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.

My 21 year old granddaughter was just hired by a pharmaceutical company to do research I will ask her to put this on her list right after she cures cancer.
Thinking your granddaughter has a few years to go before she gets in the lab. Keep encouraging her to dream her dream.

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Hi, I'm Carissa, Health Unit Coordinator at Saint Mary's campus.
I have been diagnosed with Fibromyalgia. Pain is mainly in my neck, lower back and calves. I have fallen so many times from my tonic-clonic seizures and not being treated for 4 years, my body feels stiff and always in pain. My neck is stiff all the time. Taking nortriptyline atm for the pain and anxiety.
I love to paint and draw, mainly landscapes, flowers and some animals. I love Funko Pop figurines and crystals. I also make my own lotion and jewelry.

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My name is Monica and I was diagnosed with Fibromyalgia in 2007, have had C5-6, C3-4, and January 2023 had C5-7 fusion with 3-4 hardware removal.

Have also had L4-5, L3-4, and then 4-5 revision. My right ankle is fused to my leg bone (which required revision 14 months after original surgery). My gallbladder and most of my female parts are gone (1999 and 2009).

I have been on every pain medication over the past 20 years for Fibro maintenance and surgery recovery.

I welcome the opportunity to get to know people and information here. I will help others as I can.

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@77montecarlo

My name is Monica and I was diagnosed with Fibromyalgia in 2007, have had C5-6, C3-4, and January 2023 had C5-7 fusion with 3-4 hardware removal.

Have also had L4-5, L3-4, and then 4-5 revision. My right ankle is fused to my leg bone (which required revision 14 months after original surgery). My gallbladder and most of my female parts are gone (1999 and 2009).

I have been on every pain medication over the past 20 years for Fibro maintenance and surgery recovery.

I welcome the opportunity to get to know people and information here. I will help others as I can.

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Sorry for the suffering you're enduring. I've had two spinal decompression surgeries - a drop in the bucket.

I have CIDP, with burning pain in my feet and ankles and have tried more medications than I can remember. You and @kathleenega have more than your share.

Amitriptyline helped my facial pain, and it seems to have cleared up. In 2017 I had a spinal cord stimulator implant for the neuropathy, and it was wonderful!! 80% relief! For the first year. From there it slowly lost its effectiveness and after 4 years, it was and continues to be hard to tell if it's helping at all. But I leave it turned on for whatever relief it does give.

Kathleen, have you had a sleep study? I had one years ago and when I got my CPAP machine I averaged 12+ hours of sleep per day the first month. I was very much sleep deprived. I've always used a full face mask, over my nose and mouth, because I've been a mouth breather all my life - that is until I had a deviated septum corrected. All of a sudden I could breathe through my nose. What a difference! But I still breathe through my mouth at night, so a nasal cushion is useless. I'm usually claustrophobic, and thought there was no way I'd be able to tolerate the mask, but I surprised myself. I guess my need for sleep trumped claustrophobia.

It seems that I've heard that spinal cord stimulators sometimes treats fibromyalgia. Maybe I'm remembering incorrectly. Lyrica was the first medication that actually helped my pain, but I ended up in the hospital with a reaction to it. Bummer.

My siblings have had multiple back surgeries and except for the decompressions, I seem to have dodged the family bullet. The decompressions were a direct result of a fall that caused compression fractures in the same areas.

So many medical conditions need research breakthroughs. And the day may come when it's our turn.

Jim

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@thebeeman

I'm Jim, 75 yrs. I was a beekeeper for 37 years and did a lot of lifting. I hurt my lower back 3 times. The 4th time was 10 years ago and it's never stopped hurting. I have had a laminectomy, stem cells, 15 epidurals, many doctors with no answers or relief. MRI and Xray show a perfect spine, hips etc. Chiropractors, massage therapists, accupucture, help temporarily. The only real help has been 4 years of physical therapy and 35 mg of Percocet/day. I have self diagnosed this as Central Sensitization (CSS). It's 24/7 pain/exhaustion. I just don't know where to turn anymore. The narcotic comes with it's own issues, but has allowed me to have something of a life. CSS seems to be the only logical explanation????

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God Bless. I am on 900mg of Gabapentin for pain ad neuropathy from lower back spinal stenosis. I also take Mobic only when I want to go somewhere special.

