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.

@rwinney

@rivermaya34 I hear you saying so many good things like mindful, big picture, focus on me, etc... I'm impressed! You certainly are saying the right things and are on the right track. A full plate can be destructive when dealing with chronic symptoms, as you were finding out. It is a real blow when reality sets in that life must change and be recreated in order to find the best quality of life for oneself. Saying it is one thing, but doing is another and it takes time. Please give yourself grace along the way and remember... Self-Care Is Not Selfish.

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@rwinney This weekend was devastating for me, pain and sleep-wise. No sleep + worst pain ever = bad combination. Thankfully, tho, it was the first time in years I was able to just take a few minutes and cry. And, on top of that, I was able to reach out to a friend (my former figure skating coach, an Olympian at that) who really came alongside me to support, encourage and advocate for me. She even affirmed that it's ok "to slow down" and is probably necessary now. It's really humbling, but hard, to allow others who have always viewed you as "strong" to watch you hit rock bottom then come down and sit with you in the pit before offering a hand out. It's a deeper level of love than I'll ever be able to understand this side of Heaven! Yesterday was the first time I was able to voice to her and another friend that I just needed someone to sit with me while I cry...an enormous step for a hard-headed, independent, strong-willed girl like myself lol. But, your reminders above are absolutely golden and needed... that "it's not selfish" and to "extend grace" personally. As I've decreased my pace in life (with some things, not everything), it's blessed me by presenting opportunities to gaze at beautiful scenery more, increase my gratitude for life itself and basic functions, and ultimately encourage others in their hard times. Thank you for being such a bright spot among this community! 🙂

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@rivermaya34

Greetings @kireraw ! After reading your post, looks like our situations are 95% similar. I'm SO sorry you are dealing with all this 🙁 Does anything bring you relief at all? I would attest to your last statement - it is exceedingly tiring fighting pain just to be able to function. There is a practical pain management program that @rwinney suggested to me - which I am currently in the process of seeking a referral for - she may be able to give you some more info if you're interested...she said it was "life-altering."

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praying for you!!!

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@rexsan20

praying for you!!!

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@rexsan20 Thank you so much, that is very kind!! Prayers are always accepted! 🙂

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@rivermaya34

@rwinney This weekend was devastating for me, pain and sleep-wise. No sleep + worst pain ever = bad combination. Thankfully, tho, it was the first time in years I was able to just take a few minutes and cry. And, on top of that, I was able to reach out to a friend (my former figure skating coach, an Olympian at that) who really came alongside me to support, encourage and advocate for me. She even affirmed that it's ok "to slow down" and is probably necessary now. It's really humbling, but hard, to allow others who have always viewed you as "strong" to watch you hit rock bottom then come down and sit with you in the pit before offering a hand out. It's a deeper level of love than I'll ever be able to understand this side of Heaven! Yesterday was the first time I was able to voice to her and another friend that I just needed someone to sit with me while I cry...an enormous step for a hard-headed, independent, strong-willed girl like myself lol. But, your reminders above are absolutely golden and needed... that "it's not selfish" and to "extend grace" personally. As I've decreased my pace in life (with some things, not everything), it's blessed me by presenting opportunities to gaze at beautiful scenery more, increase my gratitude for life itself and basic functions, and ultimately encourage others in their hard times. Thank you for being such a bright spot among this community! 🙂

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You're welcome.
I was you, and understand more than you realize.

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@kireraw

Greetings my friends. I am 54 and
am retired/disabled due to multiple injuries from a car accident in 2017. I had a laminectomy, discectomy and fusion of L4/L5, radio frequency ablations a C5/C6/C7 and 2 surgeries on my right hand—All of these to address injuries and pain after the car accident. I’ve done years of chiropractic, massage, acupuncture but have suffered from neuropathic pain from the beginning—right after the accident. Last year I was diagnosed with Small Nerve Fiber Polyneuropathy(SNFPN)—caused by the injuries or subsequent surgeries from the car accident. I’m on a daily course of pain, anti-depressant and anti-seizure medications and many vitamin and other supplements—all to address my pain issues. I have chronic lumbar and sacral pain, chronic cervical/thoracic pain, the SNFPN causes Allodynia which presents as whole body skin hypersensitivity, making it nearly impossible to wear clothing—I also have constant crushing pain in all of my bones, constant tinnitus in both of my ears, as well as digestion, bladder and bowel issues—all caused by the SNFPN—for which there is no cure and no treatment—Only pain management. I spend all day everyday fighting with pain that never goes away and it’s physically, mentally and emotionally draining.

