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.

@susanlorrie

Hello everyone, I have thoracic outlet syndrome on the left side of my upper body. This occurs when the rib and collar bone meet and block the flow of blood from either the veins or arteries and the related nerves to various parts of the arm, hand,scapula and every thing else you can think of. Unfortunately it affected all three in my body. I had a corrective thoracic surgery but the nerves were apparently permanently damaged. I was told the surgery would completely alleviate the pain. It did not. I also had a c5-c6 fusion of my cervical spine. I have done everything under the sun to alleviate the pain. After all the surgeries were completed I was left with only mild relief of the pain and am now stuck taking a large amount of pain meds.
Pain has effected me in many ways. I lost my job, I can’t work, I can’t drive and I sleep a lot. Having been such and active person, I never planned on living such existence. I am working on decreasing the amount of medication I take and my pain doctors have told me when the nerves have been in pain a long time, it can take a while for the nerves to settle once the medication is taken away.

I promise I won’t be this long winded in the future, but I did want to give a little back ground on my current situation. I look forward to being part of this group mostly to listen, but occasionally to contribute. It is difficult to type at times. And that time is now. Thanx for letting me ramble. Lorrie

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Welcome to the group. I’m sorry you are going through this. I’ve been quiet here lately. Trying to do different things to keep my mind off of pain. What helps you? @susanlorrie

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Hello! My name is Clubohara, I live in Minnesota and I have Fibromyalgia- a chronic pain illness with no cure. I liken this illness to a “Painful” episode of Star Trek. The “Mirror Mirror” episode Star Trek, Original Series; episode”Mirror/Mirror” : Due to serious Ion storms the crew of the U.S.S.Enterprise are transported into a mirror timeline.

The “Mirror” timeline is an opposite world, dark, harsh and vile. Violence and disobedience run rampant. An instrument has been created, and is used “at-will”, to curb violence and lead people away from unworthy tendencies.

The instrument is called the “Agonizer”, a hand-held devise that, when placed anywhere on the body, stimulates its victims nerve endings. It delivers excruciating pain while leave no physical damage.

The “Agonizer”: Its powerful pain IS Fibromyalgia. The chronic, widespread pain of fibromyalgia roams freely around the body, as if the holder of the “Agonizer” is using it like the child’s magnetic toy, “Wooly Willy”. Pulling shavings of pain into different, silly, painful positions.

But, as “FibroWarrior” I fight, with all my might, the pain of the “Agonizer”- I shall prevail!

Peace!

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Hi everyone, my name is Jenn. I have been suffering chronic back and hip pain for a couple of years now and was recently diagnosed with fibromyalgia. I finally found a great pain Dr. Luckily, I am slowly finding some relief, but not as much as I want. It’s a process though, right? Some days I’m at my wit’s end and thought it best to find a community forum for support, motivation, and possible solutions etc.

I look forward to being a part of this community and interacting with everyone.

Thanks for reading,
~Jenn

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Welcome, Jenn! I am sorry that you are struggling with back and hip pain…I am too! I have rheumatoid arthritis and have developed problems in these areas as well. I have tried everything from acupuncture and herbs to chiropractic work and spinal injections!

THE best thing that I have discovered has been Rolfing, also known as Structural Body Integration. It is a form of massage therapy with a focus on acupressure points. My practitioner has extensive training and she is amazing. I HIGHLY recommend an internet search for a practitioner in your area. My MRI results actually show a difference after my series of ten treatments!

I also recommend Prolotherapy injections. Again, an internet search will find a local provider. These injections are made up of sugar water that is put into the muscles…this stimulation reduces the pain.

My Mayo doctors have “approved” of both of these techniques yet they are not offered at the Mayo Clinic. I still have pain but these are two approaches that have helped me considerably!

Best wishes!

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I just had An RF Neurotomy on my lower lumbar at 5 levels and in the SI joint for my right side. It’s been two weeks and it seems to be working well. Tomorrow I get the left side done… doc says it should give me 4-12 months of pain relief… at least for that part of my body! The Fibro is another story entirely. I have also posted in the Fibro section…

I will definitely research your suggestions, so I can have a game plan after this procedure wears off. I have arthritis of the back, tears in theee discs, degenerative disc disease, and SI joint disfunction, and torn labrum in my right hip. I have been through a series of cortisone shots for all the issues… I’ve had six different medical opinions over the past 5 months and I’m not bad enough for surgery. I can’t imagine what my pain levels must be in order for surgery to be an option! I’m miserable, but still hopeful, especially now that the RF Neurotomy seems to be working. I’ll know more in two weeks when I heal from tomorrow’s procedure.

Thanks for the welcome and the info! I sure hope you continue to find relief.

Jenn

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Hi, I’m Susan, username @sistergoldenhair. I’m new to this group & glad it came my way. I’ve already posted something re Myofascial Pain, & looking forward to reading about all of your experiences.

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Hello to all. Good to be at this site. I have been diagnosed with CRPS. It’s been a nightmare from finding a Pain Doctor to the the Disabity Carrier. Does anyone have a CRPS experience and good advice to share with me . Thank
You.

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Welcome to the group! What does CRPS stand for? Chronic Regional Pain Syndrome?

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Complex Regional Pain Sydrome, formerly RSD.

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Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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Thank you for your reply.
I suffer pain level 9 most of the day and have yet to find effective Pain relief mostly because there are no real reliable diagnostic test for CRPS.
Do u go to a Pain Center near Philadelphia ?

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@clubohara

Hello! My name is Clubohara, I live in Minnesota and I have Fibromyalgia- a chronic pain illness with no cure. I liken this illness to a “Painful” episode of Star Trek. The “Mirror Mirror” episode Star Trek, Original Series; episode”Mirror/Mirror” : Due to serious Ion storms the crew of the U.S.S.Enterprise are transported into a mirror timeline.

The “Mirror” timeline is an opposite world, dark, harsh and vile. Violence and disobedience run rampant. An instrument has been created, and is used “at-will”, to curb violence and lead people away from unworthy tendencies.

The instrument is called the “Agonizer”, a hand-held devise that, when placed anywhere on the body, stimulates its victims nerve endings. It delivers excruciating pain while leave no physical damage.

The “Agonizer”: Its powerful pain IS Fibromyalgia. The chronic, widespread pain of fibromyalgia roams freely around the body, as if the holder of the “Agonizer” is using it like the child’s magnetic toy, “Wooly Willy”. Pulling shavings of pain into different, silly, painful positions.

But, as “FibroWarrior” I fight, with all my might, the pain of the “Agonizer”- I shall prevail!

Peace!

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Awesome analogy! I tried to use a similar analogy with my neurologist and got treated like I was nuts. My Dad died of Bobar ALS and I was just beginning my new path in life with Peripheral Neuropathy as well as RA, etc, etc. Anyway, appreciate your positive attitude as it is what it is . . .take care. My sister has Fibromyalgia and Chronic Fatique and keeps smiling too.

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Hi i am Willis Fraley Jr. 61year old male . I am a Physical Therapist and have Reflex Symphthetic Dystrophy.

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@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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If you have any type of metal or metallic frag nesr your spine the MRI will pull it out causing burning pain

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@ptawillis

Hi i am Willis Fraley Jr. 61year old male . I am a Physical Therapist and have Reflex Symphthetic Dystrophy.

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How did you get a doctor to believe your symptoms. The Pain Clinic at the Hospital at the University of Pennsylvania in Philadelphia thinks I am crazy. They don’t believe me when I describe my symptoms so now I have to seek out another Pain Center. This disorder is a nightmare!

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