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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.

Faithwalker007 (Renee) | @faithwalker007 | Oct 17, 2020
In reply to @ellens "PS--Prior to my finding the sympathetic provider in MT I had an MD who did give..." + (show)
@ellens

PS--Prior to my finding the sympathetic provider in MT I had an MD who did give the hydrocodone that I needed for RA pain and guess what? He had Federal agents coming to his home to investigate him and he had a family. This is beyond excessive in my opinion. My present rheumatologist won't go near the subject of opioids.

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Those examples are rampant in Wyoming. That’s why we only have 15 specialists remaining.

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ellens | @ellens | Oct 17, 2020
In reply to @lioness "@woogie When my friend who had the NDE told me what it is like beyond the..." + (show)
@lioness

@woogie When my friend who had the NDE told me what it is like beyond the veil I was in awe of her experience

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I have lots and lots of books about the near-death experience. I, too, have been in awe of the experiences people have had. I have gathered that it is not productive to commit suicide unless maybe there's no hope for recovery. We do not have answers for this. I think it's neat that you actually have a friend who had an NDE! My brother rose up out of his body once while he was sick at home and looked down at his body from the ceiling. My father appeared to my mother after he died. She touched him and he was solid! I've heard of the astral body and think that's what he was in at the time.

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1 reply
lioness | @lioness | Oct 17, 2020
In reply to @ellens "I have lots and lots of books about the near-death experience. I, too, have been in..." + (show)
@ellens

I have lots and lots of books about the near-death experience. I, too, have been in awe of the experiences people have had. I have gathered that it is not productive to commit suicide unless maybe there's no hope for recovery. We do not have answers for this. I think it's neat that you actually have a friend who had an NDE! My brother rose up out of his body once while he was sick at home and looked down at his body from the ceiling. My father appeared to my mother after he died. She touched him and he was solid! I've heard of the astral body and think that's what he was in at the time.

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@ellens I had a out of body once. I was on the highway I looked up at a beautiful cloud before I knew it I was up to the cloud I guess my senses took over and I remember saying who,s driving the car like lighting I was back on car

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 17, 2020
In reply to @bustrbrwn22 "@artscaping I am continuing the myofascial treatment. My hamstring is having less pain as are the..." + (show)
@bustrbrwn22

@artscaping I am continuing the myofascial treatment. My hamstring is having less pain as are the sides of my calves. I think I’m at session 7 or 8 and I think that is pretty good results. I am using my TENS unit as the pain meds had no effect on my feet pain today but the TENS unit is helping tremendously. It would be much better if the electrodes were Bluetooth to the main TENS unit instead of those stupid wires. I could then get around without tripping on them. Thanks for asking

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@bustrbrwn22 Hi there, good for you.....how often do you have sessions in a week. Here is what I am doing. I am testing a twice a week series of MFR sessions. Is it possible that I can improve my quality of life by just adding one more MFR session per week? If so, can I hang back from some of the other pain control medications I am taking?

I am already noticing that I can make it much more comfortable with twice a week. However, the first session with greater intensity for the lower body parts led to the upper body complaining because it was ignored. Truly....I was sort of shocked. Anyway....we have now evened up the treatment locations and degree of treatment. Gotta keep those shoulders and that neck happy.

May you be free of suffering and the causes of suffering.
Chris

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rseago87 | @rseago87 | Oct 17, 2020

Hi all!

I am hoping this will provide another resource in everything I've been going through the last year.

Last fall I started experiencing daily sharp, stabbing headaches that would come and go all day long. My GP referred me to a neurologist as I already suffer from migraines and she felt that would be best for treating two headache disorders. Through a process, we got them under control with indomethacin. The initial diagnosis he gave me was indomethacin-responsive trigeminal autonomic cephalalgias. For seven months, I had no headaches, unless by my own fault I missed a dose. In August, the headaches flared up despite the medication, though not as severe as last fall, which has been very discouraging as once again I am in daily pain at various levels off and on throughout the day, and finding a solution has been challenging both on the medicinal side of things and in working with my neurologist. This Tuesday I'll try and SPG block for the first time which I'm hoping will at least provide some temporary relief. Until that relief comes, I will continue moving on one day at a time as that's all you can do.

Rebecca

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2 replies
Faithwalker007 (Renee) | @faithwalker007 | Oct 17, 2020
In reply to @ellens "How do you get your opioids? Do you have a sympathetic provider? I had one in..." + (show)
@ellens

How do you get your opioids? Do you have a sympathetic provider? I had one in MT but for all I know she could have since been intimidated by the drug police. The small supply of hydrocodone is left from what she gave me and I moved from MT back to MN over 3 years ago.

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When my pain specialist tried to lie and taper me, I involved my US Senator, John Barrasso. I proved that the CDC Guidelines were not written for Chronic Pain patients by the CDCs own warning letter issued after they were released (check the site).
I proved that opioids are necessary for quality of life and I’m not a seeker— I’ve never broken a contract by shopping illegally for my medications, pharmacy hopped, or had another doctor prescribe them.
The decrease was unwarranted, unnecessary, and fully driven by DEA pressure.
Barrasso got involved and it was quickly and forthrightly halted.

