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.

Profile picture for toddgalbrecht @toddgalbrecht

Hello,
This is my last chance for help and truly pray the Mayo clinic can help and not turn their back on me like the UW pain clinic in Madison, WI has to many of their ex patients because they no longer treat pain.

I have been hit by a car 3 separate times in my life. 1st at age 7 crossing the street with a crossing guard and driver ran red light. 2nd at age 12 riding my bicycle and driver ran stop sign and last at age 22 riding bicycle on sidewalk and was hit from behind and left for dead and driver did not stop. I have 7ndergobe 28 surgeries and due to the amount of pain I am in, the severe muscle spasms, not sleeping my BP is threw the roof 267/126 and my UW cardio team even with all the medications adjustments cannot get my BP down and are serious with the pain clinic telling them they no longer treat pain. My primary care doctor doesn't care either and my cardio team has pleaded with her. I am not ready to die. On top of the pain I also suffer with Hypertrophic Obstructive Cardiomyopathy and have suffered 2 heart attacks and a TIA. UW patient relations doesn't care and make excuses for those doctors. They have lied on test results and with my latest CT scan and X-rays proves they were lying. The surgeon that just did my 28th surgery last month said to me, "yes Todd you are complicated, but in no way means we as doctors give up on you like the pain clinic has. You deserve a quality of life and is our job to make sure you do. I am so sorry that the UW pain clinic gave up on you and their awful treatment of you.".

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Hello

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome Kelly @hoylandk, I'm not sure @wt1413wt is still following Connect since their last post was in 2020. Hopefully members with similar symptoms can share what has helped them. I'm wondering if you might find the following discussion helpful:
-- Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?: https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/.

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Thank you. I have put a message on there.

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Profile picture for hoylandk @hoylandk

Hello
I know this post is a few years old but I seem to be experiencing the same symptoms as you. Have you now recovered and did you ever get to the bottom of it?
Thanks
Kelly

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Hello,

Unfortunately the spasms continue each week with intermittent high level of pain. About every 4 months I have pain too severe to work or sit or stand or lay down. Prescribed meds do t help and really don’t want to be admitted for an IV drip just to go back home. I end up taking 1-2 days from work and stay hydrated. It takes several days to ‘fully recover’. I’ve told my wife the region is never not in a triggered state with a little pain mixed in, and waiting for the next big spasm.

No trend found in foods. Nothing found that exacerbates the spasms aside from stress but even that isn’t a constant trigger. It remains very frustrating, like a spare pick was left inside me, but doesn’t always reveals itself….

Sorry to hear you’re going through this too. If I ever find something that works or the real cause I will gladly share

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Profile picture for jolenehyene @jolenehyene

Hi. My name is Jolene, I'm almost 65, and have had Tourettes since the age of 10. I was recently diagnosed with Tardive Dyskenesia due to 45 years of Tourette meds, a necessary evil. My tics suddenly got worse, and worse, and worse. Then the daily headaches began - different areas of the head affected, different kinds of pain, different degrees of pain - always constant, always right there. The Doctors are unsure as to whether the tics and headaches are related. I just learned today on here of a disease called New Daily Persistent Headaches or NDPH. I have numerous serious health conditions and take a lot of meds. I was given 30 Vicodin with the Dr's warning to "make it last, that's all I'm giving you." I hope to find something better than Tylenol and cbd cream soon, especially now that my headaches might have a name. Thank you for welcoming me and I feel blessed to be here.

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Have any of your doctors suggested treatment for possible "migraines" or "cluster headaches"? God bless you and praying for you to get relief.

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Profile picture for wt1413wt @wt1413wt

Hello,

Unfortunately the spasms continue each week with intermittent high level of pain. About every 4 months I have pain too severe to work or sit or stand or lay down. Prescribed meds do t help and really don’t want to be admitted for an IV drip just to go back home. I end up taking 1-2 days from work and stay hydrated. It takes several days to ‘fully recover’. I’ve told my wife the region is never not in a triggered state with a little pain mixed in, and waiting for the next big spasm.

No trend found in foods. Nothing found that exacerbates the spasms aside from stress but even that isn’t a constant trigger. It remains very frustrating, like a spare pick was left inside me, but doesn’t always reveals itself….

Sorry to hear you’re going through this too. If I ever find something that works or the real cause I will gladly share

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Thank you so much for replying. It’s 16 days now and not getting any better. Did you also get indigestion and bloating? If so did that improve and how long did it take. This is all very frustrating. You must be fed up a few years down the line.

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Profile picture for hoylandk @hoylandk

Thank you. I have put a message on there.

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Thank you he sent me a message. Very helpful.

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My name is Sue and I am planning on having a Saphenous Nerve Neurectomy below my knee to eliminate pain caused by nerve compression. I have had two nerve blocks which provided 4-5 hours of pain relief. Any advice?

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Hi Everyone. Im Kitty and I’m new here. Searching for answers and support! I was diagnosed with Degenerative Disc Disease. I had the Anterior Cervical Disection and Fusion. I have been in constant pain for over a year with Occipital Neuralgia. So far nothing works well

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Profile picture for kitty70 @kitty70

Hi Everyone. Im Kitty and I’m new here. Searching for answers and support! I was diagnosed with Degenerative Disc Disease. I had the Anterior Cervical Disection and Fusion. I have been in constant pain for over a year with Occipital Neuralgia. So far nothing works well

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Hi @kitty70 -- I can't solve your issue, but I can tell you I had occipital neuralgia for two years non-stop about 15 years ago. It was intense. I went to see a neurologist because I was beginning to think I had a brain tumor. He told me it was occipital neuralgia and that that typically stems from neck issues. I did have some neck issues so it made sense. The only good news I can share with you is it suddenly went away at some point. It was so long ago and I've had so many disorders that I don't remember any specifics about what I may have done differently. Every now and then I have a brief flare up for a day or two, but that is rare even though I still have neck issues. I hope yours goes away too!!! There is hope!

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Profile picture for finny4606 @finny4606

Have you tried one of the diagnostic clinics such as Mayo, Cleveland Clinic or even one in Houston?

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Hi, no I have not. I recently, found out about the genome sequencing by certain mayo clinics, however I would have to travel and that all, would be costly in my position. I was hoping there was possibly one that I could either send my blood or saliva to, I do not know? I am pretty much at this point , without adequate pain meds & all my so many health issues ....live in unbearable chronic pain to degree pain is forcing me to be in bed because movement is impossible creating pain to worsen & it is pure torture. When it starts getting worse the pinky side palm of my hands turn dark pink.

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