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.

@faithwalker007

Hello, my name is Renee B (Faithwalker007). I live in Wyoming and was diagnosed with Complex Regional Pain Syndrome Type 2 (Causalgia) last year. I developed CRPS due to my right knee replacement in May of 2017 when somehow, the surgeons permanently damaged my lumbosacral plexus. It took nine doctors, and a long time before someone finally figured why I hurt so bad in my back and right leg and foot, AND couldn't lift my foot (drop foot in my right foot) besides simply telling me, "it's in your head," or "give it some time, it will go away."
Even now, after insertion of a DRG Spinal Stimulator that takes care of only 10-15% of the pain, if that, and having to take a crapload daily dose of narcotics, my life is only a shell of what it used to be. I can't drive, stand, sit (for any length of time), cook, clean, hunt, fish, camp . . . well, you get the point. In fact, I will be migrating to a mobility scooter soon and adjusting the training of my Service Dog-to-be to include wheelchair duties.
This would not be as bad to cope with as it seems if my husband was not already officially disabled with Traumatic Chronic Pain Syndrome. He's had a total of 38 surgeries with most of his adult procedures on soft tissue and joint repair. He needs at least three or four more and is suffering intense pain while he struggles to provide care for me, his wife who was once the breadwinner of our home.

We are Christians and continue to fight on with the strength of the Lord within us and around us. I won't sugarcoat our lives though. It's hard. Very hard. Each day, week, sometimes, each minute is difficult, but we will keep fighting. Why? Because we will not give up and let the pain win the war. Many others in the state, country… world suffer worse than we possibly can do each day. Many will die before we will lay our heads on our pillows tonight. The least we can do is honor them by not surrendering before our time is due.

Do I have questions? Yes. Will I answer some if I can? Absolutely. It's nice to meet you and all walking, crawling, rolling, lying along this path. It's good to know I'm (we're) not alone. 🙂

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@faithwalker007 Hi Renee, I appreciate you writing, I have fibromyalgia and I know how hard it is, even with our faith. I love what you said about honoring the ones before us. I’ve never thought of it that way and there have been times I wanted to throw it all away. I cannot stand and walk gingerly with a walker. Tomorrow I go to a new pain doctor and I’m praying for help. Nice to meet you….Karen

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@karen00

@faithwalker007 Hi Renee, I appreciate you writing, I have fibromyalgia and I know how hard it is, even with our faith. I love what you said about honoring the ones before us. I’ve never thought of it that way and there have been times I wanted to throw it all away. I cannot stand and walk gingerly with a walker. Tomorrow I go to a new pain doctor and I’m praying for help. Nice to meet you….Karen

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Thank you so much for welcoming me into the forum. I've never been good at this kind of thing. I will say that it is easier for me to talk about this stuff than my husband. Maybe it's because he has never been officially diagnosed with anything, in particular, that is causing his excruciating pain every day other than his repetitive surgeries. No one will even give him a reason why he is always needing surgeries over and over again. I don't blame him for being frustrated and angry at the medical world. I never gave up until I got an answer. It wasn't one I liked…CRPS Type 2 isn't something anyone wants to hear. Who wants to hear they have the most painful condition on the planet? Right?
But James (my husband) has been suffering for eight years and no doctor (and their has been many) has a clue why. He has neuropathy in his feet (no diabetes), carpal tunnel in both hands, shoulders that pop in and out of place, hip and back pain, severe leg pain…the list goes on and on. My heart breaks for him just as his breaks for me.
Our life is the nightmare that nobody wants.
We don't fight it alone, but believe me, I wish he had answers for at least a part of his struggle to survive.

Switching to a new pain doctor is a scary experience and I will be praying for you, Karen. I want to do it as well. Right now, we have to travel 2 and 1/2 hours one way to mine every month and the provider I see has no clue about CRPS. She sees me for 10 minutes and asks ME what I want to do. She tried to give me oral Ketamine last month because it "worked with a diabetic neuropathy patient." She said she'd heard Ketamine was helpful with CRPS but to do my own research and let her know if I wanted to try it. I called my neurologist and he didn't recommend oral at the dose she wanted to prescribe. He said that for my condition and pain level only IV infusion in a clinical setting over a period of two weeks would be effective due to my migraine history and epilepsy.

