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.

Hi everyone! I am 47 years old. I have chronic pain that started in my early 20s. Growing up I was always involved in sports, mainly gymnastics until middle school then soccer, basketball, and
cross-county. After years of episodic flare ups, I exhausted all “conventional” therapies. I couldn’t tolerate my work as a RN and decided to have my first fusion. I think it’s worth noting that both my Physiatrist and Spinal Surgeon saw significant changes on my MRIs in my cervical region- however, at that time, it wasn’t causing pain.
So, in 2013 at 38 years old, I had an Anterior Lumbar Interbody Fusion (ALIF) for L4-L5 and L5-S1. For 5 years, it was wonderful with minimal pain.
Then in 2015, I began experiencing neck pain, stiffness, severe headaches, and radiculopathy into my arms. In 2016, after again trying conventional and alternative therapies to no avail, I had a Cervical fusion from C5-C6 by the same surgeon.

In between these years I’ve also experienced the following:
(No family medical history- adopted)
Hip fracture (non-mechanical)
Finger fracture (required surgery)
Fractured toes
Other fracture finger
Cracked molars (2)
Severe Rib pain- been to ED x 2- Once was told “Pluerisy” and then told “costocondritis”
1 37-week gestation
1 34.5-week gestation
TMJ - left side of jaw
Cold hands/feet
Veins “blow” if I hit my hand on a table for example
Livedo Reticularis

Recent Findings/ new symptoms
Postural Tachycardia - recently noticed (130s while standing)
Osteopenia on DEXA scan
Radiculopathy- hip/ legs, groin, abdomen!!!
Left rib pain
hypermobility of spine- crepitus

I don’t even know what type of doctor I need to see at this point. Any help or guidance is so appreciated!!

REPLY
Profile picture for dphillips221 @dphillips221

Hi everyone! I am 47 years old. I have chronic pain that started in my early 20s. Growing up I was always involved in sports, mainly gymnastics until middle school then soccer, basketball, and
cross-county. After years of episodic flare ups, I exhausted all “conventional” therapies. I couldn’t tolerate my work as a RN and decided to have my first fusion. I think it’s worth noting that both my Physiatrist and Spinal Surgeon saw significant changes on my MRIs in my cervical region- however, at that time, it wasn’t causing pain.
So, in 2013 at 38 years old, I had an Anterior Lumbar Interbody Fusion (ALIF) for L4-L5 and L5-S1. For 5 years, it was wonderful with minimal pain.
Then in 2015, I began experiencing neck pain, stiffness, severe headaches, and radiculopathy into my arms. In 2016, after again trying conventional and alternative therapies to no avail, I had a Cervical fusion from C5-C6 by the same surgeon.

In between these years I’ve also experienced the following:
(No family medical history- adopted)
Hip fracture (non-mechanical)
Finger fracture (required surgery)
Fractured toes
Other fracture finger
Cracked molars (2)
Severe Rib pain- been to ED x 2- Once was told “Pluerisy” and then told “costocondritis”
1 37-week gestation
1 34.5-week gestation
TMJ - left side of jaw
Cold hands/feet
Veins “blow” if I hit my hand on a table for example
Livedo Reticularis

Recent Findings/ new symptoms
Postural Tachycardia - recently noticed (130s while standing)
Osteopenia on DEXA scan
Radiculopathy- hip/ legs, groin, abdomen!!!
Left rib pain
hypermobility of spine- crepitus

I don’t even know what type of doctor I need to see at this point. Any help or guidance is so appreciated!!

Jump to this post

Hello @dphillips221, Welcome to Connect. You certainly have been through a lot. I can't begin to imagine trying to figure out what is causing it and what might help. There is a discussion started by @jenniferhunter that you might find helpful - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of Myofascial Release Therapy?

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Hello @dphillips221, Welcome to Connect. You certainly have been through a lot. I can't begin to imagine trying to figure out what is causing it and what might help. There is a discussion started by @jenniferhunter that you might find helpful - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of Myofascial Release Therapy?

Jump to this post

No. Thank you for sharing the links…I’ll check them out!

REPLY

First timer here, Teresa CES, Cauda Equina syndrome. I have no support system, my DR's an idiot! He won't even read the literature. I just feel so alone

REPLY
Profile picture for tesseo10 @tesseo10

First timer here, Teresa CES, Cauda Equina syndrome. I have no support system, my DR's an idiot! He won't even read the literature. I just feel so alone

Jump to this post

Welcome. You won’t feel so alone here. While I don’t know much about your issues, I do know that if you don’t feel supported by your Dr it’s time to switch if at all possible.

REPLY
Profile picture for tesseo10 @tesseo10

First timer here, Teresa CES, Cauda Equina syndrome. I have no support system, my DR's an idiot! He won't even read the literature. I just feel so alone

Jump to this post

Welcome @tesseo10, I don't have CES but I can tell you that you are not alone and I'm happy you found Connect where you can meet other members and learn from each other about your health conditions and what has helped. You may also be interested in the following discussions:

-- Cauda Equina Syndrome: Pain, symptoms, management & prognosis: https://connect.mayoclinic.org/discussion/cauda-equina/
-- Cauda equina syndrome (CES): https://connect.mayoclinic.org/discussion/my-story-in-short/

You mentioned your doctor won't read the literature. Is this something you read that might help? Do you have any questions you are trying to get answered?

