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.

@ramakambhatla

Hi.. Thanks.. I think that I should try "Warm water therapy" for better relief of pain and improve ambulation.

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It's been such a huge help in my quality of life!

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I could get some perspective of the problem of "Chronic Pain" ; but, I am OK and not trying any pain pump, narcotic pain relievers. Just keep busy with either some meditation, yoga, few simple measures that may help. There is no insurance coverage in India, and any expensive procedure,is out of pocket.

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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Hi Terry I'm Linda a retired L.P.N fibro didn't make me retire early s L2fracture did but I have had fibro for 30 yrs on Lyrica @Tramadol but have stopped the Lyrica it was starting to give me some side effects and didn't help much Dr has me on Cymbalta what a difference I do creams one that's good is Arnica Gel I like it.I do Tapping ,do you?if not you can read about it at Tapping.com.In morning my first thing Ii do is take a warm shower and stretch then have cup of f ginger-turmeric tea ,from Trader Joe's Meditation helps I take Fibro Malic from Vitacost has alot of magnesium in it

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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@peach414144, If I was able to march (even walk) I would be involved with these new movements. Look who is in the white house. All he is doing is cutting programs that help the citizens of this country. Can't get too political but the new man in town is not helping our broken system. Try not to think about suicide as you never know if your next day will be a better day or if a cure for your suffering may be discovered.

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@wsh66

When you're looking for a pain management clinic you must realize they fall into two categories. I have encountered both. The first one I went to which is no longer in existence thank God, was based around the idea that everyone's pain medication should be limited or be removed completely. That no one should be on pain medication on a permanent basis regardless of their situation. I went to that clinic and told them I had all the pills that I needed, I had doctors to take care of that but what could they tell me about other ways to deal with my pain. I told him the things that I was doing, Qigong , meditation. They told me that for them to instruct me and alternative therapies would be like taking me out of graduate school and sending me back to kindergarten. In other words, they had nothing to offer me but would recommend to my doctors that I be limited to no more than the equivalent of 100 mg of morphine a day. That was about half of what I was taking at that time. The last time I checked those guys were out of existence. the other kind of pain clinic is the one that I have go to at M Health at the University of Minnesota. They evaluated me both physically and mentally, they realized my need for medication was real and they understood that as time goes by your doses have to get larger to have the same effect. They continue to medicate me four more than a year until I was free of infections which I had encountered in the aftermath of cancer treatment. while I was continuing to get infections they could not risk the surgery of opening me up to put the pump in and thread the catheter up my spine. once I was able to have the surgery I got the pump. I came off my heavy doses of medication almost overnight and experience no withdrawal. No withdrawal because I wasn't an addict, I had never abused my drugs, I had never use them to get high. I had never triggered that response in my brain that goes along with getting high and leads to addiction. this is the piece of the puzzle that's so many doctors do not understand. I continue to go to my pain management clinic and get my oil changed every 3 months. They pump out what's left of the old drugs and they pump in fresh drugs. it's done with a needle in the doctor's office and it takes about 5 minutes. the only pain clinic that I know that operates the way that I described above is the one at M health which is part of the University of Minnesota and the Fairview system. I would hate to be just beginning this journey today with what's going on politically with pain medications.. I think we'll see an uptick in the number of people with chronic depression and chronic pain who unfortunately will take their own lives.

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Have you looked into homeopathic medicine Try to find a holistic Dr.,he ,she can point you into the right direction As a rub I use Arnica gel I like it at times I use CBÐ oil balm Homeopathic has nerve pain meds,pain med and alot more.Tapping is another one I use Tappingsolution.com

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@ramakambhatla

I could get some perspective of the problem of "Chronic Pain" ; but, I am OK and not trying any pain pump, narcotic pain relievers. Just keep busy with either some meditation, yoga, few simple measures that may help. There is no insurance coverage in India, and any expensive procedure,is out of pocket.

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Turmeric@ginger tea I drink a cup every morning

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I am using a gel preparation of Diclofenac for neck pain, and also for right thigh , which is of some relief. (Musculo-arthritic pains are relieved significantly)

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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What kind if pain meds are on

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@cleane1

Hi I am mike from Oregon 30 years logger broken back 20012 several surgery's latter chronic pain just went off veniflxene suffering horrindus withdraws glad to have found this sight

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Hello @cleane1, I'd like to add my welcome to @oregongirl and @jimhd's. You may be interested in checking out the following discussion on back surgeries and chronic pain, https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/.

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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Iran has oil we don’t!

