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.

@baxtersmom

@katie215, So sorry that you are having such severe pain. But I write to encourage you to do exactly what you are doing by seeking answers in such places as this. You will find many sympathetic people who will share their stories and their experiences and perhaps you will find some answers. I will briefly tell you my story which is very similar to yours. Recently I began a new pain medication called belbuca which I will tell you about. I can sympathize with you as I have had stenosis at L5S1, L3L4 and L4L5 on both sides along with severe disc degeneration bilaterally and with some of the other things you mention. I have suffered for more than 10 years and had been taking 6 Norco a day until fairly recently which barely made a dent in my pain. I started having severe burning/nerve pain down both of my thighs and after a new MRI was told I was having some stenosis on the right side now along with a cyst at S3S4 on the right side. About 15 years ago we discovered a fairly significant scoliosis and therefore surgery would be life altering and I elected against it. I began to think there was nothing left to try until recently.

Recently my pain doctor suggested I try belbuca. I was very skeptical but am glad I gave it a try. It is a small square sticky patch that you place inside your cheek and wait for it to dissolve. It is meant to last 12 hours so you are relieved of taking so many pills. It is an opiate agonist and antagonist and so is one level below Norco on the drug schedule. I was able to go from 6 to 4 Norco per day with even the lowest dose belbuca patch and am now trying to reduce my Norco further with increasing doses of the belbuca patch. The belbuca has completely gotten rid of the burning pain in my thighs which was extremely severe. I still have some sciatica type pain that runs down my left leg and is quite painful. But I am hoping as I increase the belbuca, I will see more benefit still.

I would encourage you to ask your doctor about belbuca. I hope you have a good chronic pain specialist. I am 64 and even 10 years ago decided that getting a rod in my back with a 9 hour surgery was not for me and so I committed years ago to go the nonsurgical route. I have tried injections and a trial with spinal stimulation without results.

While I am a mentor for the Women's Health group, other mentors for this group may read your post and direct you to some other posts and resources they are more familiar with than I am within the Chronic Pain group. But I saw your post and just wanted to encourage you with my recent experience and let you know that I have found Mayo Clinic Connect to be a wonderful resource with a lot of caring people.

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Hello, so sorry to hear about you= back issues. I recently saw a neurosurgeon and he recommened 2 lactinosopy cervical and lumbar and 2 disc removals. Im getting a 2nd opinion tomorrow. Any recommendations on what I should ask also the belbuca sounds interesting and will ask my pain doctor about it. Thanks for sharing.

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Hello, my name is David I suffer from a rare form of daily headache called NDPH. I have had the same headache 24*7 for the past 5 years

Liked by grandmaR

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@dhramsey

Hello, my name is David I suffer from a rare form of daily headache called NDPH. I have had the same headache 24*7 for the past 5 years

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Welcome David!
I am so sorry for your suffering. What causes this infliction?
Ronnie (GRANDMAr)

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@grandmar

Welcome David!
I am so sorry for your suffering. What causes this infliction?
Ronnie (GRANDMAr)

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A viral infection is most likely the cause, no real know treatments

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@dhramsey Welcome to the forum. So sorry for your persistent headaches. Have you looked into NAD therapy? If you have't google it. I would suggest a call to the Springfield Wellness Center to see if they think they can help you…

Liked by dstewart318

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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Hi,

I'm Mark and without medication I'm not sure I'd have been able to work and enjoy my life over the last decade. I've had multiple shoulder surgeries and a cervical disc fusion at two levels. About 18 mon after fusion I started having pain again and Drs can't agree on whether one of the screws is too long. I'm so frustrated at this point and without pain mess I'd be so much more miserable.

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I'm Mark and I've had multiple shoulder surgeries and a cervical disc fusion at two levels. About 18 mon after fusion I started having pain again and Drs can't agree on whether one of the screws is too long and pushing against my spinal cord. I'm very frustrated at this point. Has anyone had a similar experience?

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@cowboyceltic

I'm Mark and I've had multiple shoulder surgeries and a cervical disc fusion at two levels. About 18 mon after fusion I started having pain again and Drs can't agree on whether one of the screws is too long and pushing against my spinal cord. I'm very frustrated at this point. Has anyone had a similar experience?

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Welcome Mark!
So sorry you are having such pain!
I had 1 cervical surgery to replace disks C5/6 in Feb. 2018 and 1 lumbar surgery to fuse L3/4.
I am thankful that the surgeries worked as far as getting rid of the constant, 24/7 pain I suffered for more than a decade.
The one thing, for me, that I realized, is that in spite of the amount of time that has gone by, I still baby myself as far as the instructions that were given to me after each surgery…..no lifting, bending, twisting, sudden 'jerky' movements, no hyperextending and ot lifting or holding anything heavier than a gallon of milk.
I do my best to follow these rules.

You mentioned that your docs cannot agree if the screws that were used were too long.
What docs do you mean?
If it is not the screws, do they have any other suggestions?
If they do not come up with a plan of action, it might be time for another opinion.

