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.

Judy, @jujubbb I can certainly understand now your interest in finding others who are dealing with condition. It would be great to have some people who could relate to this and share their experiences with you. Perhaps someone will come forward and post. In the meantime, here is some info on an online support group for people with this type of disorder, https://www.dailystrength.org/group/syringomyelia

Teresa

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@jujubbb

Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Hi Judy (@jujubbb), I also would like to welcome you to Mayo Connect. I had to look it up to learn what the rare condition is. I found this page on Mayo Clinic’s website and it looks like you are already doing some of the recommended self management actions:
http://www.mayoclinic.org/diseases-conditions/syringomyelia/manage/ptc-20267786
I’m hoping some other chronic pain Connect members with spinal cord health conditions join the discussion and offer what works for them. I did a search on Google Scholar (https://scholar.google.com/) on the term “syringomyelia treatment” and it may provide some links that offer some helpful information:
https://scholar.google.com/scholar?as_ylo=2017&q=syringomyelia+treatment&hl=en&as_sdt=1,24&as_vis=1
John

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@jujubbb

Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Judy (@jujubbb), I would like to invite Jim (@jimhd) into the discussion as I think he uses several treatment methods to manage his chronic pain. Jim do you have any suggestions that might benefit Judy?

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Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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I am Marilyn from the state of Washington and was diagnosed with fibromyalgia 12 years ago. To add to the fun, a antibiotic resistant infection left me with post-surgical pain. Other than that, aging has been a bucket of giggles.

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@marilyn624

I am Marilyn from the state of Washington and was diagnosed with fibromyalgia 12 years ago. To add to the fun, a antibiotic resistant infection left me with post-surgical pain. Other than that, aging has been a bucket of giggles.

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My drs thought I had fibromyalgia and myofascial pain for over 40 years before I finally had an MRI —now I know chronic pain from the cyst in my spinal cord. Turning 70 has not been my best year!!

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@pagray24

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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Maybe an MRI would show real cause of pain.?

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@jujubbb

Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Welcome, Judy @jujubbb . Diagnosis and finding treatment that works can be a long, and sometimes frustrating process. I have overlapping medical issues that make the process even more challenging. I hope you find the help, as well as the answers you need soon.

Jim

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@jujubbb

Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Hi, Judy @jujubbb

John mentioned that I have a few resources for my pain management. I have idiopathic peripheral neuropathy, and have tried every medication available for neuropathy pain, including some that are off label. The only two that have helped are Lyrica and Morphine sulfate contin. I took the Lyrica for a week and I had severe reactions to it, enough to put me in the hospital for a few days. I was really disappointed because it was helping relieve the burning pain. I finally started taking Morphine sulfate contin, and it takes the edge off. The one thing that actually gave significant pain relief (80%) is the spinal cord stimulator implant, in June of this year. I have good and bad days, often connected to activity level. Standing on a hard surface for very long, or walking any distance on hard surfaces will remind me of how far I’ve come.

I fell from a falling ladder 8 years ago and broke my lower back, so I have pain from that if I do much heavy work. For that, I take, if anything, Percocet and a muscle relaxer, Orphenadrine.

Because of bleeding ulcers 7 years ago, NSAIDS are off the table, but I do take some when my hands hurt too much from arthritis.

So, those are the things I use to keep me going. I didn’t mention the meds I take for depression and other mental health issues. The combination of chronic pain and depression is a common one, but can be difficult to deal with.

As I said in another note, I hope you find resolution soon.

Jim

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@pagray24

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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Between the point of your shoulder and your nipple? Check your spleen with an echo. Anything more than 5%over expected is too much. If so, call Angela Dispenzieri or Martha Grogan at Mayo-MN

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@jujubbb

Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Thank you. Getting treatment had been a challenging process—and finding a medication to help pain.

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@pagray24

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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Welcome, Patricia @pagray24

No definitive diagnosis is certainly discouraging. What kind of tests have been done? Have you seen specialists? I know others will offer ideas and roads to pursue. Keep us posted.

Jim

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@pagray24

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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Hello Patricia, @pagray24 and welcome to Mayo Connect. As I looked at Judy’s suggestion regarding an MRI, I was wondering have you had an MRI? If not, what other diagnostic tests have been done? We look forward to hearing from you again.

Teresa

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@marilyn624

I am Marilyn from the state of Washington and was diagnosed with fibromyalgia 12 years ago. To add to the fun, a antibiotic resistant infection left me with post-surgical pain. Other than that, aging has been a bucket of giggles.

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Hi, Marilyn @marilyn624. Seeing a pain specialist was the best decision I made in my search for relief from peripheral neuropathy pain. Are there medications you can take that have helped?

Jim

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@pagray24

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

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Hi Jim and Teresa,
OK, get ready it is a long list. I will spine=cts, mris, thoracic epidural, post ganglion nerve block.
Chest=x-ray, CT, Mri, us, CT angio, intetcostal injections, antibiotics.
Abdomen=hida, kub, small bowel follow thru, multiple CT, Mri, us, egd,colonoscopy, gastric emptying, camera pill, multiple barium and nuclear studies.
Pelvic=CT, Mri, us, transvag us,doppler.
Specialists: multiple Gastro, surgeons, pain management, cardiology, neurology, nephrology rheumatology, endocrinology, pulmonary, infectious disease, ortho, gyn, and primary care! You
Have I missed any?

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