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.

Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS (RSD) for 18-19 years. I also suffer with migraines and chronic back pain. I look forward to meeting my fellow chronic pain members,and wish we were all on here for other reasons

@baxtersmom

Thank you for your comments on those of us who find narcotics helpful. I have been taking them for many years responsibly with the care a very forward-thinking well-trained pain management doctor. He is trying his best to deal with all the regulations and does a lot to help minimize the hassle for his patients who have shown him they are responsible and trustworthy with these medications. I never feel like I am being treated like a drug-addict. Without these medications my career (I am a professor at a major University) would have ended years ago because I would not have been able to keep teaching and being on my feet for all these years. I encourage people to find a good pain management doctor who shows them the respect and trust and care that they deserve. My pain management doctor also does many different things and recognizes that pain management medicine is not a one size fits all practice. He uses injections, nutrition, spinal cord stimulation, supplements, and many new and cutting edge techniques. He also refers to other doctors and practitioners who he thinks may be helpful. He is very available to me and his office is extremely responsive. His care kept me out of a surgery that I think I would have regretted many many years ago. This is what we all deserve and while I have terrible pain almost every day which increases as I get older, I know that I can continue the search that we all are on for what works for us with the help of a caring and knowledgeable doctor. It took me a long time to find him. When I began my search, he was probably still in medical school. I guess my message is don’t give up on finding good pain management people. And speak up in defense of those of us who use narcotic medications responsibly. We need to advocate for ourselves.

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Who is your pain Dr.

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

@lyssia

It’s nice to know that other pain sufferers feel as I do. I do not want the insurance companies or government telling my doctor or me (a responsible drug user) what I can or can not use to help my situation. I have a really good pain management doctor for several years now and between the pain medication (use only occasionally right now) injections (upper back trigger point and cervical facet joint steroid) acupuncture, tens, exercise, supplements, meditation practice for me he also has other things as appropriate for the person. I find that this subject of not wanting the doctors to prescribe pain medications to anyone, the insurance companies wanting other medications to be used (that may or may not work or have more side effects) and the government looking at punishing the doctors for prescribing or limiting what amounts can be given to be on my mind a lot. I am at a place at this time where the combination of everything that I use is working pretty good for me and I don’t want to go back to where I was in the beginning because of the drug abusers. I don’t think that the responsible doctors should not be bunched in with those that are handing out pain meds indiscriminately for a profit. Thanks for letting me vent. : )

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Dr. Michael Park and dr. Banik at M health in Minneapolis Minnesota

@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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If you're going to need pain medication for the rest of your life, the only real solution is to have a pain pump inserted into your body. I love mine that saved my life let me know if you want more information

Hi, friends – regarding implanted pain medicine pumps…my husband had mesothelioma, diagnosed and treated at Mayo RST. To ease his chestwall pain, we tried a Medtronic pump, but the outpatient surgery made him very ill, the morphine did not help and what held so much promise ended up adding to his misery and his quality of life went downhill rapidly. The intention was good. But the reality was that nothing about that procedure or the medicine was a good choice. I know that for some, it's life-changing – I wish we had had a positive experience.

@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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I fear things are only going to get worst in the future. Sorry to hear what your state is doing. 19lin

@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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It's awful in California; truly grotesque. I quit my pain clinic 8 months ago because of the total lack of understanding and interest.Unless I wanted RFAs at $3000 a pop, I wasn't worth the anesthesiologists' time. And for a minimum of meds I waited at least 4 hours, plus the 2 days in bed it took to walk again.Boy, was that a mistake! Now I'm on my third primary-care Doc, and have no expectations at all. After 45 years with AA, cerebral arachnoiditis, Ankylosing Spondylitis and severe DDD, not having ANY opiates even for terrific pain flares, brings me smack dab into a place where suicide is acceptable, even preferable to the pain. I don't know what to do. If I still lived in L.A. this wouldn't be a problem. It's just the physical trauma that would I'd be in without Pain medicine. By the time I drove to the city I'd be so wacked out in body and mind, some momzer would hand me a prescription for Thorazine!

purplecrel

@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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geezappeal1, I saw your post and I want to tell you that much of your post rings true for me too. I have DDD, Spinal Stenosis, Arthritis in all of my joints, Diabetes, and Fibromyalgia. There's more but I would like to focus on what helped me. It might help you. You are so right about finding a good doctor. Most primary cares don't understand chronic pain sufferers. I hurt so bad in 1990, when I was diagnosed with Fibromyalgia, that I wrapped up in a quilt and just thought I was going to die. Hopefully this last doctor will do you some good. With any luck at all he will give you a low dose of something to help you at night. Doctors here are extremely slow about giving pain medicine. I will be honest, I was miserable for years and the doctors would not give me what other pain patients were getting. I knew what they got, and it was something that helped me. But they are so afraid we will get addicted, they go very, very slowly. Shots didn't help me at all. Electrical acupuncture and chiropractic helped. Massages helped. But only so much. The Lazy Keto Diet helped. Magnesium tablets and Flaxseed capsules helped. Finally he prescribed Mobic and a very low dose muscle relaxer that doesn't make me sleepy. ( I have uncontrollable muscle spasms.) Gratitude helps, as does mindfulness and prayer. I do take one Lyrica in the morning. All of these things came about at approximately the same time. So I take my meds faithfully as well as my supplements. And all the habits of positivity and self care are there for me, every day. I will be thinking of you and sending up prayers for you that you get better. I believe you will! Love and light, MamacitaLucita