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@kireraw Hey there. I read your post and took a deep, long breath. Mainly because I feel you. I feel your pain, frustration, sadness, anger and desperation. I'm grateful you have found Connect for community support and to seek knowledge.

The first thing I'd like to convey to you is that there is hope. I first came to Connect in search of hope. Yes, at the time I was scared, unaccepting and was on a mission. It was really just me, myself, and I, considering doctors had nothing more for me but drugs, procedures and zero path forward. My journey was a confusing one. Here's my neuropathy story a couple years back. My apologies, I had a lot to get out at the time:

https://connect.mayoclinic.org/comment/310343/

Fast forward to now. I put some pieces together and concluded that I had Central Sensitization Syndrome (CSS) which is this big chronic pain and symptom umbrella that lined up perfectly with what I was experiencing. Yes, all my other plethora of diagnoses were valid but some were actually crap shoots for lack of knowing how else to label me.

Long story short, I found a video from Mayo Clinic's Dr. Sletten about CSS and Mayo's Pain Rehabilitation Center (PRC). I'll tell you what, it answered my prayers. You mention at the end of your post your pain never goes away and is physically, mentally and emotionally draining. You mention taking an assortment of pain medications and supplements.

The 4 components of PRC that you learn, work on and are all in on for the rest of your life are:
Physical
Emotional
Behavioral
Chemical

I can not speak highly enough about the pain rehab program and my positive experience.

Might you be interested in taking a different approach by developing a path forward to help yourself live a better quality of life? Chronic pain may never completely leave but there are tools and a plan to help calm the fire. Are you interested in watching a video on Central Sensitization, and learn about the pain rehab program?

I'm here to help in any way I'm able. Keep your chin up.

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@ kireraw
I’m sorry to read of your injuries. But what got my attention was that you were taking anti-convulsant and anti-depresent meds. Just wanted to mention that you may want to get your vitamin D level checked since it is an essential vitamin. My level was nearly non-existent when first tested.
Many seizure and anti-depressant meds metabolize the vitamin D faster than normal lowering your vit D serum level.
enzyme inducing meds are especially bad but even non-inducers can interfere with with vit D metabolism like Neurontin/Gabapentin. May I ask which seizure medication you’re taking and are you taking them to prevent seizures from a possible head injury or to help manage pain/Neuropathy.
Take care,
Jake

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@rwinney

@seattle579 Hello there, welcome. Thanks for joining the conversation about chronic pain. You my friend, are not alone. 10 years is a long time of having chronic back pain. It sounds like you may be coming to acceptance, which is such an important factor in moving forward to find your best quality of life. Finding a plan and path forward as to how you are going to find the best quality of life, given your circumstances, is another big step.

Do you mind sharing a little about your daily routine and what self-help tools you presently use?

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I am 84. I do some exercises prescribed by my PT, and usually walk for about 20 minutes each day. Figure I better keep moving for as long as I can. What bothers me most is oftentimes I cannot sit without some degree of pain on my right side in the hip and bottom area. Cushions help some, but not much.

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@seattle579

I am 84. I do some exercises prescribed by my PT, and usually walk for about 20 minutes each day. Figure I better keep moving for as long as I can. What bothers me most is oftentimes I cannot sit without some degree of pain on my right side in the hip and bottom area. Cushions help some, but not much.

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@seattle579 Walking up to 20 minutes each day is excellent. Good for you!

Does breaking up the time you sit with movement help ease your right side hip and bottom pain? For instance get up and walk to another room during TV commercials, or set a timer as a reminder its time to get up and stretch. Has PT provided a gentle daily stretch routine for your full body?

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@rwinney

@seattle579 Walking up to 20 minutes each day is excellent. Good for you!

Does breaking up the time you sit with movement help ease your right side hip and bottom pain? For instance get up and walk to another room during TV commercials, or set a timer as a reminder its time to get up and stretch. Has PT provided a gentle daily stretch routine for your full body?

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Good suggestion. I admit I tend to sit too long, especially when working on the computer or when involved with doing something at my desk.

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