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 husband has Chondrocalcinosis. We have been to Mayo. He takes Kineret and it is helping- daily injections. Very expensive as they go off of your income. We farm. Some good years- some bad years. Along with the aging process I am his wife of 40 years and his cheerleader! We will continue to proceed with this med. just sad that I’m sure some cannot even afford treatment.

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@avamarie123

I am 66 years old and have been dealing with systemic chronic pain and fatigue for decades. It takes so much time and energy to try to manage them and the people around me can’t understand my struggles. I look forward to being a part of a group of like minded (and bodied), people! Thank you for providing this platform for sharing.

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Hi Ava, yes this is very difficult. I am sorry for you. I have had a daily persistent headache for 5 years/4 months every day/all day accompanied by dizziness. Neurologists cannot figure it out and I am really weary. I cannot do anything. Have to lay down for 1/2 hour so I can get up for 1/2 hour. Welcome to this group. We support each other.

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I just started taking Baclofen, 10 mg. every 8 hours. This has been added to my lengthy list of pain meds(Tramadol, 2 50 mg tabs 3xper day; Gabapentin, 600 mg 3 X per day; Diclofenac K, 50 mg 2x perday. This is along with Atorvostatin, Pantopramozole, Tamulosin HCl, and Vitamin D, and multivitamin.

Since I started the Baclofen, my pain level has decreased slightly, but I feel a little foggy and dizzy. I remember a few years ago when I started this whole pain journey, I was put on Trmadol, Diclofenac K, and Diazepam.
Those three made me quite dizzy , but it went away after a few days, and my pain level decreased significantly(7-2). Since my pain returned about 9 months ago, I started back on the Tramadol and Diclofenac K. They barely touch my pain(daily level of about 8). It seems like my body is ever so slowly giving up and dying. I just wonder if the dizziness/fogginess will decrease over time. I've only been taking it for about four days. What think ye, oh Mayo Clinic connect commenters?

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My doc wants to correct my big hammer toe with screws and shaving bone off with long rehab. Or amputate big toe at middle joint. This will cut rehab time in half. But my Major concern and fear is residual pain or any pain for extended time. I'm 85 yr old male with type 2 diabetes. My A1c is 4.3 for last 6 months. I've got other issues but still driving and walking with most of my brain function ie; fully functional on PC, I pad, iPhone, etc.
Anyone with advise or experience with residual actual pain?

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Hey all!!
My name is Cheryl and one of my many conditions happens to be Chronic Pain!! I live in a small town in NC. Hubby and I are almost empty nesters.

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Hello, I honestly can’t remember if I already introduced myself or not. Ain’t brain fog fun? Lol
I’m Misty and I have multiple chronic pain conditions. I have hEDS, CRPS, trigeminal neuralgia, cranio-cervical instability, fibromyalgia, sacroiliitis, cervical spinal stenosis, DDD, and osteoarthritis.
I have a spinal cord stimulator for my CRPS pain because I am intolerant to literally ALL the meds they typically use to treat it because of my MCAS (mast cell activation syndrome).
Other than that I only have muscle relaxers, prescription lidocaine patches when I can afford them and otc meds to help with the test of my pain. Well, and acupuncture and a pain psychologist that I meet with twice a month and physical therapy to try and strengthen my muscles around my joints so they can maybe stop dislocating so often and the muscles not tear from trying to hold them in because they’re currently too weak to do so since my tendons and ligaments are basically the consistency of taffy and hold nothing in.
My EDS doctor and I are discussing trying LDN at the moment so crossing fingers that works.
Nice to meet you all!

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@heisenberg34

So, have you gotten any pain relief from your pain pump? 've had one for a year and a half with no relief. I've had it's output increased more times than I can remember. I stopped having it increased when it started giving me bad side effects. Now, I am having it dialed back, with the intent of having it removed. I had the first trial with morphine. No relef. The second trial was with hydromorphone. Pain dropped from an 8 to a 2. I was certain that I was going to have this amazing relief...but no go. Pain is daily at a 7-8, except when I try to do ANY exercising. Then, it ramps up to 8-9.
I tried to get a trial of a different, updated SCS, but the scar tissue would not allow the paddle leads to be placed in the sweet spot. Whar drug iin your pain pump currently. Hope you have success with your SCS trial. Keep us updated.

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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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@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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@archie2 Sounds like even though the pain pump has given you a little relief, not enough to really improve your quality of life? Can't imagine how you would be feeling without it.
I chose Heisenberg for the exact reason you stated. Life is, to a degree, very uncertain. Unless you have faith in the author of Life.
At one time anyone aged eighty would have been an "elderly geezer". Now, at age 77, not so much. How did we reach this point in our lives? Ha,ha! I just had a trial of the WaveWriter SCS by Boston Scientific. Did not go well due to scar tissue from previous scar tissue. I have asked my neurosurgeon to make my case to the insurance company for the permanent implant. Not likely to be approved, but if you don't ask...
Hope you can get the trial and some relief.

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I'm Rebecca and I have been suffering from chronic pain for a long time due to several different conditions. My dog and my 5 year old grand daughter help keep me going.

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My granddaughter and my dog keep me going also

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