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.

@artscaping

And I almost forgot….within the last year….skin test was positive for small fiber neuropathy.

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@artscaping

It’s hard to understand why some of us get hit with so many things.

Have you discussed the possibility of a spinal cord stimulator implant? It’s really helped me. Burst DR is a new technology to look at. It’s what I have, and I don’t have any sensation of it working. Other types give a constant vibration that’s very annoying.

Jim

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@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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Abby I didn’t have knee surgery I had a tumor removed from inside of spine cord I say they cut the spine apart glued and screwed it back together sorry to hear of your pain my pain is for life certain surgery the pain is for life. I have been looked at it as tomorrow is a new day I do the best I can trueheart

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Hi Jim, Thanks so much for your support and suggestions. I have researched and mentioned the Burst DR to my neurologist. That was before my (SFN) Small Fiber Neuropathy diagnosis. It doesn’t appear that it would help with the Myofascial pain. I will discuss it with him again in March. Don’t forget to remind me. (just teasing).

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Hi, Colleen and Kelsey. I am a male 74 years old. I just joined and posted in reply to another tinnitus sufferer. I had a spinal fracture, which has a proper name but it escapes me at the moment, about two years ago from improper lifting a very heavy object, and due to my doctors receptionist forgetting to make the appointment for me with a surgeon in a hospital for spinal surgery plus other delays not in my control resulted in a five month delay between the injury and surgery. He did a procedure of injecting a substance which hardened and lifted the affected spinal area to its correct distance between vertebra, but I have been getting random pains in various areas of my back, when I bend over to do something on one side of my back in the soft area between my ribcage and hip bone, up from there in another area on the same side alongside my backbone when I do something else, and a couple of other places, and these pains get worse the longer I do whatever I’m doing. I sit in my recliner for 15-20 minutes and the pain is gone but when I resume the activity, such as washing dishes, or doing something down on one knee, or bending over to pick things up off the floor, the pain comes back. Painkillers of any kind doesn’t touch it. Aspirin works for a back ache but doesn’t affect this stuff.

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My name is Janis, I’ve had chronic pain for 20 plus years. My paim stimulater was inplanted 1/17.
It rins the entire length of my spine. It does help dealing with the pain, no it don’t stop the pain it help my brain to deal with it.
I also have rods, played and screwd in my clavicle tje help my pain going down my left arm. Also me lower back as well. With in the last two plus years my paim has increased from my geet to my hands and shoulders. I just keep moving, I know one day I may be in a wheelchair. I’m 57

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@janiss Hi, janiss. That’s a rough one you have, I think. But on the other hand, with some help and support from the rest of us on this line you really have something you can offer the world. I hate to say it, but your experience of dealing with pain, and the frustration of wondering what’s coming down the pike next, can be a real lift for others in the same boat….er… And there are many out there who need a friend, a little support of words, touching by simply knowing and recognizing. Anyway, You may be the one who helps some folks keep going when times are very very tough. Honestly, we all need you.

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@larryr

Hi, Colleen and Kelsey. I am a male 74 years old. I just joined and posted in reply to another tinnitus sufferer. I had a spinal fracture, which has a proper name but it escapes me at the moment, about two years ago from improper lifting a very heavy object, and due to my doctors receptionist forgetting to make the appointment for me with a surgeon in a hospital for spinal surgery plus other delays not in my control resulted in a five month delay between the injury and surgery. He did a procedure of injecting a substance which hardened and lifted the affected spinal area to its correct distance between vertebra, but I have been getting random pains in various areas of my back, when I bend over to do something on one side of my back in the soft area between my ribcage and hip bone, up from there in another area on the same side alongside my backbone when I do something else, and a couple of other places, and these pains get worse the longer I do whatever I’m doing. I sit in my recliner for 15-20 minutes and the pain is gone but when I resume the activity, such as washing dishes, or doing something down on one knee, or bending over to pick things up off the floor, the pain comes back. Painkillers of any kind doesn’t touch it. Aspirin works for a back ache but doesn’t affect this stuff.

