1. < Chronic Pain

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Gary, Alumni Mentor | @gman007 | Jun 3, 2018
In reply to @freezing "Hello. My name is Ann. I have chronic pain and have been taking oxycodone for about..." + (show)
@freezing

Hello. My name is Ann. I have chronic pain and have been taking oxycodone for about 6 years. I was diagnosed with EDS less than a year ago. I’ve had around 45 surgical procedures and continue with additional surgeries. I self diagnosed followed by confirmation by a rheumatologist. I was diagnosed with arthritis in my 20s. I worked as a generalist in the clinical laboratory for 17 years and as a RN for ten. Up until this past month my PCP prescribed my pain medication. Since November of 2017 until May of this year I had 3 surgeries, several teeth extracted, pneumonia, and 3 episodes of severe muscle spasms. Having worked in healthcare many years I am knowledgeable in the safe practice of using narcotic and non-narcotic medications. There were times I took more than my usual doses of oxycodone. I kept my PCP informed about when and why I took extra medication. I had a pain contract with my doctor. With a pain contract I cannot receive any prescriptions from another doctor. I went through hell with pain because of this. I have never abused my medication. On the last update to my PCP I was informed she would no longer prescribe oxycodone for me. She referred me to another doctor to get me on Suboxone. I explained I was not an addict and Suboxone would not help relieve the pain. She insisted otherwise. I saw the physician I was referred to. He agreed with me. I am not an addict and Suboxone, he stated, would not be beneficial to me. I went to my pain clinic and explained the situation. I am now taking OxyContin 3 times a day and I’m allowed two 10 mg oxycodone per day. I had to sign another contract. The experience was humiliating. I feel I am being treated like a criminal instead of a patient with legitimate reasons to be taking narcotics. In the past I have used CBD capsules to reduce pain. If I do so now I will no longer be able to get my prescribed medication. Chronic pain, loss of the ability to work, and physical limitations has also caused problems with depression. I know there are many individuals out there with these same issues. I feel each and every one of us needs to stand together for changes in our health care system to be made.I know this has been long to read. Thank you for taking the time to read this. It feels good to vent. There are many days I want to give up. When a life lacks quality it’s difficult to keep on trying to live.

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Hi Ann, I am Gary and a volunteer mentor. I had acute pancreatitis hospitalizations thrice in 2006 and by the third was dx'ed with chronic pancreatitis. I have had a distal pancreatectomy, a cholesystectomy, a partial thyroidectomy, hernia repair, dangerous infection after having the tumor (benign) removed from my pancreas, and probably an avg of three ERCP's per year since 2008. So, none of that is to say anything other than I understand pain at high levels on a chronic basis and I also have felt like a street druggie more than once in trying to get properly treated medicinally and as you know, it continues to get more difficult. I am sorry that you or anyone has to endure such extreme pain and then seemingly be blamed for wanting some relief and there are minimal choices because of a system that punishes those who follow the rules, don't prescription shop, submit to random drug testing, sign narcotic contracts, and if we get the drugs we need to just get by, they are still not nearly as effective as other drugs that should be available to anyone who suffers in the way you describe. I write politicians asking that they put themselves in the same place and they would not recognize empathy if I could beat them into submission with it; I don't mean violence just bringing them into our world and show them the millions struggling in the same way.

Anyway, please come back here to talk about your frustrations and talk with others who are experiencing similar lives. I find that to be cathartic and just knowing I am not alone, that unfortunately there are those having a more difficult time (very humbling), and that people care about the plight of someone other than themself and I think that does just a bit to lower my pain level. If you are like the rest of us who have needed opioids for years, I am sure there is anxiety over everything and keeping a supply of medicinal relief is just one of those panic inducing fears. I think talking is also helpful for that malady as well. I am here most days for at least a bit of time and will attempt to make sure you know someone is listening. We always ask, because we are patients as well; please share any thing you have learned that helps you in your struggle and we will try to do the same. Nurses are wonderful to begin with and their perspective and knowledge is often very beneficial to us total lay-people.
Peace and strength, Gary

REPLY
springwater | @springwater | Jun 3, 2018

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

REPLY
24 replies
Texas Freedom | @oregongirl | Jun 3, 2018

My prayers and thoughts are with you. I pray she can mentally get thru this. Keep up updated please

REPLY
4 replies
jupiterkaren | @jupiterkaren | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

Not dr. Have hub in horrible pain.....I feel for yo. Exhausting. I pro does have horrible side effects. One day at a time. Get topical magnesium to rub on legs maybe and also a good probiotic since the strong antibiotics can do horrible damage too. I feel for her. I feel for you. Prayers. And wishes.