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@lilgrizz

Hello Kelsey, thank you for this group. I don't know where to start describing my pain. My chronic pain runs about an 8 without meds. Don't know what I would do if I didn't have them to help me function. Yes I'm just a lil upset and Trump and the DEA about taking away our meds. I have degenerative scoliosis which I just have had my third surgery for. In April of last year I had two rods screwed into my spine starting at about the top of my shoulder blades down to my tailbone. A month later they went in from the front and fused the bottom part of my spine. Just a month ago I fell in the middle of the night and cracked both rods and had to have surgery again. I have dealt with the pain of scoliosis all my life. I started wearing a brace in the second grade until the 6th grade 24/7 except getting out each day long enough to take a bath. In 2012 I learned I also had multiple sclerosis, lupus and in 1999 I was diagnosed as Bipolar. But between the pain from my back, the lupus, and especially the MS I suffer tremendously. Don't know how I will survive trying to deal with the pain completely by will. I must say I'm very scared.

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@gman007

My pcp manages all my meds. When I scheduled my first appointment with the pain specialist, I was told that he wouldn't prescribe. But, when my pcp was told that he couldn't prescribe more than 100mg of opioids, and I was already over the limit, even though just barely, and if I needed an increase in dosage, the pain specialist would have to approve it to override the limit.

Jim

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@ramakambhatla

Hardly I know, about ESI at a specific site for relief of pain, I am rather perplexed about using pain pump with 100-300 times the relief! Is this being done, at Mayo clinic? I have had an MRI, showing DDD with no information from the few spine surgeons, that I consulted, as to the procedure. Briefly,
a nerve block was mentioned. I am just trying to be happy with the routine
activities, that I am able to do. I would like to know as to how and who is
taking part in this procedure, like : Neurosurgeon, spine surgeon. Thanks for
a reply, in this reference.

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The surgeon at the department of neurosurgery at M Health which is part of the University of Minnesota in planted my pain pump. This Thursday I will go see him and you'll put a needle into my stomach and you'll withdraw all the old medication. He will then put fresh medication in and may or may not increase the dosing level. I have to do this roughly every 3 months. It is a new therapy. I don't know how many places they do it. But it is an answer to chronic pain and it is an answer to the unavailability of opioids. No one gets freaked out about 3 mg of hydromorphone a day. Plus there is absolutely no way the patient can abused this or sell the drugs that they get. It leaves you and your doctor Beyond reproach from the idiots who want to limit people's access to opioids. I saw where you also posted a somewhat negative comment about pain pumps and narcotics that you didn't want anything to do with either. When I hear such responses I wonder how much contempt people have for those who are willing to use opiates. there's a connotation that there's something wrong with using narcotics to ease pain it's the same kind of assumption that a lot of people make about people who use narcotics to ease pain that were really just a bunch of drug addicts. Think about these things before you post them and ask yourself how somebody on the receiving end of these drugs might interpret your comment. I'm sure you had no intention of hurting anybody's feelings but I'm equally sure that you probably did hurt someone's feelings.

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@ramakambhatla

Hardly I know, about ESI at a specific site for relief of pain, I am rather perplexed about using pain pump with 100-300 times the relief! Is this being done, at Mayo clinic? I have had an MRI, showing DDD with no information from the few spine surgeons, that I consulted, as to the procedure. Briefly,
a nerve block was mentioned. I am just trying to be happy with the routine
activities, that I am able to do. I would like to know as to how and who is
taking part in this procedure, like : Neurosurgeon, spine surgeon. Thanks for
a reply, in this reference.

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Yes, I believe that's right. A lot of us have no other options than opiods. I'm personally not a candidate for a pain pump as my pain is from inflammation vs. a mechanical problem, or so I was told by pain management doctor candidate 1. I can't take any nsaids as I've had kidney failure and have chronic kidney disease. I've tried sulfasalizine, cymbalta, gabapentin and all sorts of others and had terrible side effects. So I'm on prednisone for life, Remicade infusions every four weeks, oxycodone, muscle relaxers, meds for depression and anxiety. I also do yoga, breath work, warm water therapy, short walks, stretching, aromatherapy, tens machine, lots of baths and I can't even remember what else. We need to be kind and know that everyone has a story that we don't know.

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@ramakambhatla

The problem that I had with spinal injections to relieve pain, is that, the consultant of spine surgery, did not talk about any fluoroscopy guidance, and I was not willing for a blind procedure. I had a chance to know about a well-
guided injection, and have the website : Mayfield Clinic.com and may try to contact Dr. Marc Orlando.

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I have epidurals at different intervals depending on how my back pain is and you are 100% right in not getting it without the fluoroscopy. I had it blind because I didn’t know better. Now I go to the Comprehensive Spine Center in Rhode Island at the Rhode Island Hospital and most of the time it works wonders. If it doesn’t work as well it’s because I have a lot of scar tissue there. This is a no brained. Good for you. Good luck. @marield65

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@lilgrizz

These are pictures of how I could not stand up straight before surgery and the hardware they put in me.

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Hi I am Marield65 and am curious about what kind of hardware and for what reason because I have hardware in my spine for a fusion and after 10 years I need another fusion.
Thank you. @marield65

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