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Hi Larry I,M lioness I had a L2fracture in my back the Dr.wanted to inject same substance but I refused. I have the same symptoms now ,it’s been 12 year since my fracture.I lay down in afternoon for 30 minutes but can’t @don‘t lift,wash to many dishes at a time and don’t do all my floors like I use to ,you have to learn to pace yourself I did. With a fracture ,the backs aren’t the same as when they where whole.

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@janiss

My name is Janis, I’ve had chronic pain for 20 plus years. My paim stimulater was inplanted 1/17.
It rins the entire length of my spine. It does help dealing with the pain, no it don’t stop the pain it help my brain to deal with it.
I also have rods, played and screwd in my clavicle tje help my pain going down my left arm. Also me lower back as well. With in the last two plus years my paim has increased from my geet to my hands and shoulders. I just keep moving, I know one day I may be in a wheelchair. I’m 57

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@janiss

It’s hard to understand what others experience, especially with regard to pain. I imagine that the stimulator is helping at some level, though my own experience has been that it doesn’t do the whole job.

I have autonomic and small fiber peripheral neuropathy, which is a progressive disease, so I have no knowledge of what a year may bring. I’m trying not to obsess over it, but it’s hard not to think about it.

Do your doctors have any other options to offer you?

Jim

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I am 66 years old and have been a pain patient for about 30 years. I am a cancer survivor and almost every disk and vertebrae of my back is in bad shape. I also have artritis, worn out hip and worn out knees. I’ve had about 9 surgeries, some more successful than others. I am a patient at the M Health Pian Clinic where I had a pump installed last spring.

Reading through these posts I hear a lot of hopelessness and a lack of confidence in doctors and other medical institutions. It’s hard to break out of hopelessness and loneliness. It’s really hard when doctors run from you because they have experienced their forms of hopelessness when treating pain patients or they are afraid of prescribing pain meds. I went through a lot of this. I’ve been a pain patient for more than 20 years. Finding the right doctor changes everything. I don’t know where folks are located but for me winning the pain treatment marathon happened when I got treatment at the Pain Clinic at M Health in Mpls. They didn’t treat me like a criminal because I wanted medication to treat my pain. They understood I had tried everything else, PT, massage, rolfing, injections,ect.ect. ect. They medicated me until the meds stopped working and then they gave me my pump which is really great.

I found several alternative therapies that may not have extincted my pain but they did help end my depression around the pain and gave me a much more positive attitude. I plan to add to this later but now I have to go to the gym. Love and blessings to everyone in this group and see this message.

I did go the gym today, twice. The first time i did 55 minutes on the NuStep cross trainer. It’s a wonderful device. I can’t walk more than 20 feet without using a cane and even with a cane it gets very painful very fast. (I love going to the grocery store daily as It gives me social contacts and the carts make really good walkers.) Sorry, I digress. The NuStep positions your body, (seated, recumbent),in such a way that your back is not loaded at all. You work your arms with a push pull motion and your legs while pushing forward. After an hour or so I’m dripping sweat and feeling the effects on my one good lung. I’ve only been doing this for 3 weeks and it’s getting stronger already. My cancer treatment gave me chronic hospital pneumonia which left me with COPD and my right lung collapsed and the diaphragm paralyzed. With only one to work with I need to make it stronger.

After my workout I took my 31 year old son who has Down’s syndrome to work at the Pizza Barn where he has been a dish washer for the ;last 15 years. Then I went back to the gym for a complete massage with coconut oil and hot rocks. Massage won’t cure your pain issues but think about it. When you have chronic pain how often does your whole body feel really great for a solid hour? Every muscle, every joint every pore on your skin is transformed into an instrument of pleasure. We’re usually happy to just not hurt. This is way beyond just not hurting. This is pleasure. Your body, the source of your pain, the source of all your displeasure and you depression is transformed into the source of your pleasure. The warm oil, the hot rocks the masseuses powerful and skilled hands. It’s just wonderful.

