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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.

Profile picture for kayraymat
kayraymat | @kayraymat | Jun 15 8:17am
In reply to @gypsyblue "@kathrihe, I tried Gabapentin and Lyrica. Both made me feel terrible mentally and physically. Cysts are..." + (show)
Profile picture for gypsyblue @gypsyblue

@kathrihe, I tried Gabapentin and Lyrica. Both made me feel terrible mentally and physically. Cysts are fluid filled and they can come and go. Unless they get really large and are compressing the nerve, I will leave them be. My mother had neuropathy severely in her arms and she took gabapentin 2700 mg three times a day. It was the only thing that helped her in addition to opioid medication’s. Doctors usually start you on the lower dose and then continue to increase until you find a level of pain control. I am fortunate that the opioid medication’s do not affect me other than normal side effects such as constipation, etc.. I don’t feel foggy or goofy and I definitely don’t feel as bad as I did with the gabapentin. I have a few other autoimmune issues that the opioid medication is helping also. I also have a history of multiorgan histoplasmosis, so I am not a candidate for biologic medication’s to treat some of my other autoimmune issues. I hope to avoid surgery as long as possible! Maybe you will get lucky and your cysts will dry up and leave you alone. Hopefully they can determine what is causing the cyst and maybe address that issue so you can avoid surgery too 😊.

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@gypsyblue
What do you do about the constipation?
I tried Miralax powder & ended up with cramping & diahrea. K

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4 replies
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frodo777 | @frodo777 | Jun 15 8:39am
In reply to @kayraymat "@gypsyblue What do you do about the constipation? I tried Miralax powder & ended up with..." + (show)
Profile picture for kayraymat @kayraymat

@gypsyblue
What do you do about the constipation?
I tried Miralax powder & ended up with cramping & diahrea. K

Jump to this post

@kayraymat
As a long term pain med user, my best advice is to eat 2 or 3 prunes per day, keeps me regular!

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3 replies
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linda86 | @linda86 | Jun 15 2:08pm
In reply to @frodo777 "@kayraymat As a long term pain med user, my best advice is to eat 2 or..." + (show)
Profile picture for frodo777 @frodo777

@kayraymat
As a long term pain med user, my best advice is to eat 2 or 3 prunes per day, keeps me regular!

Jump to this post

@frodo777 I saw you also have taken pain meds for a long time. I wonder if anybody is having a problem like mine. I do not know for sure but reading up on my problem makes me think is because I have taken OxyContin for over 30 years. I get HOT HOT when no one else does. I get teased about going thru the change but I am 87. In research I read that OxyContin can mess up your hormones and thyroid. Just wonder if anyone shares this problem. I have been afraid to talk to
My Doctor about it because they will think I am crazy.

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3 replies
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kayraymat | @kayraymat | Jun 15 3:30pm
In reply to @frodo777 "@kayraymat As a long term pain med user, my best advice is to eat 2 or..." + (show)
Profile picture for frodo777 @frodo777

@kayraymat
As a long term pain med user, my best advice is to eat 2 or 3 prunes per day, keeps me regular!

Jump to this post

@frodo777
I will try that. I do eat prunes & drink prune juice but not on a regular basis.
Time to do it on a "REGULAR" basis= regular, get it.... 🙂
Thank you. K

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1 reply
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hk3jnic5y0okl2 | @hk3jnic5y0okl2 | Jun 15 4:48pm
In reply to @linda86 "@frodo777 I saw you also have taken pain meds for a long time. I wonder if..." + (show)
Profile picture for linda86 @linda86

@frodo777 I saw you also have taken pain meds for a long time. I wonder if anybody is having a problem like mine. I do not know for sure but reading up on my problem makes me think is because I have taken OxyContin for over 30 years. I get HOT HOT when no one else does. I get teased about going thru the change but I am 87. In research I read that OxyContin can mess up your hormones and thyroid. Just wonder if anyone shares this problem. I have been afraid to talk to
My Doctor about it because they will think I am crazy.

Jump to this post

@linda86
Hi Linda,
I am 78 & have had 2 discs removed L5-S1 in 1979 & L4-L5 in 1988.
I take 100 mg of Lyrica 3 times a day (6 or 7 am, 11:30am & 4:30 pm. I also take 30 mg of Amitriptyline at 9:30 pm to get 6 - 7 hrs of sleep. P.S. I use my cellphone to alert me when it is time to take drugs, except when I wake up. Really effective.
However, when I suffer from occasional severe neuropathic pain episodes of 4 - 8 hrs or sometimes 2 - 4 days, I take Nucynta IR since it was introduced in Canada in 2017. It is amazing because it allows me to eat anything & after the episode I can read, watch TV, & enjoy life. Before Nucynta IR, I took Oxycodone from 2000 - 2016 to manage severe neuropathic pain episodes & had issues with nausea & sleepiness which interfered with my ability to work or travel.
Good luck

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1 reply
Profile picture for frodo777
frodo777 | @frodo777 | Jun 15 5:43pm
In reply to @linda86 "@frodo777 I saw you also have taken pain meds for a long time. I wonder if..." + (show)
Profile picture for linda86 @linda86

@frodo777 I saw you also have taken pain meds for a long time. I wonder if anybody is having a problem like mine. I do not know for sure but reading up on my problem makes me think is because I have taken OxyContin for over 30 years. I get HOT HOT when no one else does. I get teased about going thru the change but I am 87. In research I read that OxyContin can mess up your hormones and thyroid. Just wonder if anyone shares this problem. I have been afraid to talk to
My Doctor about it because they will think I am crazy.

