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.

@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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Sorry about your sister in law but everyone is different. I have been on the same dose of a narcotic and it has allowed me the ability to exercise and keep myself in better shape. It has saved my life so to speak. I eat well and NEVER and I mean NEVER take more medication that I am written. I have been on the same dose of my medication for years and am stable. I tolerate a level 3-4 pain on a daily basis but I accept that. Natural remedies were worthless for me. Like taking candy. Addicts will find ways to get more medications no matter what. Many chronic pain sufferers I know follow their prescription instructions to a tee.

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@janstar61

Sorry about your sister in law but everyone is different. I have been on the same dose of a narcotic and it has allowed me the ability to exercise and keep myself in better shape. It has saved my life so to speak. I eat well and NEVER and I mean NEVER take more medication that I am written. I have been on the same dose of my medication for years and am stable. I tolerate a level 3-4 pain on a daily basis but I accept that. Natural remedies were worthless for me. Like taking candy. Addicts will find ways to get more medications no matter what. Many chronic pain sufferers I know follow their prescription instructions to a tee.

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Thank you @janstar61

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@johnbishop

@wisco50 mentioned that it did not help them in a post in the "What helps spinal stenosis besides surgery" discussion here https://connect.mayoclinic.org/comment/316457/

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John is correct. I did not find it helpful at all. Sadly. I ended up with an implanted spinal cord stimulator instead. My way of dealing with the pain and avoiding a major back surgery involving another fusion at more than one level again. Is it perfect? No. But it allows me enough relief I can walk my dogs again most days, work in the garden/yard, etc. FYI, my stenosis is “moderate to severe” on MRI several years ago now. Guessing it’s now left the moderate model behind…argh.

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Hello. My name is Barbara. My story is that about 2 1/2 years ago I had a hemorrhoidectomy and have had burning neuropathic anal pain ever since Multiple doctors, including a pelvic pain specialist, the working diagnosis is anal nerve involvement from the surgery/scar tissue. No
help from gabapentin but I can’t take high doses and function. Most recently a pain physician did an injection into the ganglion of Impar. It’s in the lower sacral area. No improvement and I have an
Appointment to talk to him again. I’m wanting to know has anyone had a similar issue and/or had that type of injection. Or have had any success with treatment. Thanks so much

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@bwardccrn

Hello. My name is Barbara. My story is that about 2 1/2 years ago I had a hemorrhoidectomy and have had burning neuropathic anal pain ever since Multiple doctors, including a pelvic pain specialist, the working diagnosis is anal nerve involvement from the surgery/scar tissue. No
help from gabapentin but I can’t take high doses and function. Most recently a pain physician did an injection into the ganglion of Impar. It’s in the lower sacral area. No improvement and I have an
Appointment to talk to him again. I’m wanting to know has anyone had a similar issue and/or had that type of injection. Or have had any success with treatment. Thanks so much

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@bwardccrn. I am so sorry I can’t offer any advice but I can offer my support and empathy for the pain you must be going through. You are a tough cookie!

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@bustrbrwn22

@bwardccrn. I am so sorry I can’t offer any advice but I can offer my support and empathy for the pain you must be going through. You are a tough cookie!

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Barbara hi! I had exactly what you have and sat on a donut for 14-1/2 years. I cried alot. But....what gave me relief was anti-seizure medicine that I was taking for an unrelated matter. You must tell your doctor. My PT at the time said she had just heard about that. Good luck! BTW, it worked pretty quickly.

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I’m Bette. I’ve suffered with Degenerative disc disease for 40 years. Many surgeries and 4 fusions. Now I have arthritis everywhere. Been with pain management for many years. Been on the lowest level of morphine for 11 years now. I constantly battle depression, which I’m sure most chronic pain patients do too. I have great family and friend support and refuse to give into the declining ability to walk. I exercise all the time and although my legs are weak I’m not in a wheelchair! I want to follow this blog to gain any knowledge of what works for other patients.

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My name is Diana. I am a 59 year old female diagnosed with autonomic small fiber neuropathy and CFS. I take 1800mg of Gaberpentin daily and I have a prescription compound that I use. I have unrelenting burning pain in my thighs that is exacerbated at night. I have spinal and cervical stenosis as well. I had discotomies as well as fusions on c4/c5, c5/c6 in 2019. My surgeon said I was lucky if I get a 70% positive outcome. He was right I am better but still have pain at times. I take prescription ibuprofen for this I also have Tylenol with codeine #4 but don’t take it as I am on quite a few medications and makes me so tired. I save it for an emergency.

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@grandmar

@JustinMcClanahan
Hi!
I just read @seanivor post and your reply. I found it very interesting and I followed the link you provided as well as other links in other areas.
I've had many issues with my spine for which I have had 2 surgeries this year. Thank goodness the chronic pain I lived with for 10+ years are gone. Last summer, before my 2nd surgery, I found that I could not move my foot from left to right or raise my toes when my right foot was flat. My toes were also numb. My right foot was OK although it did not move normally. My surgeon did not know if it was coming from my lumbar issues, but the problem did not get any better after my surgery. I've had many tests including blood, x-ray, MRI, mylogram (ouch!!!), EEG for the nerves, and some sort of ultrasounds by a vascular surgeon. Nothing was definitive.
My neurosurgeon is perplexed and sent me to a neurologist. Upon a thorough exam, she ordered more blood work and another EEG (EMG???). I go tomorrow.
I do have osteo-arthritis and fibromyalgia. Until I read the info about small-fiber neuropothy I thought that some of the things that has been happening to me was just my body breaking down or getting older (just turned 64 this week). Anyway, I have dry eyes, dry mouth, I get itches in my feet and/or toes that I feel like I cannot scratch hard enough to reach it, I get shooting pains in in feet that do not last more than a little while (I attritubted it to spasms), I do not sleep well at all (I am lucky to get 3-4 hours and that is NOT straight through), no bladder or bowel issues (except constipation), I cannot stand in one spot for long, I fall, on occasions, I do get dizzy and so on. The info talked about being diabetic or pre-diabetic. Two years ago, I was pre-diabetic. I had weight loss surgery and lost between 80-90 pounds (depending on the day) and all my blood levels were perfect. Except.....when the neurologist checked my blood, my thyroid was EXTREMEMLY LOW. For years and years, even before my weight loss, I had a slow thyroid, but with meds, it has been fine AND I just had blood work about 4 months ago and it was fine. This becomes more interesting!!!!
I've copied some of the things I read and will bring it up to the doc. It is not something I WANT, but I think it is something that needs to be looked into.

Sorry for going on and on....
Ronnie (GRANDMAr)

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Have you been screened for Sjögren’s? Your symptoms sound familiar (I have this auto immune disorder). Sjögren’s is very under diagnosed, often labeled as fibromyalgia.

This group is dedicated to Sjögren’s Patients. Started by an MD who has Sjögren’s.

https://www.smartpatients.com

You might find some help here. Good luck!

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Hello,
Although my post was written 2 years ago, l still have the same issues and more.
I now have an issue walking which is NOT pain related.
My legs get to a point where they just stop working.
I have horrible balance issues and must use a cane or a walker if I go outside my home.
My neurosurgeon has ordered 3 MRIs from my cervical spine through to my lower lumbar.
We have been fighting with insurance but they finally approved it and it will take place next week.
Guess they should be very telling.
I will discuss Sjogren's with him.
Best wishes!
Ronnie (GRANDMAr)

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