Alternative therapies like Massage, Qigong, Yoga, Thi Chi, Acupuncture, tapping, (Thought Field Therapy), and Healing Touch may not cure you. They might not replace your drugs or your spinal stimulator or your surgeon but they do all contribute to improving your general sense of well being and when that happens your pain or your experience of your pain lessens and improves. These alternatives may not be founded in modern science, you may nor be able to test them and produce repeatable results but they are not scalpels and pills nor are they parlor tricks and yes they don’t work for everyone. You’re dealing with nontraditional healers and you must have confidence in them and in what they do. They are bringing you gifts that existed for thousand s of years before there was modern medicine. Many of the oldest come from the east where they had highly organized bureaucracies, organized cities and libraries while we of European descent were still running around hitting each other with rocks. These are not stupid peoples. They hung on to things like Qigong because they work.

I don’t use Homeopathy. I do or have used Qigong, massage, Cranial sacral Release, Yoga, Tapping and Healing Touch. In fact, tomorrow afternoon I’ll be receiving Healing Touch for an hour and a half and I’ll be getting from a RN who has worked at our local Fairview clinic for years.

I’m in pain right now as a result of my workout. However the trade off is worth it. The exercise and the massage elevate my mood so much that dealing with my pain is easier. In many periods over the past 20 years I have been as miserable and hopeless as anyone who checks in here. I have all of modern medicine and several great doctors at my disposal and we have run out of answers. They do all they can and they do a great job but I still have significant pain. There are other answers to turn to and not just alternative therapies. It gets down to individual choices and attempts to improve ones mood and one’s outlook of life. The only alternative I refuse to entertain is to give up.

I wish you all Love and Blessings.

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Hello @wsh66, Thank you for sharing such an inspiring story. I love your outlook and your ability to look on the bright side with a willingness to try alternative therapies to find something that gives you some relief. I have trouble walking very far without pain from my lower back. I have been using a recumbent exercise bike four to five times a week for 30 minutes in the morning to keep up my leg strength but the NuStep Crosstrainer you mention sounds like it would be even better since it also helps with the arms. I think I’m going to have to check out the local gyms to see if one is available. Thanks again for all your suggestions and sharing what treatments you have used.

John

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I have chronic back pain and sciatica since a car accident in July 2017. I’ve done physical therapy for 4 months had 2 epidural injections and just finished 2 weeks of chiropractic therapy.
Nothing has relieved the pain.
I’m trying to avoid a second surgery.
Any input and help would be greatly appreciated.

Liked by Stephen

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@vdrgwr

I have chronic back pain and sciatica since a car accident in July 2017. I’ve done physical therapy for 4 months had 2 epidural injections and just finished 2 weeks of chiropractic therapy.
Nothing has relieved the pain.
I’m trying to avoid a second surgery.
Any input and help would be greatly appreciated.

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@vdrgwr I’m sorry you are still having pain. Many of our members have talked about how acupuncture has helped them through some of their pain.
You may also want to check out the following discussions as they will have members who will understand what you are going through and talking about some of the things they have done to cope:
– Back injuries & Treatment, Introduce Yourself, https://connect.mayoclinic.org/discussion/back-injuries-treatment-introduce-yourself/
– Surgical solutions to chronic cervical/back pain, https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/
– Back Surgery – https://connect.mayoclinic.org/discussion/i-have-had-3-back-surgeries-with-negative-results-in-addition-the/

What kind of surgery did you have on your back?

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@vdrgwr

I have chronic back pain and sciatica since a car accident in July 2017. I’ve done physical therapy for 4 months had 2 epidural injections and just finished 2 weeks of chiropractic therapy.
Nothing has relieved the pain.
I’m trying to avoid a second surgery.
Any input and help would be greatly appreciated.

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I embrace a lot of alternative therapies but I only really came to use them when drugs stopped working or only gave me partial relief. I know it’s an out of vogue suggestion but narcotics do work and stopping your pain even for a short time gives you a window of opportunity to take control of your situation. Drugs ended up being an incomplete answer for me but for years they gave me a life. When the time came to move to a pain pump, which by the way is my main source of relief, my oral narcotics were cut down very rapidly, like over night. I had no withdrawal symptoms at all. That’s because I never used my narcotics to get high and therefore my brain was never flooded with dopamine which is what causes addiction. To anyone using narcotics: titrate your med slowly to make sure you use just enough to make your pain something you can live with. Now it’s time to hit the gym and the NuStep machine. I’ll be going back later for an hour long Healing Touch session with an RN who is giving away 100 sessions as part of her training. Lucky me.