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Hi I’m Karl, I’m new to all of this so trying to take it in and not become overwhelmed. Too much fear in my life.

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@bobbilee

Hi
Iam sorry you are going through this . Does the lyrica help your pain? I take CBD, gabapentin and extra strength Tylenol. Flexeril makes me feel drugged, 1/2 a pill does nothing.
Take care

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PLEASE!!!!!!!!!
Change your diet. Stop eating dairy and gluten. Try one at a time but you will notice the difference. I also went as organic as I can afford. Processed food also.
I was given everything for migraines but I either had side effects or they didn't work. The women I work with told me to stop eating gluten and the migraines went away.

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@jimhd

Sorry for the suffering you're enduring. I've had two spinal decompression surgeries - a drop in the bucket.

I have CIDP, with burning pain in my feet and ankles and have tried more medications than I can remember. You and @kathleenega have more than your share.

Amitriptyline helped my facial pain, and it seems to have cleared up. In 2017 I had a spinal cord stimulator implant for the neuropathy, and it was wonderful!! 80% relief! For the first year. From there it slowly lost its effectiveness and after 4 years, it was and continues to be hard to tell if it's helping at all. But I leave it turned on for whatever relief it does give.

Kathleen, have you had a sleep study? I had one years ago and when I got my CPAP machine I averaged 12+ hours of sleep per day the first month. I was very much sleep deprived. I've always used a full face mask, over my nose and mouth, because I've been a mouth breather all my life - that is until I had a deviated septum corrected. All of a sudden I could breathe through my nose. What a difference! But I still breathe through my mouth at night, so a nasal cushion is useless. I'm usually claustrophobic, and thought there was no way I'd be able to tolerate the mask, but I surprised myself. I guess my need for sleep trumped claustrophobia.

It seems that I've heard that spinal cord stimulators sometimes treats fibromyalgia. Maybe I'm remembering incorrectly. Lyrica was the first medication that actually helped my pain, but I ended up in the hospital with a reaction to it. Bummer.

My siblings have had multiple back surgeries and except for the decompressions, I seem to have dodged the family bullet. The decompressions were a direct result of a fall that caused compression fractures in the same areas.

So many medical conditions need research breakthroughs. And the day may come when it's our turn.

Jim

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Find functional medicine in your area. They were the first one to check my hormones and adrenal glands. Your adrenal glands help regulate the chemicals in your brain. No gluten, no dairy, no processed food and as organic as you can.
My primary doctor would rather put me on antidepressants then replace my hormones. He literally said checking my Functional medicine actually wanted my medical history and asked questions for 45 minutes before they had labs drawn. You need to find out what is broken before you have fixed it. Would a mechanic try to fix your car before he took a look at the engine??

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Hello,
Sandra here. I was diagnosed with fibromyalgia in 2021 following a weird virus ( not COVID). My lumbar spine is fused from arthritis which seems to aggravate the surrounding muscles. One thing my PT performed recently was dry-needle of the lumbar spine, and it significantly reduced pain!!
I take 900 mg. Gabapentin and 60 mg Cymbalta. It all helps.
The virus also left me with burning mouth syndrome. I also avoid gluten.
I’ve learned acceptance and speaking truth and absolutely the need for discussions with my doctors and PT.
Thank you for sharing your experiences and ideas!

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@kathleenega

Hello! I'm 58, diagnosed with fibro with a significant fatigue component in 2022, after a year suffering with no answers. Just having the diagnosis was a relief and helped improve my mood. I am currently on Cymbalta, Lyrica, low dose naltrexone, amitryptiline, and thyroid meds. I tolerate all well and my pain was well controlled until recently. I have adjusted my thyroid meds, added some CBD and take flexeril at night but I'm still achy. I think at the root of my issues is lack of high quality sleep. Nothing I take or do takes me to restorative sleep. I am still working and need to do so for the next few years, and that weighs heavy on my mind. Glad to be here and hope you all are having a good day today.

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Have you tried a good soaking bath before bedtime? If you have a jacuzzi style bathtub, that's even better. I know what you mean about knowing what the problem is. Some people swear by Tumeric that you get at the health store. Do you think you have any food allergies? All the Best.

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