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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.

itchyd | @itchyd | Nov 24 6:45am
In reply to @archie2 "Hi--Heisenberg is an interesting name in science--the Heisenberg Uncertainty Principle-- the subject stays in a state..." + (show)
@archie2

Hi--Heisenberg is an interesting name in science--the Heisenberg Uncertainty Principle-- the subject stays in a state of "possibility" until observed. Then the state is determined--sometimes called the "cat in the Box" experiment. Our lives are often similar--no reality until we experience relief or failure.
I just had a caudal injection that helped with overall leg pain a great deal. There are always modalities of treatment to give us hope. I have Dilaudid (Hydromorphone) in my pump. Morphine has a number of downsides as a primary pump drug, flushing, gastrointestinal distress and the formation of growths (granuloma) at the termination of the catheter the impede drug flow. I have had Dilaudid in my pump (Medtronic 40ml intrathecal) since 2007 and have been more than happy with it. Had a Flowonix Pump for 2 years but the performance and support were substandard. So happy when replaced. Also, the Medtronic pump restarts automatically after an MRI, which is a HUGE benefit, given our imaging needs.
One last serious thought. AA is a life-long sentence. I will never be out of pain again. I will never know a good night's sleep. I will never be completely comfortable at a party. I will never be able to stand online for meals or tickets. My sex life has changed. and yet, my core has not changed. My values remain in place. I love my wife and family and feel grateful for what changes they have made in their lives to accommodate my changes.
I am 80 years old next year--and yet still hopeful. I am not delusional, just focused on leveraging medical advances to improve quality of life. My pain management guy says the Boston Scientific SCS has lapped the field in performance. Heisenberg Principle right?? I'll never know until I experience the trial--open the box--as it were. I hope all of us who suffer daily from AA can take this ride together and share, learn, and grow through our community.

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Heisenberg Uncertainty Principle. Not to be confused with the Hindenburg Certainty Principle: "With what's floatin' us, I'm certain we're headed for trouble in Lakehurst."

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2 replies
archie2 | @archie2 | Nov 24 1:02pm
In reply to @itchyd "Heisenberg Uncertainty Principle. Not to be confused with the Hindenburg Certainty Principle: "With what's floatin' us,..." + (show)
@itchyd

Heisenberg Uncertainty Principle. Not to be confused with the Hindenburg Certainty Principle: "With what's floatin' us, I'm certain we're headed for trouble in Lakehurst."

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LOL— some esoteric references here— Lakehurst, “Oh, the Humanity” , for those of us of a certain age. One thing is certain from the Hindenburg— don’t try to land a hydrogen filled dirigible in a thunderstorm!
Speaking of pain, I had a caudal injection to help with Adhesive Arachnoiditis pain about 6 days ago. Has had good effect! Done with imaging and contrast.

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shalombendavid | @shalombendavid | 2 days ago

have you tried calmare/scrambler tx for your neuropathy?

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Mentor
John, Volunteer Mentor | @johnbishop | 1 day ago
In reply to @10247mylife "im mike" + (show)
@10247mylife

im mike

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Hi Mike @10247mylife, Welcome to Connect. It sounds like you might also be dealing with chronic pain. Have you found anything that helps?

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fibropositive14 | @fibropositive14 | 1 day ago

Hi I’m Debbie from England West Yorkshire..uk..
I’m 42 and have fibromyalgia/pots syndrome/psoriatic & rheumatoid arthritis…oh and I’ve just started the perimenopause too 😭 the pain affects me daily and every week guaranteed I have a flare up and I’m bedbound for 2-3 days, it’s horrendous! The chronic pain and fatigue, so debilitating. I often get depressed 😔 especially on my bad days usually when I have a flare up. It’s frustrating because in my mind, I want to get up and get things done so if I do get a good hour I’ll blitz the house but then I end up paying for it when the flare starts! Just need to learn to pace myself…
I stay hydrated and rest whenever it’s can, so important to listen to our bodies..I’m on pregablin, nefopam and codeine & also (mirtazerpine antidepressants).
I take all the vitamins b12, c & d as well as magnesium as that’s really helping! I drink electrolytes too and they give me a boost, make me feel more normal and function better…
(needed as I’ve got pots syndrome) nice to meet you all, I’m so happy I’ve found such a lovely group, who understands exactly how chronic pain affects us physically and mentally. Other people just don’t get it xx

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fibropositive14 | @fibropositive14 | 1 day ago
In reply to @jmenassaka "I’m Jessica and I have fibromyalgia with a side of IBS, Pelvic Floor Dysfunction, Depression, and..." + (show)
@jmenassaka

I’m Jessica and I have fibromyalgia with a side of IBS, Pelvic Floor Dysfunction, Depression, and a number of other issues. The years of dealing with this and being isolated have now given me severe social anxiety. This is especially hard since I used to be an outgoing people-person. Just trying to take things one day at a time.

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You’ve got this 🙌 we’re all here to help each other get through it day by day…xx

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heisenberg34 | @heisenberg34 | 11 hours ago
In reply to @itchyd "Heisenberg Uncertainty Principle. Not to be confused with the Hindenburg Certainty Principle: "With what's floatin' us,..." + (show)
@itchyd

Heisenberg Uncertainty Principle. Not to be confused with the Hindenburg Certainty Principle: "With what's floatin' us, I'm certain we're headed for trouble in Lakehurst."

Jump to this post

Love the "Hindenberg Certaintity Principle. Yes, floating along in a giant bag of hydrogen would give me serious pause. Those dirigibles were HUGE! I seem to recall that they wete 700 to 800 feet long.

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mhpd9 | @mhpd9 | 10 hours ago

Hello,
I had a back operation in January 2022, in regard to not having a disk between S1-L5. The repair was successful, but I suffered terrible collateral damage from Sciatica in both legs, Piriformis Syndrome in both buttocks, and Neuropathy in both feet. My surgeon said all this happened because pressure was taken off of the Sciatic nerve, of which had been pinched really bad. He said the tremendous pain I was in was temporary, and would ease up after a while. Wrong!! I have been in chronic pain for almost 3 years. I started out on Gabapentin, and after a while, was put on Lyrica. I take 75 mg in the morning, and 125 mg at night. My pain is so bad, that I have to take a narcotic (Ambien) just to be able to get some sleep. Currently, my major pain is in my right buttock, and goes down the back of my right thigh. Also, the Neuropathy in my feet is really bad. So, I know we are all different, but I would really appreciate some help. Thanks, in advance.

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claudialima | @claudialima | 7 hours ago

Hi everyone, I am Claudia and I live with chronic pain since around I was 11 years old. Now I am turning 50, and it is really causing limitations to my life. Thanks for having me.

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