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@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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Right on!!

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The opioid epidemic sucks. They can’t seem to do anything about the abusers so they’re taking it out on legitimate pain patients. That’s how it seems to me. It’s not my problem anymore because I have an Intrathecal Pain pump surgically installed in my abdomen. If you’re not familiar with this device it is a small pump which delivers, in my case, 2.75mg. of Dilaudid every 24 hours. I have a remote control device that will deliver 1/10th of a mg. up to 10 times in 24 hours. 3.75mg. may seem like a tiny dose but when it is dripped into your spine via a catheter it is up to 300 times more effective than when taken orally. Not only does it give me relief but it means I am beyond suspicion of being a drug seeking, low life who just wants to get high bad person. Which by the way, is how I was made to feel before I found my way to the pain clinic at M Health. I’m sure that many of you have had that experience when seeking relief for your pain. Despite the fact that both nurses and doctors are told in medical schools that they cannot make accurate judgements about how much pain you have or if your in pain at all, this doesn’t stop many of them from doing so. I Once heard a nurse on a call in radio show state that he could tell within 30 seconds of your arrival in his presence weather or not you were a drug abuser. What arrogance. When I first went to the Pain Clinic at M Health I was immediately accepted and was not made to feel like a criminal. My narcotic doses were raised to effective levels and I got relief for the first time in a long time. I must add that I had experienced this kind of treatment at the hands of two my doctors before. Other doctors I encountered over 30 years a pain patient were not so kind. In their defense I must site the fact that doctors are under a lot of pressure to not use narcotic and are under a great deal of negative scrutiny if they do.

The pain clinic at M Health. They had it all. Any thing to relieve pain was available. Electro stimulation had not worked for me but when they tested me for intrathecal medication it was obvious that it would be the answer. However I was recovering from Sarcoma or actually I was recovering from the chemo that saved my life. My immune system had developed the nasty habit of crashing without notice and landing me back in the hospital several times, They couldn’t risk the surgery for the pump due to the fact that an infection could have killed me. Only after I was infection free for a year and my cancer doc gave me the go ahead could I get the surgery. During that year I had a lot of control over how many narcotics I would take. Flash: when the patient has that control they tend to use less and it becomes more effective because the stress of, “will I get what I need” is out of the picture. Anyway, by the time I was about to get the pump, narcotics had either become ineffective or my pain was too great for any safe level of dosing. This can happen, the drug that gave you such great relief just doesn’t work anymore.

For most of the day the pump eliminates my pain when seated or lying down with something under my knees, Unfortunately by the end of the day, sitting in a straight back chair becomes very uncomfortable which is bad because that’s when I want to practice my guitar. When I could no longer work as a glass artist I started playing and signing both for fun and as a job. Cancer and it’s aftermath have taken me out of the ranks of professional players for now although I’m working very hard to jump back in. Singing with one lung does present certain obstacles to be overcome. I’m hopping my work on the cross trainer with strengthen my lung enough to remedy that problem.

If the reality is that you’re going to be in pain for the rest of your life then the risks of a surgery every four or five years to install and replace a pain pump is, I believe, a risk worth taking. The only other thing it requires are quarterly visits to the Pain Clinic to get your old drugs removed an replaced with fresh ones. This is done in the doctors office with a needle and take s about 5 minutes.

Once you have it, (the pain pump), you are beyond reproach concerning narcotics. No drug addict is going to willingly replace their script for large doses of oxycontin or morphine with 3.75mg of a drug which impossible to abuse or to sell to others.

I should also mention that if you are a patient for whom narcotics aren’t the right solution or if you are misusing them, the pain clinic will help you find better alternatives but it won’t be snap decision made by some fool who thinks he or she has some sixth sense that allows them to recognize the drug abusers at first glance. Good luck with your journey. Don’t give up even if it takes a long time, there is an answer for you.

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