@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?…no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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Oh, my, how difficult it must be for you and your husband. I know the reality of dealing with a medical system that doesn't trust their patients or believe them when they say they are in pain. Shots helped me for about one day. Physical therapy helped as long as I continued going. But my Fibromyalgia pain was so bad, I couldn't do the exercises on a regular basis. Hot and cold treatments helped, for a while, but you can't take care of your family while just sitting nursing your wounds. Healthy eating, exercise, supplements appropriate for your conditions. All of these things help. But until the doctors see that his pain is for real, and is taking his life from him, they will continue to prescribe things that won't help. My back brace is wonderful It's sitting in the bottom of the closet because it can only do so much. I have two canes and a walker. With three back surgeries I might need to use any one of them at any time. Oh, and before you have the surgery they tell you that the discs could be damaged again, post surgery. They were right. The only time I was ever given Opioids was after surgery. I cannot give you advice, but I can suggest this: Try everything that has a good success rating with tons of patients. Don't fall for magic pills or miracle juices that fix everything. Tell yourself that you will not stand for this any longer. When you go back to that doctor with your husband, carry a notebook with you with everything he has tried written down in black and white. Dates. Effectiveness. Make sure that he puts down every single activity of daily living that he has trouble with because of the pain. In detail. Don't give up. It took me years to get my specialist to see how much pain I was actually in because I tried to be strong. This is not the time to "suck it up. " Be persistant. Have confidence in yourselves and in your doctor. Believe that he wants to help you! I cannot imagine the pain your husband is having. But I do know chronic pain. And I know help is out there for him. You might even connect with the Mayo Clinic for an appointment. I cannot think of a better place to go for help. God speed you, my friends. MamacitaLucita

@jcherry

Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS (RSD) for 18-19 years. I also suffer with migraines and chronic back pain. I look forward to meeting my fellow chronic pain members,and wish we were all on here for other reasons

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Welcome Janet! So nice to see you here. I have had Fibromyalgia since 1990. I have found that for me, having Fibromyalgia is a deal breaker as far as friends go. Many quit inviting me to events because I would have to say no. Or I would have to cancel at the last minute. I would be interested to hear more of your story. Thank you for posting. @mamacitalucita

@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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@jeanie26. First of all I want to thank you for sharing this story. No one ever thinks" I want to be an addict when I grow up!" I was a volunteer in a treatment facility many years ago. I attended AA meetings and Alanon meetings, along with Co-Dependents Anonymous. In all the groups I attended, in all the meetings I helped to facilitate, not one person ever said that someone forced them to take those pills or pick up that drink. Your precious sister in law was very sick. She needed help, and many hands were outstretched to help her. Including yours. But she was so far down, her thinking was so far gone, that she wasn't thinking clearly when she made that choice. There is nothing more that you could possibly have done to help her. I realize that my saying this probably doesn't mean a whole lot. You don't know me. Let me tell you who I am. I am just somebody who has lost more people than I want to think about to this crazy, mixed-up world of addiction. You are a person with a great heart for others. I am so sorry for your loss, for your pain. You tried. You really did. I myself have been so down with depression before that I didn't know how many days I had worn the same clothes. Depression robs you of your life. It isn't just sadness, it's words coming at you that won't leave you alone. "You're worthless. You're no good. No one would miss you when you're gone." It brings people to a solution that is no solution at all. Just more heart ache. Your posting helps others to understand that Narcotics are to be avoided if at all possible. Your caring heart makes sure that others see what a slippery slope taking strong medicine is. There is a time and a place for everything. But as a rule, we should all try everything we can to get ourselves better, to avoid the path of addiction. Thank you again for sharing. Love and light, @ mamacitalucita

@lioness

@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

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@lioness, this is @mamacita. Hello! I totally agree with what you said. Almost every single thing I have tried for my Fibromyalgia and Arthritis, Spinal Stenosis, and DDD, has helped tremendously. I started on low dose new meds about the same time I started the new supplements. So I have to give credit to both paths! Thank you for sharing! Love and light, @ mamacitalucita

@lioness

@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

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@mamacitalucita your welcome the magnesium works great for me I use Epsom salts when I bath I don't know if your aware of Dr.Teals Epsom salts shower soap and also a rub ,like Ben gay Dr.has had me on Tramadol and it works for me wishing you the best

@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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whs66 what’s in the pain pump ?

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