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

Hi @rivermaya34. I'm sorry to read you are in a bad flare. You mentioned having a doctors appointment a couple weeks back. If memory serves, you may have been visiting your neurologist and possibly discussing CSS and/or pain rehab. How did that go for you?

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Hey there @rwinney! Yes, you are correct - good memory! So... my first appt (neurology) was very early on a Saturday morning and, after not sleeping and meds still kicking in, I completely forgot and didn't realize until I laid back down for a nap and woke up. The second appt was supposed to have been the other day, but my primary dr had a family emergency so I wasn't able to meet with him. I could probably send a message to my neurologist and ask, but I always feel it's better to talk things out in person. I have an appt on 3/23...haven't decided yet if I'll wait or ask beforehand. Thanks for checking in tho!

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@rivermaya34

Hey there @rwinney! Yes, you are correct - good memory! So... my first appt (neurology) was very early on a Saturday morning and, after not sleeping and meds still kicking in, I completely forgot and didn't realize until I laid back down for a nap and woke up. The second appt was supposed to have been the other day, but my primary dr had a family emergency so I wasn't able to meet with him. I could probably send a message to my neurologist and ask, but I always feel it's better to talk things out in person. I have an appt on 3/23...haven't decided yet if I'll wait or ask beforehand. Thanks for checking in tho!

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@rivermaya34 Hey, thanks for the update. I agree, talking it out in person sometimes is much better. I was checking in to see if you made any progress on management of your symptoms, and how you're managing your schedule? I know you're a busy lady, which is an awesome distraction, but I was wondering if you're still able to be actively involved in all that you mentioned you take part in? Have your symptoms or flares slowed you down much? If so, how are you handling that?

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@rwinney

@rivermaya34 Hey, thanks for the update. I agree, talking it out in person sometimes is much better. I was checking in to see if you made any progress on management of your symptoms, and how you're managing your schedule? I know you're a busy lady, which is an awesome distraction, but I was wondering if you're still able to be actively involved in all that you mentioned you take part in? Have your symptoms or flares slowed you down much? If so, how are you handling that?

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@rwinney So, on that note, I have actually had to do a reevaluation of the "big picture" schedule of my life. A friend of mine has encouraged me to be mindful of my plate - what I can add on, take off or rearrange entirely. And, it's been a godsend to me because for once in my life I finally feel like I am allowed to "step back" or "focus on me" if I need...a foreign concept in my world. Right now, with a new semester starting at a new school, staying on top of my assignments is the biggest priority I have. Thankfully, it gives me leeway to say, "I can't today" either to others or myself. Unfortunately, tho, flares keep me awake most nights and do put a hard stop to any physical activities, but on the upside they do slow me down at work, which is where the limitations are needed most. It's been really humbling I'll say, because for one it's allowed me to be able to ask for help and just "be real" with others, while also providing encouragement to them. Sometimes those days when all I really want to do is go for a run, I have to settle and be thankful I have the opportunity to "trade" desired activities e.g. playing my organ instead of a brisk walk. Continuing to seek joy in all things, little or big, is KEY for me and it keeps me going! 🙂

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@lathak

I meant s*** hit the fan!

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LOL. Yes, I knew what you meant. I was just interested in hearing what all the s*** was and how you handled it. I was hoping it might help some of us or maybe some of us could help you if it happens to you again. But if it's too personal, then I understand if you don't want to share. Just hope you are feeling better and if we can help you in any way, please share with us. We are all here to help and to get help.

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@retirement75

It makes me want to scream and cry when reading stories of people being in chronic pain. I have degenerative disc disease and so far have had 3 spine surgeries, 1 laminectomy, lumbar fusion L4-S1, and cervical fusion C4-5. I've been dealing with cervical radiculopathy for about 15 months while experiencing a heart attack and triple bypass. Nerve pain is the worst. There needs to be a delineation between opioid abusers and people who need pain medication to manage their symptoms and life. It's simply maddening. I imagine if the people mandating the laws, government, had any of this disease, there would be plenty of opioids available. People have to be accountable for themselves and I don't think the blame goes entirely to doctors.
In 2007, when I had my last surgery, I had the medication I needed. Today, if you ask for hydrocodone, there seems to be a stigma surrounding your request. Things need to change. I can get a script for 30 pills, but if you're having a bad flare up, that amount wouldn't do much. I usually take, tylenol and ibuprofen and supplement with some hydrocodone if needed.

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You are experiencing the same thing I just went through. I fractured another vertebrae and was in excrutiating pain. I asked my spine doctor if she could give me something stronger until the fracture healed and she said no. I asked her if I could take the pain medication I was on every 4 hours instead of every 6 hours and she said no because I would run out of the pain medication. So all she would do was prescribe Lyrica and a ton of X-Rays and a MRI. Even after finding out what was causing the horrible pain she still didn't try to help with the pain. I sent her a note in the health portal we use and asked her for an explanation of why she wouldn't help with some kind of treatment to ease the pain and she wouldn't even respond to the message. I think it may be time that I look for a new back specialist. But more importantly, I think its time the government hear our complaints. I just don't know who to contact about it. If anyone out there knows who I can contact at the government level about the the laws and regulations please let me know.

But I can tell you that I do have luck with a product called StopPain. It's a roll on and I've used it for my shoulder that has a torn rotator cuff. It does a great job on that pain. I've only found it at Walgreens. You also might ask your doctor about writing a script for those pain patches. Good luck to you. I hope you get some relief real soon. God bless you.

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Hi, I’m a new member. Have suffered from lower back and sciatica pain for over 10 years. Have tried physical therapy, epidural injections, Surgery (laminectomy), acupuncture and BCD, and most recently more PT with class 4 laser treatments. None of these has helped. Afraid I have to live with pain for the rest of my life.

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@seattle579

Hi, I’m a new member. Have suffered from lower back and sciatica pain for over 10 years. Have tried physical therapy, epidural injections, Surgery (laminectomy), acupuncture and BCD, and most recently more PT with class 4 laser treatments. None of these has helped. Afraid I have to live with pain for the rest of my life.

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@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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@rivermaya34

@rwinney So, on that note, I have actually had to do a reevaluation of the "big picture" schedule of my life. A friend of mine has encouraged me to be mindful of my plate - what I can add on, take off or rearrange entirely. And, it's been a godsend to me because for once in my life I finally feel like I am allowed to "step back" or "focus on me" if I need...a foreign concept in my world. Right now, with a new semester starting at a new school, staying on top of my assignments is the biggest priority I have. Thankfully, it gives me leeway to say, "I can't today" either to others or myself. Unfortunately, tho, flares keep me awake most nights and do put a hard stop to any physical activities, but on the upside they do slow me down at work, which is where the limitations are needed most. It's been really humbling I'll say, because for one it's allowed me to be able to ask for help and just "be real" with others, while also providing encouragement to them. Sometimes those days when all I really want to do is go for a run, I have to settle and be thankful I have the opportunity to "trade" desired activities e.g. playing my organ instead of a brisk walk. Continuing to seek joy in all things, little or big, is KEY for me and it keeps me going! 🙂

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@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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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

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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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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