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.

@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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@mamasitalucita I bought this brace through a catalogue

REPLY
@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

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Going gluten free is good for reducing inflammation of all sorts. I think everyone should try it for a month to see what happens. My Psoriasis went away and my wife's digestive issues vanished as well. You don't have to allergic to gluten or have celiac disease to be negatively affected by gluten. Buy "Three Bakers" Ancient grain bread, never Udis's, and use Jovial noodles. Those two brands are the best. Any brown rice noodles are OK but Jovial actually taste like real paste. The others taste like a bowl of brown rice which is OK if you want brown rice. Not so much if you want pasta. Pasta made from corn and white rice are lacking flavor and texture. Regular Asian Rice Noodles are great but they aren't pasta. Inflammation is at the root of many conditions including arthritis and cancer. It's worth the effort to try.

REPLY
@jeanie26

Hello everyone, it's been awhile since I have been here but I am here today to tell everyone something very important. I also have chronic pain and have for years, I have tried everything but it's still there. But that's not what I am here for today. I am here to plead with everyone to make a good effort to relieve your pain with natural remedies, I know they don't always work but try anything and everything before taking narcotic pain relievers. My sister- in- law and my best friend refused anything natural, she claimed she only got relief with large doses of Percosets and Klonopin for her anxiety. She tried Methadone and Subutex and did very well on both, for a while but they stopped working for her and she was back doctor and hospital hopping to get more of what she said helped. It got so bad that she was asking strangers for a ride to the hospital because she had called EMS so many times she didn't want to call them again. She went to the hospital twice in one day, for a while, then they threatened to have her picked up if she came back again. The hospital refused to give her any narcotics and the Drs in town knew her well and they too refused to give her anything. Once in a while, she would find a Dr. that didn't know her and would give her narcotics, but once he found out she had gone through 90 Percosets in less than a week, he too refused to give her anymore. She spent her bill money every month, ( she was on SSI ) on pills, I did everything I knew to help her, but the drugs had too strong a hold on her. My sister-in-law died last week in her sleep. No matter the cause of death it would be drug-related. She was 58 years old. A wonderful woman that I love still and will miss always. I saw a woman go from 0 to 10 in a matter of weeks. Her addiction cost her her life. Yes, she had chronic pain, but X-rays, MRIs, CT scans, showed arthritis, maybe some Fibromyalgia but nothing that would have caused her as much pain as she claimed to be in. It was her addiction making her pain so bad. Not that she wasn't in pain, because the pain was very real to her, but her need for the pills outweighed everything else. She gave up on herself, the depression and anxiety became so bad she refused to bath or change her clothes, she wouldn't eat, saying she was in too much pain to eat. She wasn't sleeping much, she would wake up every 2 hours and would find it hard to go back to sleep. She lost weight, her complexion changed, She would take the pills and sleep for hours during the days, hence her not sleeping at night. She smoked and would fall asleep with a cig. in her hand and had burned holes in all her clothes, floors and her bed. I tried everything I could, I sought the help of Dr's, DSS, Social workers and even went to the magistrate for advice but no one would help, She was a drug addict and that's all they could see. They overlooked the fact that she was a human being with a huge problem. No one cares when you are an addict. I am telling this story in hopes of saving lives. Yes, chronic pain is bad but so is the addiction. Pain won't kill you but addiction will. And I might want to add, no one starts off with the intentions of being an addict. It happens slowly, you start taking narcotic pain relievers as directed, one day it just doesn't seem to work so you take one extra, ok that helped, then one day you discover your pills are running out before time to refill, what happened to them? you didn't take them, or did you? you certainly wouldn't take all those pills, someone must have stolen some of them. You begin to think about who was in your home that would have taken them, you turn on your friends because they stole from you, how dare they. You are in pain and have nothing to take, damn people, stealing your pills. You get more pills and for a while, they are working fine then it starts all over again. One just isn't enough anymore, call the Dr. but he says he can't give you anymore and the cycle begins. Then one day you don't care about anyone or anything except getting that next Percoset. You are now in a living hell and the people that love you feel it too, they worry, they plead with you, you begin to lose weight, you have no concern for your appearance, you don't bath, your hair begins to smell bad, you are in more pain now than ever before, you go from Dr to Dr. hospital to hospital, you beg for something for your pain but no one listens. Can't they understand the pain you're in? They offer you something else for pain, Are they frigging kidding? your pain is far to bad for anything else except Perocet, after all, YOU KNOW they work, whats the matter with everyone? People have changed, And life just lost its meaning. You forget things, you hurt and no one will help you. Then one day you go to bed and your problems end. You are no longer in pain, you are happy and healthy. What about the ones you left behind? you know the ones who love you so very much. what about them? The heartache, the tears, the emptiness. So folks, please, stay away from the narcotics. I know, I know, you got it all under control, you would never abuse your meds, not you. Okay, have it your way. Do me a favor though, get your will and your insurance up to date. I hope this will touch someone's heart and save their life.

