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.

@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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@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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If it hasn’t happened yet it doesn’t have to happen. Always see yourself as not needing a wheelchair. Have you tried meditation?

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@johnbishop

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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Isn’t just the best time, when you are working out? I feel so good that I can beat that cross trainer like it owed me money. Best hour of the day!

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@johnbishop

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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@wsh66 you paint a great picture with your words 🙂

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@johnbishop

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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Thank you.

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@johnbishop

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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It’s just part of being terminally hip.

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How about if everyone who reads this fills in the blank. I don’t feel pain when…..?

For me, I don’t feel pain when I’m petting my dogs and they’re showing me affection. Now you try it.

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I don’t feel the pain when…my mind is working overtime doing something fun or interesting.

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@johnbishop

I don’t feel the pain when…my mind is working overtime doing something fun or interesting.

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That works for me too.

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It is definitely helpful to be doing something you enjoy and can still do physically. If you don’t have anything that fits into that space, try something new that is not physical. Anyone started a new activity lately that is undemanding physically?

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