Please keep me posted how it goes with your appointment! I'm praying. Thanks for the contact.
Renee

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@faithwalker007

Thank you so much for welcoming me into the forum. I've never been good at this kind of thing. I will say that it is easier for me to talk about this stuff than my husband. Maybe it's because he has never been officially diagnosed with anything, in particular, that is causing his excruciating pain every day other than his repetitive surgeries. No one will even give him a reason why he is always needing surgeries over and over again. I don't blame him for being frustrated and angry at the medical world. I never gave up until I got an answer. It wasn't one I liked…CRPS Type 2 isn't something anyone wants to hear. Who wants to hear they have the most painful condition on the planet? Right?
But James (my husband) has been suffering for eight years and no doctor (and their has been many) has a clue why. He has neuropathy in his feet (no diabetes), carpal tunnel in both hands, shoulders that pop in and out of place, hip and back pain, severe leg pain…the list goes on and on. My heart breaks for him just as his breaks for me.
Our life is the nightmare that nobody wants.
We don't fight it alone, but believe me, I wish he had answers for at least a part of his struggle to survive.

Switching to a new pain doctor is a scary experience and I will be praying for you, Karen. I want to do it as well. Right now, we have to travel 2 and 1/2 hours one way to mine every month and the provider I see has no clue about CRPS. She sees me for 10 minutes and asks ME what I want to do. She tried to give me oral Ketamine last month because it "worked with a diabetic neuropathy patient." She said she'd heard Ketamine was helpful with CRPS but to do my own research and let her know if I wanted to try it. I called my neurologist and he didn't recommend oral at the dose she wanted to prescribe. He said that for my condition and pain level only IV infusion in a clinical setting over a period of two weeks would be effective due to my migraine history and epilepsy.

Please keep me posted how it goes with your appointment! I'm praying. Thanks for the contact.
Renee

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@faithwalker007 , I commend you for being cautious, and for discerning the difference between good doctoring and what sounds like inept or tentative doctoring. I understand how frustrating and discouraging it is to be unable to get a prognosis or even a diagnosis. I feel the same way, and one of my sisters spent close to ten years and saw a string of specialists, hearing one diagnosis after another, only to find out that none of them were correct. I pray that God will lead you to the right person who will put together James's problems and symptoms and have the Spirit's wisdom.

Blessings,

Jim

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@faithwalker007

Thank you so much for welcoming me into the forum. I've never been good at this kind of thing. I will say that it is easier for me to talk about this stuff than my husband. Maybe it's because he has never been officially diagnosed with anything, in particular, that is causing his excruciating pain every day other than his repetitive surgeries. No one will even give him a reason why he is always needing surgeries over and over again. I don't blame him for being frustrated and angry at the medical world. I never gave up until I got an answer. It wasn't one I liked…CRPS Type 2 isn't something anyone wants to hear. Who wants to hear they have the most painful condition on the planet? Right?
But James (my husband) has been suffering for eight years and no doctor (and their has been many) has a clue why. He has neuropathy in his feet (no diabetes), carpal tunnel in both hands, shoulders that pop in and out of place, hip and back pain, severe leg pain…the list goes on and on. My heart breaks for him just as his breaks for me.
Our life is the nightmare that nobody wants.
We don't fight it alone, but believe me, I wish he had answers for at least a part of his struggle to survive.

Switching to a new pain doctor is a scary experience and I will be praying for you, Karen. I want to do it as well. Right now, we have to travel 2 and 1/2 hours one way to mine every month and the provider I see has no clue about CRPS. She sees me for 10 minutes and asks ME what I want to do. She tried to give me oral Ketamine last month because it "worked with a diabetic neuropathy patient." She said she'd heard Ketamine was helpful with CRPS but to do my own research and let her know if I wanted to try it. I called my neurologist and he didn't recommend oral at the dose she wanted to prescribe. He said that for my condition and pain level only IV infusion in a clinical setting over a period of two weeks would be effective due to my migraine history and epilepsy.