REPLY
Profile picture for dphillips221 @dphillips221

Hi everyone! I am 47 years old. I have chronic pain that started in my early 20s. Growing up I was always involved in sports, mainly gymnastics until middle school then soccer, basketball, and
cross-county. After years of episodic flare ups, I exhausted all “conventional” therapies. I couldn’t tolerate my work as a RN and decided to have my first fusion. I think it’s worth noting that both my Physiatrist and Spinal Surgeon saw significant changes on my MRIs in my cervical region- however, at that time, it wasn’t causing pain.
So, in 2013 at 38 years old, I had an Anterior Lumbar Interbody Fusion (ALIF) for L4-L5 and L5-S1. For 5 years, it was wonderful with minimal pain.
Then in 2015, I began experiencing neck pain, stiffness, severe headaches, and radiculopathy into my arms. In 2016, after again trying conventional and alternative therapies to no avail, I had a Cervical fusion from C5-C6 by the same surgeon.

In between these years I’ve also experienced the following:
(No family medical history- adopted)
Hip fracture (non-mechanical)
Finger fracture (required surgery)
Fractured toes
Other fracture finger
Cracked molars (2)
Severe Rib pain- been to ED x 2- Once was told “Pluerisy” and then told “costocondritis”
1 37-week gestation
1 34.5-week gestation
TMJ - left side of jaw
Cold hands/feet
Veins “blow” if I hit my hand on a table for example
Livedo Reticularis

Recent Findings/ new symptoms
Postural Tachycardia - recently noticed (130s while standing)
Osteopenia on DEXA scan
Radiculopathy- hip/ legs, groin, abdomen!!!
Left rib pain
hypermobility of spine- crepitus

I don’t even know what type of doctor I need to see at this point. Any help or guidance is so appreciated!!

Jump to this post

I am currently 53 and also had spinal surgery at L4-L5. L5-S1(bi-lateral laminotomy at age 50) to relieve chronic pain from stenosis. I remain a side- or stomach-sleeper as sleeping on my back, pillows or not, still causes severe pain.

Approx. 3 weeks ago, I started experiencing almost identical symptoms you described —what felt like severe tension headaches at the base of my skull, along with neck pain, and stiffness, although the pain shooting down into my right arm has been going on for about 18 months, with both conventional & alternative therapies no longer working as well.

The thought of cervical surgery and potential limited mobility scares my to death, but the increasing severity and frequency of the headaches and neck pain is becoming unbearable. Did your doctor(s) or surgeon ever provide you with a specific diagnosis or alternative options to your cervical fusion?

REPLY
Profile picture for dphillips221 @dphillips221

Hi everyone! I am 47 years old. I have chronic pain that started in my early 20s. Growing up I was always involved in sports, mainly gymnastics until middle school then soccer, basketball, and
cross-county. After years of episodic flare ups, I exhausted all “conventional” therapies. I couldn’t tolerate my work as a RN and decided to have my first fusion. I think it’s worth noting that both my Physiatrist and Spinal Surgeon saw significant changes on my MRIs in my cervical region- however, at that time, it wasn’t causing pain.
So, in 2013 at 38 years old, I had an Anterior Lumbar Interbody Fusion (ALIF) for L4-L5 and L5-S1. For 5 years, it was wonderful with minimal pain.
Then in 2015, I began experiencing neck pain, stiffness, severe headaches, and radiculopathy into my arms. In 2016, after again trying conventional and alternative therapies to no avail, I had a Cervical fusion from C5-C6 by the same surgeon.

In between these years I’ve also experienced the following:
(No family medical history- adopted)
Hip fracture (non-mechanical)
Finger fracture (required surgery)
Fractured toes
Other fracture finger
Cracked molars (2)
Severe Rib pain- been to ED x 2- Once was told “Pluerisy” and then told “costocondritis”
1 37-week gestation
1 34.5-week gestation
TMJ - left side of jaw
Cold hands/feet
Veins “blow” if I hit my hand on a table for example
Livedo Reticularis

Recent Findings/ new symptoms
Postural Tachycardia - recently noticed (130s while standing)
Osteopenia on DEXA scan
Radiculopathy- hip/ legs, groin, abdomen!!!
Left rib pain
hypermobility of spine- crepitus

I don’t even know what type of doctor I need to see at this point. Any help or guidance is so appreciated!!

Jump to this post

Have you been tested for Lymes?

REPLY

I am in pain 24/7. Somedays worse than others. Have tried Injections and Ablations with minimal success. No pain pills, just a bunch of creams, muscle relaxers, and Cymbalta. Any one tried BIO-WAVE versus TENS? Looking for some relief anyway I can get it. Life Quality, if you suffer with debilitating pain, I'm sure you know what I mean.

REPLY
Profile picture for betterway @betterway

I am in pain 24/7. Somedays worse than others. Have tried Injections and Ablations with minimal success. No pain pills, just a bunch of creams, muscle relaxers, and Cymbalta. Any one tried BIO-WAVE versus TENS? Looking for some relief anyway I can get it. Life Quality, if you suffer with debilitating pain, I'm sure you know what I mean.

Jump to this post

@betterway, This is from 2006 but may provide some information you might find helpful.

Non-Invasive Targeted Electronic Pain Control Device ("Biowave System") Versus Transcutaneous Electrical Nerve Stimulation (TENS) for the Symptomatic Treatment of Chronic Low Back Pain: https://www.clinicaltrials.gov/ct2/show/NCT00277797

REPLY
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