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I know I've said it before but it is still a great idea. Look into the Pain Pump. Yes it is narcotics but such a small amount, (2.75MG. per 24 hours) that you don't know your taking it except for the fact your pain is greatly reduced. Search these archives under wsh66 and read the more in depth things I've written about the pump. I go down to Mpls. to have mine refilled this week. One needle, 5 minutes and I'm good for another 3 months.

REPLY
@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

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Thanks.

REPLY
@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 absolutely Gary is right about gluten the tea helps also ,ginger and turmeric are anti inflammatory fighters as well as organic honey. Another came to me is it fibromyalgia?have you seen a rheumatologist?They will be able to tell you ,sorry I think I'm repeating myself,sr.moment lol,

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@jupiterkaren

Thank you. Mayo in Jacksonville, can't take him that far. Cleveland Friday. Prayers and fingers crossed for him. He's tired.

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@jupeterkaren lead keep us posted

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@jeanie26

Hello everyone, it's been awhile since I have been here but I am here today to tell everyone something very important. I also have chronic pain and have for years, I have tried everything but it's still there. But that's not what I am here for today. I am here to plead with everyone to make a good effort to relieve your pain with natural remedies, I know they don't always work but try anything and everything before taking narcotic pain relievers. My sister- in- law and my best friend refused anything natural, she claimed she only got relief with large doses of Percosets and Klonopin for her anxiety. She tried Methadone and Subutex and did very well on both, for a while but they stopped working for her and she was back doctor and hospital hopping to get more of what she said helped. It got so bad that she was asking strangers for a ride to the hospital because she had called EMS so many times she didn't want to call them again. She went to the hospital twice in one day, for a while, then they threatened to have her picked up if she came back again. The hospital refused to give her any narcotics and the Drs in town knew her well and they too refused to give her anything. Once in a while, she would find a Dr. that didn't know her and would give her narcotics, but once he found out she had gone through 90 Percosets in less than a week, he too refused to give her anymore. She spent her bill money every month, ( she was on SSI ) on pills, I did everything I knew to help her, but the drugs had too strong a hold on her. My sister-in-law died last week in her sleep. No matter the cause of death it would be drug-related. She was 58 years old. A wonderful woman that I love still and will miss always. I saw a woman go from 0 to 10 in a matter of weeks. Her addiction cost her her life. Yes, she had chronic pain, but X-rays, MRIs, CT scans, showed arthritis, maybe some Fibromyalgia but nothing that would have caused her as much pain as she claimed to be in. It was her addiction making her pain so bad. Not that she wasn't in pain, because the pain was very real to her, but her need for the pills outweighed everything else. She gave up on herself, the depression and anxiety became so bad she refused to bath or change her clothes, she wouldn't eat, saying she was in too much pain to eat. She wasn't sleeping much, she would wake up every 2 hours and would find it hard to go back to sleep. She lost weight, her complexion changed, She would take the pills and sleep for hours during the days, hence her not sleeping at night. She smoked and would fall asleep with a cig. in her hand and had burned holes in all her clothes, floors and her bed. I tried everything I could, I sought the help of Dr's, DSS, Social workers and even went to the magistrate for advice but no one would help, She was a drug addict and that's all they could see. They overlooked the fact that she was a human being with a huge problem. No one cares when you are an addict. I am telling this story in hopes of saving lives. Yes, chronic pain is bad but so is the addiction. Pain won't kill you but addiction will. And I might want to add, no one starts off with the intentions of being an addict. It happens slowly, you start taking narcotic pain relievers as directed, one day it just doesn't seem to work so you take one extra, ok that helped, then one day you discover your pills are running out before time to refill, what happened to them? you didn't take them, or did you? you certainly wouldn't take all those pills, someone must have stolen some of them. You begin to think about who was in your home that would have taken them, you turn on your friends because they stole from you, how dare they. You are in pain and have nothing to take, damn people, stealing your pills. You get more pills and for a while, they are working fine then it starts all over again. One just isn't enough anymore, call the Dr. but he says he can't give you anymore and the cycle begins. Then one day you don't care about anyone or anything except getting that next Percoset. You are now in a living hell and the people that love you feel it too, they worry, they plead with you, you begin to lose weight, you have no concern for your appearance, you don't bath, your hair begins to smell bad, you are in more pain now than ever before, you go from Dr to Dr. hospital to hospital, you beg for something for your pain but no one listens. Can't they understand the pain you're in? They offer you something else for pain, Are they frigging kidding? your pain is far to bad for anything else except Perocet, after all, YOU KNOW they work, whats the matter with everyone? People have changed, And life just lost its meaning. You forget things, you hurt and no one will help you. Then one day you go to bed and your problems end. You are no longer in pain, you are happy and healthy. What about the ones you left behind? you know the ones who love you so very much. what about them? The heartache, the tears, the emptiness. So folks, please, stay away from the narcotics. I know, I know, you got it all under control, you would never abuse your meds, not you. Okay, have it your way. Do me a favor though, get your will and your insurance up to date. I hope this will touch someone's heart and save their life.