Please keep me posted how it goes with your appointment! I'm praying. Thanks for the contact.
Renee

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@faithwalker007 When you say that his shoulders are popping in and out of place, it sounds like it is an issue of overly tight muscles and fascia in the chest and neck. A lot of doctors are not familiar with treating this with myofascial release which is a gentle stretching with physical therapy. It may be something to look into and try to see if it helps. There can be layers of tight tissue preventing normal movement and causing nerves to be compressed resulting in pain. I do MFR for thoracic outlet syndrome and it has relieved my pain. Low back pain can be caused by overly tight hips, hip flexors and the psoas muscle that attaches to the spine and pulls on it. MFR can help a lot of physical issues. It may be able to help carpal tunnel, and sometimes thoracic outlet syndrome (which I have) is misdiagnosesd as carpal tunnel because the symptoms overlap. My TOS was missed, and I also did have carpal tunnel. I also wanted to add that surgeries cause scar tissue in the fascia and make it tighter. The fascia is a web extending through the entire body and if you already have tightness, adding surgical scar tissue will make it worse. You may want to look for an expert level MFR therapist to help. You can search at this link. https://myofascialrelease.com/find-a-therapist/

Here is our discussion where you can find information and links and some info on TOS.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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Hello All, this is my attempt at introduction: I joined 2 days ago. I’ve posted numerous posts already but I wonder if it is essential to find my own posts or if anyone has replied without “ checking my email “ although this is not a subject or group here I’ve been in world wide HELL since returning from another level of HELL where I was hospitalized for SBO and several other never before experienced health issues which I’d love to talk about here. But here is where I’m struggling to figure out how to “ find myself “ metaphorically speaking as well as struggling to understand how buttons work here on connects

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@stuckonu

Hello All, this is my attempt at introduction: I joined 2 days ago. I’ve posted numerous posts already but I wonder if it is essential to find my own posts or if anyone has replied without “ checking my email “ although this is not a subject or group here I’ve been in world wide HELL since returning from another level of HELL where I was hospitalized for SBO and several other never before experienced health issues which I’d love to talk about here. But here is where I’m struggling to figure out how to “ find myself “ metaphorically speaking as well as struggling to understand how buttons work here on connects

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@stuckonu

I've had resections on both my large and small intestine, and surgery to address adhesions. I've been in the hospital a couple of times because of obstructions. Every time I have stomach pain I take notice. I take Lactulose, increasing the dosage when I miss a BM. I agree with you that the pain from sbo is terrible. How long have you been dealing with sbo? Had surgery? Welcome to Connect.

Jim

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@stuckonu

Hello All, this is my attempt at introduction: I joined 2 days ago. I’ve posted numerous posts already but I wonder if it is essential to find my own posts or if anyone has replied without “ checking my email “ although this is not a subject or group here I’ve been in world wide HELL since returning from another level of HELL where I was hospitalized for SBO and several other never before experienced health issues which I’d love to talk about here. But here is where I’m struggling to figure out how to “ find myself “ metaphorically speaking as well as struggling to understand how buttons work here on connects

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Welcome @stuckonu.
You can learn more about How to Get Started on Connect here: https://connect.mayoclinic.org/get-started-on-connect/
Further tips can be found on the About Connect page https://connect.mayoclinic.org/page/about-connect/ See the filter "Tips and How to Use" to get advanced tips.

To see all your notifications without checking your emails, you can see all on-site notifications https://connect.mayoclinic.org/notifications/
The images attached show you where you can find on-site notifications a) on mobile phone and b) on desktop, laptop or tablet.

Notifications on phone

Notifications desktop

Liked by stuckonu

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@colleenyoung

Welcome @stuckonu.
You can learn more about How to Get Started on Connect here: https://connect.mayoclinic.org/get-started-on-connect/
Further tips can be found on the About Connect page https://connect.mayoclinic.org/page/about-connect/ See the filter "Tips and How to Use" to get advanced tips.

To see all your notifications without checking your emails, you can see all on-site notifications https://connect.mayoclinic.org/notifications/
The images attached show you where you can find on-site notifications a) on mobile phone and b) on desktop, laptop or tablet.

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Thanks Colleen, Very Helpful!

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@jimhd

@stuckonu

I've had resections on both my large and small intestine, and surgery to address adhesions. I've been in the hospital a couple of times because of obstructions. Every time I have stomach pain I take notice. I take Lactulose, increasing the dosage when I miss a BM. I agree with you that the pain from sbo is terrible. How long have you been dealing with sbo? Had surgery? Welcome to Connect.