REPLY
lioness | @lioness | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

@springwater Just said a prayer for your wife and you I can't imagine the pain she is in.As a suggestion ,have you ever seen other avenues to complement what your Dr.is trying ,for instance ,see a nutritionist as certain foods give detrimental problems or see a holistic Dr.herbs and homeopathic meds in the right doses might help and a Holistic Dr might help .Spiritual blessings to you both

REPLY
springwater | @springwater | Jun 3, 2018
In reply to @oregongirl "My prayers and thoughts are with you. I pray she can mentally get thru this. Keep..." + (show)
@oregongirl

My prayers and thoughts are with you. I pray she can mentally get thru this. Keep up updated please

Jump to this post

Just to let you know, pain is not parkinsons.. I am on forum with Parkinson's and no one has that. They have given all kinds of remedies all natural and there may be slight help. It is hard for us when in pain she just want to die heart breaking and make me very sad. Thank you

REPLY
springwater | @springwater | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

We have cheated magnesium and calcium, pickle juice, cannabas, in several forms at times seem to relax her and many natural aids Parkinson's gro has told us. Her pain is different. Have essential oils. Have tried so much, just know drugs that docs give you make things worse. She took mestinon for 2 weeks and stop, I did not tell that in original post. That was my first post.
Thanks too all

REPLY
springwater | @springwater | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

I have tried to get in to natural path but to busy, even when tell them what we go through seems as no one cares. We have been to different docs they do not have a clue and not care she in in pain. I have turmeric, cayenne pepper mix in oil, it appears may be relief at times depends on pain. Thanks all for prayers and your feed back. We live in the country and were very active and that is what hurts us both not being able to work with our chores, very emotional.
Thanks

REPLY
jupiterkaren | @jupiterkaren | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

...as I sit here all day listening to my husband screaming in pain...honestly, I have no advice.

REPLY
lioness | @lioness | Jun 3, 2018
In reply to @springwater "Hi, I am writing for my wife. She has Parkinson's for past 20 years. July 2017..." + (show)
@springwater

Hi,
I am writing for my wife. She has Parkinson's for past 20 years. July 2017 she had a very bad uti infection. She had iv of cipro and a script for it. Also took cephlexin high dose then 250 mg daily for maintenance. Finish script. Has had 3 more utis and taking cipro 4 more times. March 2018 she was given mestinon for low blood pressure. Mestinon is for myasthenia gravis but said would help bp. So April 5 2018 begin taking 60mg 2x day increase to 3x day. She was hot and cold, not sleep, had diarrhea got dizzy when stand fell thought broke wrist. Went to er thought had a virus and Cray wrist. Said all is ok on 7th April. Then got severe thigh and calf charley horses on 8th last 45 minutes very painful. Doc says I do not know what to do. On 3rd day cramps go to very severe pain in legs spreads to back and all over while still in legs. We got no sleep. Pain mostly at night but can hit day time. Went to urologist said no UTI but sent in for culture, called said had UTI and gave cipro. Still pain each night. Daughter drove us to er at mayo clinic. Unlike our little town they were very helpful. Seen a doctor then a neurologist no pain finally at midnight pain hit Neuro was there. Did brain scan, blood work all ok . Admit at 3am and gave 100mg gabetine and did MRI of lower back 6:30am. It was ok. Came home late pm and she was ok for 3 days then pain hit again. Talk to mayo docs very difficult for us to get there, so went to local doc. He went up to 300mg gabetine but she still is in very bad pain every day or night. This morning at 4:30am last to 5:45am was bad. Today is June 3rd. We need help please. I just read yesterday that cipro damages nerve or tendons and maybe I think the mestinon triggered the pain.
Thanks

Jump to this post

@jupiterkaren can you please tell us why you husband is in so much PAIN

REPLY
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