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.

@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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How much MS contin did your wife take to reach a level where it helped with her pain? I was up to 90mg, and that wasn’t enough to soothe the pain. That was as high as my pcp would go because of the limits set up by the hospital system he’s under, and then only with the recommendation of the pain specialist.

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@edieguinn

Hi. So happy to find this group. I have severe scoliosis, spinal stenosis and nerve damage in my legs. I’ve tried all methods of relief. Injections. Epidural. Not a candidate for implanted spinal cord stimulator. Spine is too curved. Looking for input from others. Don’t want to do pain meds if possible. I’m 64

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What meds do you take and how do you function independenly on them?

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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You said you ordered it. Do you get a prescription for it?, or just order online from C W Botanicals?

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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@sistergoldenhair, no prescription is necessary. You order it online. If it says it is out of stock, call customer service and order it by phone. It has been selling so fast that for a while they switched to phone ordering only (for the cream, not the oil you put under your tongue.)

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@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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Hi Warren, I’m Renee. I also had dry eyes like yours for approximately 15 years. I heard that some of my medications could be causing this, but passed it off as allergies and getting older. I’m 66. I was on amitriptyline as one of my pain meds.. to help me sleep. I started to develop heart arrhythmia right after taking it, so I stopped. What I discovered was my eyes were not as dry! So if you are on any medications, check the side effects. Maybe they can replace with another drug.
I still use Refresh PM eye gel at night. I swear by it! I also continue to use Refresh artificial tears for day. I found the REFRESH brand works best for me. In the winter I also use a humidifier by my bed.
Sorry to hear of your eye issues. I know how bad it can get, but what I have and still use has helped tremendously! Good luck!

Liked by virtuous69

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Hi @jimhd It varied over time, but at one it time it was 120 x3. That said she had a spiral fracture in her spine for two years + before a doctor took a unique angled image and discovered it. The damage by that time was extensive. I understand that every patient is unique, but my wife was on some level of opioids for at least 30 years.

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@cousinsteph

Hello everyone. I am a 50 year old email with several chronic pain issues. RSD in foot/leg , Degenerative disc disease in my back, and trigeminal neuralgia in my face. I have had RSD since 1998. I am on Disability (after quite a struggle). I thought I would check in here and check out the topics and make some new friends hopefully.

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Hello Cousinsteph and welcome to Connect. You have found a great place to meet new friends that are going through things similar to yourself. You mentioned RSD, degenerative disc disease, and trigeminal neuralgia as some of your ailments. You may find these threads of interest as they may contain information relevant to your struggles and help you meet some members who are experiencing things similar to yourself:

– RSD/CRPS http://mayocl.in/2dk3ucb
– After knee replacement, I developed RSD http://mayocl.in/2cX10nN
– Retired RDT with degenerative disc disease http://mayocl.in/2dS58Hj
– Trigeminal neuralgia http://mayocl.in/2bVAIAl

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Hi Kathy! Your symptoms and medical history sound similar to mine. I’m a little bit older than you–I was in my mid-20s in 1969 and now I’m 71. I have had 4 spinal surgeries (2 cervical, 2 lumbar), and I too have neuropathy in my right foot and lower leg–have had it for 3 years. It gets worse when I sit for a long period of time, or when I’m on my feet for any length of time–talk about being between a rock & a hard place. I’ve tried gabapentin, but after taking it for 6 weeks it hasn’t done any good. so I’m in the process of weaning myself off from that. Some people do find it helpful, though. My most recent lumbar surgery was 2 years ago, and for a while the burning sensation in my leg got better but never fully disappeared. It’s gotten worse in the last year or so. I saw the surgeon’s PA in June. He diagnosed me with “post-laminectomy syndrome.” I looked that up on the internet and saw that another term for it is “failed back surgery syndrome.” I’m going to look into injections, although they didn’t help back in 2014. If that doesn’t work I will try to get a thorough exam at either Mayo in Scottsdale or the Barrow Neurological Institute in Phoenix (I live in west Texas). Beyond that, I’m not sure what I will do. Sorry I haven’t been able to give you much advice here, but I wanted to assure you that you are not alone! If I find some relief I’ll definitely let you know. Wishing you the best, Cheryl

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have severe chemo induced peripheral neuropathy. looking for someone who has done Calmare scrambler therapy at Mayo or anywhere else. not interested in resposes about drugs or natural remedys-do not work for me,

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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I also have scoliosis and it is not that I feel pain but sitting and sometimes standing can cause discomfort. As an adult I tried going to a chiropractor who happened to be someone I new from classes we were taking. He only took what my insurance took. So what the heck I went twice a week. My point is that it did help relieve some of my neck and back pain. I do not know how it will affect you but I am just bringing it out to you for a thought

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@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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Welcome Fran I hope this conversation group will help in any way we can. As for your language here let it out. The more you are yourself the more this group can try to meet your needs. Welcome again

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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I tried a chiropractor years ago but he discharged me after months. He couldn’t help with my issue. I appreciated his honesty.

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Sorry about that how about acupuncture. I am just shooting some ideas hoping something will help

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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I’ll make it easier. Lol. Acupuncture, nerve blocks, spinal, PT. Not a candidate for spinal cord stimulator. My pain doctor has tried and recommended all he can. That’s why we resorted to percoset but I haven’t taken one yet. Pool walking, stretching classes and massage therapy

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@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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Hello Fran, I’m pretty certain no one hear cares about your language they only care about you and how you feel. I will keep you in my thoughts (and prayers if that does not offed you). Please take care of yourself and let us know how you are doing.Lorrie

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