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.

@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

@marcyk I fill the sink full of hot water not scalding put Epsom salts in swish it around till desolved wring out your washcloth with water and hold it on the muscle till it cools down this lets the magnesium penetrate its the best way I,ve found so far helps to sleep at night . Other things that help leg spasms or charley horses is drinking pickle juice anything that has the vinegar in oh this is also good for the legs , do likewise with the vinegar wring out washcloth and apply to legs.

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 How did the ice help?

REPLY

@jeannie26 I am a retired nurse and have studied holistic meds for a long time herbs, homeopathic meds and am a big believer in going naturel for ailments one for me has been fibromyalgia . thanks for posting hope people listen there are some things that only traditional medicine will help bless you

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

@jupiterkaren Its the ginger-turmeric tea good for inflammation

REPLY
@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.

Jump to this post

@mamasitalucita I,ve had to wear a brace since my back is so messed up from falling on ice to a fracture of the L2 .I have tried a lot of different kinds but the one I use now I like because it is cloth on the outside but inside it is red with little cut out holes which radiates your own body heat back into your back. It gives me great relieve and is very comfortable I can wear it all day and I have without any discomfort the only thing when you take it of you back is sweaty but that's a good thing as I know it works.

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups... Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7<br />
<br />

Jump to this post

@Sharon with my fracture back and fibromyalgia there are other things I have done . You need to try the naturel ways. Herbs ,homeopathic meds Epsom salts for muscles or vinegar bath for soreness . You don't have to rely only on Dr.s prescriptions there are Tens units, chiropratic services acupuncture and so many other ways ,ice packs for instance is anti inflammatory heating pads to bring the blood to the service for healing. I do agree ,don't get me wrong Opiods do the job when these aren't lasting of course taking Opiods aren't either they have to be repeated like everything else. I was on 6 Tramadol at one time when I fractured my back but Dr. weaned me down to 1-2 now as I need. I use over the counter creams like Fibro malic cream for the nerves and Arnica cream for the pain, also there is a Arnica tea for pain. So you can help yourself also.

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups... Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7<br />
<br />

Jump to this post

@jenapower Hi lioness here so happy to have found a post of yours . Im happy to hear your fibro is gone I stopped taking the Lyrica and my symptoms went away but then I tried Cymbalta worst med there is it gave me halucinations. horrible. I don't seem to have a lot of fibro symptoms mine is due to my fractured back L2 in 2005 as my rheumatologist explained to me the fracture is pinching nerves into my legs so I have a constant pain but one tramadol and one meloxican does it for me with everything else I do .

REPLY
@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.

Jump to this post

@lioness, that sounds awesome! I am so glad you have this brace available to you! Mine was made for me many years ago. I'm sure there have been advancements since then. Another thing that helps me is that I try spacing out my day into thirds. The third in the middle of the day is used to take it easy, stretch my back out, maybe even take a nap. It helps me a lot. So nice to meet you on this journey. I am so happy we have such a nice, safe place to connect with one another. As a dear friend of mind is fond of saying, "We are better together."

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

Hello @ springwater; I am Gary and a volunteer mentor. Could the cramps be related to hydration? I know that seems simplistic, but disease and prescription meds can lead to dehydration even if fluid intake is good. I have bad foot/leg cramps almost nightly, but I stay dried out because of diabetes and some of my meds and I consume about 12-15 cups of water daily. You are right about the effects of being on sun=ch high doses of antibiotics repeatedly; your immune system can become compromised and your gut ecosystem is devastated. Magnesium (another mineral depleted by many prescript. medicines) and an anti-oxidant supplement seem to help some with my leg cramps. As, others have said, I am certainly not a Dr., but do have way more experience with pain than I would ever want for me or anyone.
Blessings and best wishes, Gary

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.

Jump to this post

@jeanie36, Hi Jeanie, I am Gary and a vol. mentor here. Welcome back and I am sorry for your pain and heartbreak. It is so very sad to see what the narcotics do to some and as a 12 year sober alcohol abuser, I understand how it sneaks up and grabs you and by the time you realize something is not right, you are already in the grasp of something demonic. My heart goes out to anyone who finds themself or a loved one in this position, but there is help for addiction and the anxiety and depression that come with it. Unfortunately, the only medication I have found besides narcotics that help my pain was synthetic cannabis and it is no longer legal in my state. We really need some alternatives for pain treatment. Please be kind to yourself in the aftermath of your sister-in-law's passing. You are not at fault and you truly did everything you could to help. I know we always wonder if we could have done more and let way too much fault settle on us and that is unfair to you and to those who care about you.
Peace and blessings, Gary

REPLY
Please sign in or register to post a reply.