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@linda86
Hi Linda

Absolutely I have challenges with body temp. ! The only thing I have found is to make dang sure I take my meds on time everyday, even when my pain is lower. I'm 71 and just hate the hot flashes.

I would love to hear thoughts from others !!

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muncie22 | @muncie22 | Jun 15 6:05pm

In May 2018 I had posterior cervical fusion from C3,4,5,6.
I’m upset now bc I had No symptoms before surgery. No Pain, weakness, numbness, nothing except my MRI showed normal age related stenosis, I was 61 years at that time. I trusted the orthopedic spine surgeon. Big mistake. He did a good job scaring me to do the surgery.
Jan 2021 chronic pain started. Each year it got worse, tried all the injections available with no results.
June 2024 tried Abbott spinal cord stimulator trial with no good results. Nov. 2025 tried Nevro high frequency SCS that made me feel horrible.
I’m on daily Morphine 15mg tabs 2x daily with very little help; I built up a tolerance.
Neck pain is 20 hours a day; I suffer eating in excruciating pain at dining table each meal, sitting on toilet is painful; walking is painful. By dinner time I’m so depressed. I have to pray so I’ll be able ok to floss and brush my teeth every day.
Full shower Bath is in very high Pain; I have to bathe in morning bc I can tolerate the pain and have to listen to oldies music to help Refocus my mind and to keep telling myself bathing is good exercise. Also have to constantly Distract myself by imagining my good times with family.
I have to take Valium 5mg tab to help me sleep every night.
I’m in pain as soon as I open my eyes in morning at 3:00 am.
I don’t know what to do.
I see via Chronic Pain Psychologist via Zoom every two weeks.
Thanks for listening!

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2 replies
Profile picture for muncie22
muncie22 | @muncie22 | Jun 15 6:53pm
In reply to @kayraymat "@gypsyblue What do you do about the constipation? I tried Miralax powder & ended up with..." + (show)
Profile picture for kayraymat @kayraymat

@gypsyblue
What do you do about the constipation?
I tried Miralax powder & ended up with cramping & diahrea. K

Jump to this post

@kayraymat
Have you tried a prescription med. LINZESS for constipation?
Talk to your gastroenterologist about LINZESS capsule.

It’s easy on my stomach and I supplement that with Prunes and Mandarin oranges 🍊
I have to take it bc of daily Morphine which causes constipation.
Good luck

REPLY
1 reply
Profile picture for luppychic
luppychic | @luppychic | Jun 15 7:24pm
In reply to @muncie22 "In May 2018 I had posterior cervical fusion from C3,4,5,6. I’m upset now bc I had..." + (show)
Profile picture for muncie22 @muncie22

In May 2018 I had posterior cervical fusion from C3,4,5,6.
I’m upset now bc I had No symptoms before surgery. No Pain, weakness, numbness, nothing except my MRI showed normal age related stenosis, I was 61 years at that time. I trusted the orthopedic spine surgeon. Big mistake. He did a good job scaring me to do the surgery.
Jan 2021 chronic pain started. Each year it got worse, tried all the injections available with no results.
June 2024 tried Abbott spinal cord stimulator trial with no good results. Nov. 2025 tried Nevro high frequency SCS that made me feel horrible.
I’m on daily Morphine 15mg tabs 2x daily with very little help; I built up a tolerance.
Neck pain is 20 hours a day; I suffer eating in excruciating pain at dining table each meal, sitting on toilet is painful; walking is painful. By dinner time I’m so depressed. I have to pray so I’ll be able ok to floss and brush my teeth every day.
Full shower Bath is in very high Pain; I have to bathe in morning bc I can tolerate the pain and have to listen to oldies music to help Refocus my mind and to keep telling myself bathing is good exercise. Also have to constantly Distract myself by imagining my good times with family.
I have to take Valium 5mg tab to help me sleep every night.
I’m in pain as soon as I open my eyes in morning at 3:00 am.
I don’t know what to do.
I see via Chronic Pain Psychologist via Zoom every two weeks.
Thanks for listening!

Jump to this post

@muncie22
I’m in constant high pain. I take an extended release tramadol once a day and a regular release tramadol as needed. It definitely takes the edge off, but I’m never pain free. I take klonopin (I know that’s spelled wrong) to help me sleep. I’m heading to bed now. I pray that we both get some rest.

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elijahalexander | @elijahalexander | Jun 15 8:58pm

Hi,
My name is Rick. I’ve been diagnosed with CPPD after a 3 year bout with PMR. Since I had significant side effects from a couple of years on Prednisone, I am not wanting to use it for the CPPD. I tried Hydroxychloroquine but had a terrible allergic reaction. Rheumatologist is suggesting Colchicine or Methotrexate. Does anyone have experience with these drugs or an opinion about what worked for them?

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