You need to be proactive in your care.
If they can't give you what you feel you need, you might have to try someone else.
After all, it's not like you are asking for anything outrageous!
You want to be pain free!!!
Do your own research into docs who deal specifically with spinal issues such as a neurosurgeon.

Wishing you luck and a pain free day!
Ronnie (GRANDMAr)

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@cowboyceltic

I'm Mark and I've had multiple shoulder surgeries and a cervical disc fusion at two levels. About 18 mon after fusion I started having pain again and Drs can't agree on whether one of the screws is too long and pushing against my spinal cord. I'm very frustrated at this point. Has anyone had a similar experience?

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@cowboyceltic Did one of your doctors actually say that a screw is pushing against your spinal cord? Did they show this to you on your imaging? I am a spine surgery patient with no hardware. I had a C5/C6 fusion and stayed in a collar until fused. If you are not getting answers, you might want to seek an opinion elsewhere. I have had a compressed spinal cord because of a ruptured disk and bone spurs in the spinal canal, and at it's worst, when I bent my neck forward, it caused an electric shock down my entire body. I also had pains everywhere that changed when I changed my neck position or turned my head. It was causing weakness in my arms and legs and spontaneous muscle contractions. Is there a pattern to where your pain is and if and how it changes when you change your body position?
I also have thoracic outlet syndrome which causes my neck and shoulders to be too tight, and I am in physical therapy for that. I had been in PT for TOS a few years, when my spine became symptomatic and then I had my surgery at Mayo. My PT does myofascial release which helps a lot, and it can also address surgical scar tissue in the fascia. With your multiple surgeries, that could be an issue. The fascia binds everything together and when it has restrictions, the body can't move properly and it causes tightness and pain. It could all be related since your neck and shoulders are tied together by muscle. Here is a discussion where you can find out more about MFR. Hardware can fail and screws can break or become dislodged. I have read a lot of literature on that, but If there isn't a change in the hardware since the surgery, perhaps the pain could be caused by scar tissue. I think it was at about 6 months post op, that I had more pain because of tightening scar tissue. Not all doctors know about or understand MFR therapy, but others do.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search

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@cowboyceltic

I'm Mark and I've had multiple shoulder surgeries and a cervical disc fusion at two levels. About 18 mon after fusion I started having pain again and Drs can't agree on whether one of the screws is too long and pushing against my spinal cord. I'm very frustrated at this point. Has anyone had a similar experience?

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@cowboyceltic, Good Morning Mark and welcome. I have read the response from
@jenniferhunter so won’t try to repeat. I do have one question. Where is your pain? In the neck area or are you having pain down your arms? My post surgery pain was the result of a nerve below the surgery that was so bruised and damaged that it will take years to heal. And I have been a hostess for Small Fiber Neuropathy (SFN) in my arms and hands. The screws are fine. I receive MFR treatments every week and use a careful program of medical marijuana to control the level of pain and discomfort. Wishing you to be free of suffering.

Liked by lioness

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Hello everyone,

The time has come to open a new group dedicated to Spine Health. Many of you have already participated in discussions centered around spine health, such as back pain, brachial plexus, disc degeneration, scoliosis, spondylolysis, stenosis, spondylopathy and more. You may notice those discussions have now been moved to the new group.

I invite you to +Follow the new Spine Health group here, https://connect.mayoclinic.org/group/spine-health/. Feel free to browse the topics or start a new one.

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Well, this is it-what I’ve been fearing. My brother and I will be homeless in 2 weeks. I can’t believe it. It’s come down to this-me on disability and him with only a part time job. He’s tried and tried for something full time but his age works against him. And we have a 10 year old dog who we love!!! I can’t believe this!

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@karen00

Well, this is it-what I’ve been fearing. My brother and I will be homeless in 2 weeks. I can’t believe it. It’s come down to this-me on disability and him with only a part time job. He’s tried and tried for something full time but his age works against him. And we have a 10 year old dog who we love!!! I can’t believe this!

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@karen00 I'm so sorry to hear this I wish I could help you have you tried all the different agencies .The homeless population is terrible out here They are talking about converting abandoned motels for the homeless. I'm sorry Karen ☹️ Have you tried to get on Section 8 there ,you pay less on rent government picks up rest

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@karen00

Well, this is it-what I’ve been fearing. My brother and I will be homeless in 2 weeks. I can’t believe it. It’s come down to this-me on disability and him with only a part time job. He’s tried and tried for something full time but his age works against him. And we have a 10 year old dog who we love!!! I can’t believe this!

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@karen00

Just wondering if your 10-year-old dog, is what is keeping you from low-cost housing?

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@hopeful33250

@karen00

Just wondering if your 10-year-old dog, is what is keeping you from low-cost housing?

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@hopeful33250 Hey Teresa, yes that’s part of it. I don’t have children and she’s like a daughter to me! Also, I couldn’t put her in a shelter, statistics have shown there are 3 main reasons people won’t adopt a particular dog- if it’s black, big, and older and she’s all 3. I will die before I see her in a shelter! Plus, where would I go? I’m on oxygen at night and have meds to keep cool during the day! I feel I’m on the edge of a cliff getting ready to fall over.

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