy, feet, legs, bladder, kidneys failure, liver, pancreas, spleen, lungs, heart w/ arrhythmia, thyroid cancer, lymphoma, eye blepharitis and macular, spinal stenosis, ankylosing spondilitis. Macular (bleeding) skin with petechiae. Constant pain. Excess Serum Free Light Chain.

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Hello Old Karl, thank you for sharing more about yourself with other members on Connect. Here is a list of existing discussions regarding some of the ailments you listed that you may find helpful:

– AL amyloidosis http://mayocl.in/2dOVhlz
– Persistent headache http://mayocl.in/2dNTLL6
– Thyroid cancer http://mayocl.in/2cWBk64
– Spinal stenosis http://mayocl.in/2dNExX0
– Ankylosing spondilitis http://mayocl.in/2dvmQk2

Each discussion may offer insight on some similar symptoms you are experiencing, as well as connect you with other members who have experiences similar to yours.

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@oldkarl

Hello. Old Karl here. Lots of issues. Probably AL amyloidosis, systemic, hereditary. Constant headache pain for 5 months, psoriatic arthritis, rheumatoid arthritis, polyneuropathy, feet, legs, bladder, kidneys failure, liver, pancreas, spleen, lungs, heart w/ arrhythmia, thyroid cancer, lymphoma, eye blepharitis and macular, spinal stenosis, ankylosing spondilitis. Macular (bleeding) skin with petechiae. Constant pain. Excess Serum Free Light Chain.

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Thanks much for the discussion board info. Actually, right now the biggest problem I have is the lousy Mayo software which blocks me from signing in. I can get on about one time each week.

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Hello everyone. I am a 50 year old email with several chronic pain issues. RSD in foot/leg , Degenerative disc disease in my back, and trigeminal neuralgia in my face. I have had RSD since 1998. I am on Disability (after quite a struggle). I thought I would check in here and check out the topics and make some new friends hopefully.

Liked by susanlorrie

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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Thank you for your suggestion. I’ll give it a try.

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Kelly I need some serious help….on 10/3/2013 my 17 year old son found me in my bed face down un responsive he called 911 needless to say I was in very bsad shape .my family doctor had over prescribed me so many pain pills they put me on life support for a week..i was taking for back pain 360 10mg tablets of methadone ive never done herion and was taking this drug for over a year along with 180 30 mg oxycodone imm rel tablets 3 10 mg valium a day along with high blood pressure meds .they told my family my chances were not good my liver failed my kidneys failed septic shock nesdi among many other symptoms along with that came a NDE NEAR DEATH EXPERIENCE it had a profound impact on me and my family .I
have all my hospital records and my blood work came back negative on methadone oxycodone thc but positive for benzo did the narcon they administered have any affect on my blood test …despertley seeking some explanation or advise my attorney is freaking out because I totally overdosed on methadone the doctors even told my family…please help”””…BOBBY H

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@66693777

Kelly I need some serious help….on 10/3/2013 my 17 year old son found me in my bed face down un responsive he called 911 needless to say I was in very bsad shape .my family doctor had over prescribed me so many pain pills they put me on life support for a week..i was taking for back pain 360 10mg tablets of methadone ive never done herion and was taking this drug for over a year along with 180 30 mg oxycodone imm rel tablets 3 10 mg valium a day along with high blood pressure meds .they told my family my chances were not good my liver failed my kidneys failed septic shock nesdi among many other symptoms along with that came a NDE NEAR DEATH EXPERIENCE it had a profound impact on me and my family .I
have all my hospital records and my blood work came back negative on methadone oxycodone thc but positive for benzo did the narcon they administered have any affect on my blood test …despertley seeking some explanation or advise my attorney is freaking out because I totally overdosed on methadone the doctors even told my family…please help”””…BOBBY H

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The doctor who prescribed this is one of the reasons is one of the reasons other doctors won’t prescribe a safe and proper dose of medication for those who need it. I am so sorry this has happened to you. On top of your very bad pain in your back you will have to deal with this. I hope you get some good help.

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Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Hi @kathyv Nice to make your e-acquaintance here. I am sorry to read of all your spinal problems. I am Scott and my wife had six spinal surgeries prior to her fight with brain cancer. She had surgeries similar to what you describe. Laminectomy, two fusions, and then also the posterior/anterior major with rods, screws, etc. With her the screws began to push through so she had to then have it all removed. Long process and loads of chronic pain as a result.

She went through a lot of pain, pain clinics, PT, OT, etc. Little helped for her pain other than MS Contin. Later she did find that gabapentin helped with her very difficult leg pain. She also found an air mattress bed was a significant help.

Wishing you the best!

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Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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If I were you I’d be using much stronger language! There’s no right or wrong way for you to think. I retired 2 years ago. Planned on spending more time with my grandchildren and then my back went south. I’m pissed too. This was not my plan nor is your situation yours. Just stay positive as much as possible. Staying down makes it worse. I speak from experience.

Liked by safetyshield

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Hello, I am Fran Clark and I have pain all the time. Not much can help nerve pain, plus pain from the different cancers I have. Looking forward to share my story and read yours (maybe yours can help me) you never know. Thank you and God Bless

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@66693777

Kelly I need some serious help….on 10/3/2013 my 17 year old son found me in my bed face down un responsive he called 911 needless to say I was in very bsad shape .my family doctor had over prescribed me so many pain pills they put me on life support for a week..i was taking for back pain 360 10mg tablets of methadone ive never done herion and was taking this drug for over a year along with 180 30 mg oxycodone imm rel tablets 3 10 mg valium a day along with high blood pressure meds .they told my family my chances were not good my liver failed my kidneys failed septic shock nesdi among many other symptoms along with that came a NDE NEAR DEATH EXPERIENCE it had a profound impact on me and my family .I
have all my hospital records and my blood work came back negative on methadone oxycodone thc but positive for benzo did the narcon they administered have any affect on my blood test …despertley seeking some explanation or advise my attorney is freaking out because I totally overdosed on methadone the doctors even told my family…please help”””…BOBBY H

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Hi Bobby H,
I can hear the distress in your message. It sounds like you need professional help. You mentioned a lawyer. But have you spoken to a doctor about your blood test results? I’m also concerned for your safety. Are you safe?

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@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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Hi Fran, you can correct you email address by going to your Account Settings here: https://connect.mayoclinic.org/account.

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