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.

@orygun66

Hi Sharon.

You say another knee replacement, is this the other knee or a revision? Knee replacement is partly how I ended up on pain meds. I've had 10 surgeries on my right knee and now need a left knee replacement. Who are you concerned about that will accuse you of self-medicating? If it is someone not familiar with pain the best thing you can do is educate them. Tell them what the pain is like and how it affects your life. I don't know that the same approach would work with a health care provider. My doctor didn't seem to care at all how low my quality of life was.
I understand feeling alone. Having just moved to Minnesota six months ago and not knowing anyone, it's very hard. I go online to chat with people. Any possible way you can connect with people who will be understanding. It helps lessen the loneliness I've found.
I don't know if that helps any but I wanted to let you know someone was listening and understands.
Hugs 🤗
Patti

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Dearest, orygun66. You know pain. I find your words to Sharon (and the group) to be very wise and ever so encouraging. I don't think medical professionals know how to deal with the pain of others. And how could they when they have a patient like me who struggles to address pain levels from 0-10: pain levels that can change throughout a 24 hour day?!@#&* Pain levels that can change within minutes while you're engaging in a conversation with them. And if the medical professionals can't understand it, how can in-home health care workers?

What most persons don't seem to grasp is there is a definite difference between pain discomfort which can be annoying and change our moods ... to hard core pain that hurts so bad it puts a heavy strain on every muscle and nerve ending in our bodies, rendering us helpless. And also, just talking about the pain we have, while going through it, can be debilitating because not everyone around us understands it. Health care workers may feel helpless. And that's why we need to be open and honest with them. Pain, whether physical, emotional, or mental is so personal. You can't file it away in a box and place a label on it.

I really love this group. This is a place where you can vent and "let it all hang out." This is a place where you can find friends who do! understand you. Thanks, Patti, for being you. Sending agape love to everybody. Hugs, CB

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Hi I'm Nuri and I've been suffering from fibro and chronic pain for the last 19 years.....I'm on a "cocktail" of lyrica, hydrocodone and belbuca...which helps me most so far....does anyone have recommendations for a different/additional cocktail to help me be able to get out of bed and stay out for more than one half hour?

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My name is Carla, I am 66 years old. I have osteoarthritis of a 90-year-old woman, I also have spondylarthritis mid-back. In 2010, I was tboned at a stop sign! This was a miracle I wasn’t killed but resulted in giving me whiplash and a herniated disc in my neck. This is setting on my spinal nerve, causing stenosis. I was told I have fibromyalgia a few years back, but I feel like old injuries from an abusive ex are contributing to chronic pain and fatigue. So I have never been a complainer and it’s difficult to describe my pain experiences . My quality of life is very poor since the drs are not prescribing pain meds nowadays! Sometimes I am unable to function and just lay down most of the day. I was an environmental scientist prior to the wreck and specialized in ecosystem management. Perhaps in the support group, I’ll be able to help others navigate the many options available to help us live with our chronic pain. I have never joined the Support group before and look forward to the discussions. I have found that deep tissue massage helped me immensely, but of course the insurance does not pay for that, and now I am disabled and cannot afford them… Lol. I have tried acupuncture, chiropracty , and massages. In the past, I was able to get enough pain relief with massages , and opiates. My blood pressure remained normal but when I am in pain, I have running blood pressure and it spikes extremely high. I do not understand why doctors feel that extremely high blood pressure and limited activity is acceptable as opposed to taking pain pills and being able To function each day with normal blood pressure levels. Prior to the accident, I was never a pill taker – after the accident I had to resign myself to the fact that I would probably need pain medication for the rest of my life. I would rather take a few pain pills and be able to cook meals enjoy fishing,playing with the grandkids , doing yard work, etc.

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@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don't have pain in the sense of "hurt", but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks--there's nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I've said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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There are glasses that are specifically made for dry eye relief. They keep the moisture in. There is a dry eye group on line that sells them. I don't remember the name. Or you can google. Good luck!