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1 reply
sunnyflower | @sunnyflower | Oct 17, 2020
In reply to @sunnyflower "Hello ellens, @lioness, @faithwalker007, yes, the non-legit substance abusers and their tragic overdoses have caused a..." + (show)
@sunnyflower

Hello ellens, @lioness, @faithwalker007, yes, the non-legit substance abusers and their tragic overdoses have caused a great deal of opiophobia in the medical community and also tragically, because of this there is some substandard care going on. If only people understood that patients with legitimate pain do not get high from opiates nor does it really take away our pain rather helps us not to jump or pull the trigger. I have been the victim of stigma on more than one occasion and it has made me feel so awful and has changed my entire life because of it. The judgments and opinions are everywhere. It will take a lot of Education to help people understand but I don't see that happening in the media anytime soon rather only, the opposite is what I see all the time. Never do I see opiates indoors for legitimate pain in the media or talk shows Etc.

Warmest regards to all of you and prayers for relief! Sunny flower 🙏🌹😊

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Dear Ones,
I realized that I left out an incredibly important piece of info in this post. That is that the head of the Kaiser Permanente Opiate Oversight Management Team, who happens to be a Psychiatrist (there are many disciplines on the team), met with my husband, PCP and I, quite some time ago, to tell me they validate me and my need for morphine! She was adamant that we knew and understood the team felt this way! I about died of shock LOL!! I have been on pretty much all of the opiates over the past many years (27+) I think.
I wish the same validation, respect and relief for all of you! Warmest wishes, Sunnyflower. 🙏😊🌹

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1 reply
suzanne2 | @suzanne2 | Oct 17, 2020
In reply to @rseago87 "Hi all! I am hoping this will provide another resource in everything I've been going through..." + (show)
@rseago87

Hi all!

I am hoping this will provide another resource in everything I've been going through the last year.

Last fall I started experiencing daily sharp, stabbing headaches that would come and go all day long. My GP referred me to a neurologist as I already suffer from migraines and she felt that would be best for treating two headache disorders. Through a process, we got them under control with indomethacin. The initial diagnosis he gave me was indomethacin-responsive trigeminal autonomic cephalalgias. For seven months, I had no headaches, unless by my own fault I missed a dose. In August, the headaches flared up despite the medication, though not as severe as last fall, which has been very discouraging as once again I am in daily pain at various levels off and on throughout the day, and finding a solution has been challenging both on the medicinal side of things and in working with my neurologist. This Tuesday I'll try and SPG block for the first time which I'm hoping will at least provide some temporary relief. Until that relief comes, I will continue moving on one day at a time as that's all you can do.

Rebecca

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@rseago87 A suggestion for future reference, is looking into the Michigan Head Pain Clinic in Ann Arbor. I was seen as a patient at the clinic and also hospitalized two times at their inpatient facility. I now suffer from only occasional migraines. Dr Joel Saper was the founding neurologist and patients come from across the U.S. and foreign countries. The first time I was an inpatient for 4 weeks and the second time for 2 weeks. I don't know everything about your circumstances but they were able to help me. I am sure there is information online that might indicate if they would be a source of help for you.

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1 reply
sunnyflower | @sunnyflower | Oct 17, 2020
In reply to @faithwalker007 "I agree. We do have a small glimmer of hope of the horizon however in the..." + (show)
@faithwalker007

I agree. We do have a small glimmer of hope of the horizon however in the New Hampshire Bill passed called HB-1639-FN. This Bill protects chronic pain care patients and their doctors from the CDC guidelines as well as much more.

I’m in contact and negotiating similar legislation for the state of Wyoming as we speak to protect those with chronic pain here with the backing of the Wyoming Independent Living WYDPAC Committee, WY Council of the Blind, and many more. I’ve already got almost 50 signatures in the petition and it’s only been circulating on Facebook for 4 - 5 days?

I don’t have the money to promote the thing so I’m doing so the sharing and promotion on my own which as you can imagine is not much with my pain level.

Why would Wyoming make a difference? Because most of our state go to out of state providers who are licensed by the State in order to get paid by Medicaid.

Which states am I talking about? South Dakota, North Dakota, Nebraska, Colorado, Utah, Idaho, and Montana.

Wyoming knows how and when to make an impression. We’re sincere, honest and know how things are nil C

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Hi Renee, thank you for all you are doing to help so many! Bless you girl for your efforts in the midst of your pain! Wow, you are an inspiration! I 've never heard of this before. How can I help if I am able? Warmest regards, Sunnyflower. 😊🙏🌹@lioness, @ellens @jesfactsmon

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1 reply
rseago87 | @rseago87 | Oct 17, 2020
In reply to @suzanne2 "@rseago87 A suggestion for future reference, is looking into the Michigan Head Pain Clinic in Ann..." + (show)
@suzanne2

@rseago87 A suggestion for future reference, is looking into the Michigan Head Pain Clinic in Ann Arbor. I was seen as a patient at the clinic and also hospitalized two times at their inpatient facility. I now suffer from only occasional migraines. Dr Joel Saper was the founding neurologist and patients come from across the U.S. and foreign countries. The first time I was an inpatient for 4 weeks and the second time for 2 weeks. I don't know everything about your circumstances but they were able to help me. I am sure there is information online that might indicate if they would be a source of help for you.

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Thank you @suzanne2 ! I will look into that clinic as I am researching places to get a second opinion. Thankfully my migraines are pretty well controlled. The TAC headaches are the more significant problem and are much rarer so finding someone who is well-versed in treating them is more challenging but I know there are good doctors out there.

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