Chronic Pain members - Welcome, please introduce yourself

Hello. I am a 71 year old woman who has dealt with fibromyalgia for most of my adult life. Fortunately, I have a physician who acknowledges and validates the pain. He has worked with me through the last 10 years to find the right level of medications without having me take more than I should. He has guided me toward appropriate exercise, yoga, massage, cognitive changes, and relaxation. In October, he wants me to take a class about dealing with chronic pain ( which the Mayo system is teaching).

Fibro is not my only challenge. I have had a headache since September of 2014. Botox has helped a little, but it never totally goes away. I have Sjogren’s and Raynaud’s syndromes and take Plaquenil for a high CL level. Last fall I began to lose my sense of taste. Now my tongue stings around the edges. I have GERD. My balance has gradually deteriorated. Neuropathy in my feet has certainly not helped that problem.

In spite of it all, I feel pretty lucky because I’m maintaining some quality of life. Lots of days are not so good, but then some good ones come along, and they really give me hope.

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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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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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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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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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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.
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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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