Jim

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Hi Jim, it took me awhile to find your reply. Colleen has gone above and beyond to educate me so I can find and access my posts and reply if need be.
After a life filled with feedback informing we that I’m not understood, it’s the same here. It does not upset me; in fact it challenges me to consider all comments and ask questions if it is me who doesn’t understand something.
To reply to your questions:
No surgery for SBO but based on most of what I’ve read in the SBO discussion group me thinks it’s my appendectomy that may be related to my first event which was in Feb of this year. I think that answer answered 2 of you questions.
Is this the correct group to continue this discussion or might one of the moderators move it to the SBO group?
Colleen told me in her email that suggestions to improve “ connects” are always welcome. So here’s a thought: place a hyperlink in posts that have relevance elsewhere. Specifically an icon or symbol ( ¥ ) for instance that appears as one character but in fact has the whole address concealed in the symbol. “PAIN” is applicable as one site with SBO info as does the SBO group. Unless I’m not yet aware that SBO is not a stand alone group. I think I need to enter via the “ Digestive “ group but it’s not an absolute knowledge yet I’m sure I will learn.
I see, recognize, and know that most of my contributions are longer that most other members. A part of me wants to apologize, another part of me wants to explain or defend the size of my contributions, and if there are any teachers here I’m open to an email with the RED PENCIL CORRECTION papers that I got often.
So if anyone has a burning desire the RED X my entries, I can take it

Thank Jim, maybe we can learn things from each other
Ciao for now or ( Niao )

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@stuckonu

Hi Jim, it took me awhile to find your reply. Colleen has gone above and beyond to educate me so I can find and access my posts and reply if need be.
After a life filled with feedback informing we that I’m not understood, it’s the same here. It does not upset me; in fact it challenges me to consider all comments and ask questions if it is me who doesn’t understand something.
To reply to your questions:
No surgery for SBO but based on most of what I’ve read in the SBO discussion group me thinks it’s my appendectomy that may be related to my first event which was in Feb of this year. I think that answer answered 2 of you questions.
Is this the correct group to continue this discussion or might one of the moderators move it to the SBO group?
Colleen told me in her email that suggestions to improve “ connects” are always welcome. So here’s a thought: place a hyperlink in posts that have relevance elsewhere. Specifically an icon or symbol ( ¥ ) for instance that appears as one character but in fact has the whole address concealed in the symbol. “PAIN” is applicable as one site with SBO info as does the SBO group. Unless I’m not yet aware that SBO is not a stand alone group. I think I need to enter via the “ Digestive “ group but it’s not an absolute knowledge yet I’m sure I will learn.
I see, recognize, and know that most of my contributions are longer that most other members. A part of me wants to apologize, another part of me wants to explain or defend the size of my contributions, and if there are any teachers here I’m open to an email with the RED PENCIL CORRECTION papers that I got often.
So if anyone has a burning desire the RED X my entries, I can take it

Thank Jim, maybe we can learn things from each other
Ciao for now or ( Niao )

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@stuckonu I'm still learning how to navigate online groups. And I tend to get going in a message and before long I've written more than most people would want to read.

Have you found a discussion about sbo in one of the Connect departments? I've not looked for one. If you don't find one you can always start a discussion. I started a discussion about suicidal thoughts, so if I can, you should have no problem doing it.

Jim

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@jimhd What is sbo? Also, would you please provide the link to the thread about suicidal thoughts? Many thanks!

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@babette

@jimhd What is sbo? Also, would you please provide the link to the thread about suicidal thoughts? Many thanks!

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@babette
@stuckonu is the one who introduced the abbreviation for small bowel obstruction. I'll try to find the link to the discussion I started. It would probably be be in the depression group.

Jim

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@babette

@jimhd What is sbo? Also, would you please provide the link to the thread about suicidal thoughts? Many thanks!

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@babette The discussion is in the mental health topic. It's called I survived suicide attempts.

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@babette

@jimhd What is sbo? Also, would you please provide the link to the thread about suicidal thoughts? Many thanks!

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Babette, “SBO” is Small Bowel Obstruction. I think you need to go to the “ Digestive “ group and scroll down until you find it. I wondered about posting a new post without hitting reply and having the posters name in the post as should happen here with my name and your name in the heading

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What happened with Virginia bill HR 4063 to stop opioids at VA hospitals except for cancer & short term ? Peggy

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