Jump to this post

@jeanie26 I nearly lost my daughter to this type of thing. I stood with her even when she ended up in jail. She may not like me anymore and this is better than her dying. Her pain was depression. I so hope she is okay. Hurts way down deep. I have not seen her for over a year. Others have seen her at work.
I fully understand how you feel about narcotics. I have seen this type of thing and it is painful to lose a loved one in this manner. There are some that get a high and do start wanting more to obtain this high. Chronic pain is not always due to physical pain.
Sad that insurance will not cover natural ways. It is all about the bucks.
Chronic pain is a challenge.

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@lioness I was interested in holistic meds even in high school. I have found diet helps the fibromyalgia. Nothing helps the other things, but I still enjoy hearing the birds early in the morning with a warm cuppa. Nature is my high.

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@parus

@lioness I was interested in holistic meds even in high school. I have found diet helps the fibromyalgia. Nothing helps the other things, but I still enjoy hearing the birds early in the morning with a warm cuppa. Nature is my high.

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@parus Amen

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@jeanie26

Hello everyone, it's been awhile since I have been here but I am here today to tell everyone something very important. I also have chronic pain and have for years, I have tried everything but it's still there. But that's not what I am here for today. I am here to plead with everyone to make a good effort to relieve your pain with natural remedies, I know they don't always work but try anything and everything before taking narcotic pain relievers. My sister- in- law and my best friend refused anything natural, she claimed she only got relief with large doses of Percosets and Klonopin for her anxiety. She tried Methadone and Subutex and did very well on both, for a while but they stopped working for her and she was back doctor and hospital hopping to get more of what she said helped. It got so bad that she was asking strangers for a ride to the hospital because she had called EMS so many times she didn't want to call them again. She went to the hospital twice in one day, for a while, then they threatened to have her picked up if she came back again. The hospital refused to give her any narcotics and the Drs in town knew her well and they too refused to give her anything. Once in a while, she would find a Dr. that didn't know her and would give her narcotics, but once he found out she had gone through 90 Percosets in less than a week, he too refused to give her anymore. She spent her bill money every month, ( she was on SSI ) on pills, I did everything I knew to help her, but the drugs had too strong a hold on her. My sister-in-law died last week in her sleep. No matter the cause of death it would be drug-related. She was 58 years old. A wonderful woman that I love still and will miss always. I saw a woman go from 0 to 10 in a matter of weeks. Her addiction cost her her life. Yes, she had chronic pain, but X-rays, MRIs, CT scans, showed arthritis, maybe some Fibromyalgia but nothing that would have caused her as much pain as she claimed to be in. It was her addiction making her pain so bad. Not that she wasn't in pain, because the pain was very real to her, but her need for the pills outweighed everything else. She gave up on herself, the depression and anxiety became so bad she refused to bath or change her clothes, she wouldn't eat, saying she was in too much pain to eat. She wasn't sleeping much, she would wake up every 2 hours and would find it hard to go back to sleep. She lost weight, her complexion changed, She would take the pills and sleep for hours during the days, hence her not sleeping at night. She smoked and would fall asleep with a cig. in her hand and had burned holes in all her clothes, floors and her bed. I tried everything I could, I sought the help of Dr's, DSS, Social workers and even went to the magistrate for advice but no one would help, She was a drug addict and that's all they could see. They overlooked the fact that she was a human being with a huge problem. No one cares when you are an addict. I am telling this story in hopes of saving lives. Yes, chronic pain is bad but so is the addiction. Pain won't kill you but addiction will. And I might want to add, no one starts off with the intentions of being an addict. It happens slowly, you start taking narcotic pain relievers as directed, one day it just doesn't seem to work so you take one extra, ok that helped, then one day you discover your pills are running out before time to refill, what happened to them? you didn't take them, or did you? you certainly wouldn't take all those pills, someone must have stolen some of them. You begin to think about who was in your home that would have taken them, you turn on your friends because they stole from you, how dare they. You are in pain and have nothing to take, damn people, stealing your pills. You get more pills and for a while, they are working fine then it starts all over again. One just isn't enough anymore, call the Dr. but he says he can't give you anymore and the cycle begins. Then one day you don't care about anyone or anything except getting that next Percoset. You are now in a living hell and the people that love you feel it too, they worry, they plead with you, you begin to lose weight, you have no concern for your appearance, you don't bath, your hair begins to smell bad, you are in more pain now than ever before, you go from Dr to Dr. hospital to hospital, you beg for something for your pain but no one listens. Can't they understand the pain you're in? They offer you something else for pain, Are they frigging kidding? your pain is far to bad for anything else except Perocet, after all, YOU KNOW they work, whats the matter with everyone? People have changed, And life just lost its meaning. You forget things, you hurt and no one will help you. Then one day you go to bed and your problems end. You are no longer in pain, you are happy and healthy. What about the ones you left behind? you know the ones who love you so very much. what about them? The heartache, the tears, the emptiness. So folks, please, stay away from the narcotics. I know, I know, you got it all under control, you would never abuse your meds, not you. Okay, have it your way. Do me a favor though, get your will and your insurance up to date. I hope this will touch someone's heart and save their life.

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@parus I am sorry about your situation with your daughter someday she will realize you did whats best for her . Stay strong and keep the faith you will see her someday I pray .

REPLY
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