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@csvhough

My name is Carla, I am 66 years old. I have osteoarthritis of a 90-year-old woman, I also have spondylarthritis mid-back. In 2010, I was tboned at a stop sign! This was a miracle I wasn’t killed but resulted in giving me whiplash and a herniated disc in my neck. This is setting on my spinal nerve, causing stenosis. I was told I have fibromyalgia a few years back, but I feel like old injuries from an abusive ex are contributing to chronic pain and fatigue. So I have never been a complainer and it’s difficult to describe my pain experiences . My quality of life is very poor since the drs are not prescribing pain meds nowadays! Sometimes I am unable to function and just lay down most of the day. I was an environmental scientist prior to the wreck and specialized in ecosystem management. Perhaps in the support group, I’ll be able to help others navigate the many options available to help us live with our chronic pain. I have never joined the Support group before and look forward to the discussions. I have found that deep tissue massage helped me immensely, but of course the insurance does not pay for that, and now I am disabled and cannot afford them… Lol. I have tried acupuncture, chiropracty , and massages. In the past, I was able to get enough pain relief with massages , and opiates. My blood pressure remained normal but when I am in pain, I have running blood pressure and it spikes extremely high. I do not understand why doctors feel that extremely high blood pressure and limited activity is acceptable as opposed to taking pain pills and being able To function each day with normal blood pressure levels. Prior to the accident, I was never a pill taker – after the accident I had to resign myself to the fact that I would probably need pain medication for the rest of my life. I would rather take a few pain pills and be able to cook meals enjoy fishing,playing with the grandkids , doing yard work, etc.

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Hi there and welcome. Have yo gone to a Pain Management Group who can tell you whether or not you are eligible for a Spinal Cord Stimulator. I have one in my Lumbar and it has given me 100% relief. I encourage you to do so, if you have not already done that. God bless you, Charles aka brotherchuckles80

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@nanamarcia

There are glasses that are specifically made for dry eye relief. They keep the moisture in. There is a dry eye group on line that sells them. I don't remember the name. Or you can google. Good luck!

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My wife has that condition in addition to calcium deposits. After some research, I found Theraspecs. They have quite an extensive glasses for different eye conditions.

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80 years old male
10 years ago pain pump granulized. Almost lost left leg. Now it’s just very weak. Incontinet bowls. Cath the other way. Multiple backs surguries. Spine is stenosis. Plagued with a series of wounds. New pain pump Figured intrathecal is better than straight opioids less constipation except Dr keeps dosage below what I.need. Pre dementia. Can’t spell

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@orygun66

Hello,

I'm new to the group here. I don't know if I will find the help I need. I moved here from Colorado last December so I could hopefully have one or two knee surgeries. What I didn't count on is Mayo and their anti opioid attitude. My pain treatment plan was working just fine for me. Now I'm being forced off one of my meds and it's greatly reduced my quality of life. I can't engage in exercise because I can't bend my right leg. I guess I would like to know if anyone has found anywhere else in the Twin Cities to go to or has anyone had any luck with edibles, either THC or CBD. I've not tried it. Also, has anyone had luck with Suboxone. Thanks in advance. Maybe I'll be helpful to someone else. I'm also a nurse so that comes in handy.

Glad to meet everyone!

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Good evening, "@orygun66," and welcome to Connect. Thank you, @johnbishop, for the introduction. And welcome to Minnesota. I notice that you are from Colorado. I am from California. I moved to MN in part because of the medical world, especially the quality of medical care.

It surely seems like you have had quite a few TKRs. What has the diagnosis been? How many years have you been coping with knee surgeries and post-surgery recovery?

My colleague @johnbishop thought perhaps you might be interested in medical cannabis. Right off the bat, I will tell you that I have been using it for about 11 years for shoulder, elbow, ankle, knee, and spinal surgeries. With the diagnosis of SFN (small fiber neuropathy), other types of cannabis have been found that create a more enticing world for me.

Does being a nurse from Colorado mean you are familiar with medical cannabis? If you can share your experiences and inquiries with me, I will try to help you.

May you be safe and free from inner and outer harm.
Chris

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I am Tilou and was in a group for broken vertebra or compression fracture of the spine.. From that problem came, among others, the blue and swollen ankles and also what has been diagnosed as the incurable "Meniere disease". I am looking for maybe other recomendations other than the heavy stockings prescribed by doc.

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After much experimentation with Cannabis I’m using tincture THC 25mg 4x day plus tincture CBD 100mg 4x day. I used to vape but tired of the throat issues and now use low dose gummies when needed. My main pain control for my spinal OA and chronic pain syndrome is buprenorphine 20mcg patch Q7 days. Compared to Suboxone the patch provides 24/7 relief without the need to remember to take pills. I was having dental work performed when I started on this drug and buccal film wasn’t ideal at the time. Good luck on your search for relief.

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