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.

@skippyr

This is my first post. I’ve had rectal pain non stop for seven years. It started after having a BCIR surgery. That is an internal bag for waste made out of small intestine so it can be emptied using a catheter. My rectum was removed forty years ago due to ulcerative colitis. I had illiosmy for two years then a Koch Pouch which is similar to the BCIR. It lasted for many years until 2000 with the valve failed and started leaking. The rectal pain is unrelenting and feels like a hot jagged post twisting and poking into my backside. I’ve tried everything from a hysterectomy to a spinal laminectomy to every kind of injections you can think of. I’ve recently received a DRG Stimulator that goes under the tailbone. It is the first thing to give any marked relief but the pain is still such that my life is very restricted. Has anyone ever heard of a intrathecal pump for pain in this area?

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@skiippyr…Sure sounds like you have suffered terrible indignities with your condition. Hugs. These darn bodies sure do betray us in some of the most awful ways. Wow, I didn't even know they did such surgeries 40 years ago, and glad they did, for your sake! Can not begin to imagine the pain and discomfort you are forced to endure. Do you have "good" days, or are things the same everyday? What do they attribute this condition to? What brought it on? If you don't mind me asking.

Liked by ttesch2000

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@skippyr

This is my first post. I’ve had rectal pain non stop for seven years. It started after having a BCIR surgery. That is an internal bag for waste made out of small intestine so it can be emptied using a catheter. My rectum was removed forty years ago due to ulcerative colitis. I had illiosmy for two years then a Koch Pouch which is similar to the BCIR. It lasted for many years until 2000 with the valve failed and started leaking. The rectal pain is unrelenting and feels like a hot jagged post twisting and poking into my backside. I’ve tried everything from a hysterectomy to a spinal laminectomy to every kind of injections you can think of. I’ve recently received a DRG Stimulator that goes under the tailbone. It is the first thing to give any marked relief but the pain is still such that my life is very restricted. Has anyone ever heard of a intrathecal pump for pain in this area?

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@skippyr….what is BCIR surgery? Never heard that before. And what is a spinal laminectomy. Thanks.

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Hi. I'm Tasha

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@colleenyoung

Welcome Allan,
You may also be interested in joining the conversation about neuropathy happening here https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/ Members sharing on this discussion thread may have clinical trial suggestions and tips about the AMA guide.

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Yes

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@salena54

Frank1, Warren, wear your goggles with your head held high and with a smile. Being diffren isnt something to be ashamed of, some people are just afraid of things they dont understand, thats why you hear the comments. Thats why its good not to judge anyone because we dont know what they are going through, are what sicknesses people are suffering from. A smile and a kind word goes a long way. Have a very blesses day!! salena54

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Well said.

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I was wondering when I recieve treatments, if I am suppose to have someone with me or no?

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@jmjlove

Oh my! So glad u still have foot! Funny, but I had two blood clots in arm. One in each artery. Like you, I almost lost the arm. Had I waited any longer I would have. So, seems we have that in common. Is your foot your source of chronic pain? If so, how do you treat your pain? Glad you've joined in discussion. Or, maybe you've been on this forum for a while..*she shrugs*. I am new and just beginning to recognize names. Thanks for the kind wish. Same to you!

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Hi jmi, my foot is okay now. A year after my clot I was diagnosed with stage 4 throat cancer. I'm cancer free now but it was a rough road to recovery. My voice and throat are still not right due to the radiation but manageable. About 2 yesrs ago I started dragging my foot and eventuall went to an orthopedic surgeon. To make a long short he preformed a c3c5 cervical fusion. It did not help and made things worse. Now I'm experiencing terrible pain in my legs, hands and foot. My legs are worse and i can barely walk. And my throat is worse since they had to go through the neck to do the fusion. Now I'm seeing a neurosurgeon. I have another issue that started 7 years ago but since this reply is so long I'll talk about it at a later time. Have a great day.

Liked by jmjlove

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@rsnowflake

Well it started 2 years ago when I broke my ankle. My orthopedic surgeon kept saying it was healing great according to the xrays, but it was still very swollen and had a purple and blue tone, and it hurt like hell if any one touched it. He happened to know another orthopedic surgeon who studied complex regional pain syndrome at Jefferson Hospital. But now worked with the Rothman clinic. My doctor actually drove me 2 the other office to show the other doctor my foot. He immediately was like it looks like you have C.R.P.S. . Symptoms are severe pain in an appendage after you've broken or sprained something. It also turns bluish and purple. The pain is unreal. They call the skin " mermaid " skin.

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Sorry I didn't finish last night I go to therapy once a week for someone who doesn't live with all my crap every day. The crps also jumped into my arm it was horrible. I was in so much pain. So to be diagnosed although I already was, for spinal implant surgery you have to see a neurologist, rheumatologist, 2 psychiatrists and a pain management specialist. So you can get the stimulator that's crazy …lol. it works a on both arms and hands. There is a generator in my but that send electromagnetic signals to my spine. Its saved my hand. But it's not curable and it jumps from different parts of your body. It might, it might not. Stress and weather play a huge part in how I feel each day!! Keep your spirtsup!

Liked by jmjlove

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@rsnowflake

Sorry I didn't finish last night I go to therapy once a week for someone who doesn't live with all my crap every day. The crps also jumped into my arm it was horrible. I was in so much pain. So to be diagnosed although I already was, for spinal implant surgery you have to see a neurologist, rheumatologist, 2 psychiatrists and a pain management specialist. So you can get the stimulator that's crazy …lol. it works a on both arms and hands. There is a generator in my but that send electromagnetic signals to my spine. Its saved my hand. But it's not curable and it jumps from different parts of your body. It might, it might not. Stress and weather play a huge part in how I feel each day!! Keep your spirtsup!

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@tjp4 and @snowflake and others,
I have not been on the Chronic Pain site in a while. I am a mentor in the Women's Health group but often visit this group because I suffer from chronic pain from scoliosis and spinal stenosis. My symptoms have been progressive burning pain in my legs and aching in my lower legs and ankles. I have avoided any surgery for this and took opioids and gabapentin with few if any side effects. Since late last year I began trying a new drug called belbuca mainly because my pain doctor is trying to minimize the opioids he prescribes. I was a skeptic since I have suffered with chronic pain down my legs and into my ankles for over 10 years and I have tried pretty much everything nonsurgical. Belbuca is both an opioid agonist and opioid antagonist as I understand it. So it does have some opioid in it but it is not as high on the drug schedule as regular hydrocodone which is what I have been taking. The belbuca comes as a tiny stick-on patch that you put inside your mouth on your cheek until it dissolves. It usually takes not more than 30 minutes. It is a 12 hour medication which if it works correctly should eliminate all the pill taking or reapplication. I began at a low dose and did not think it did much. Then I went up on dosage and within a week I had reduced my opioid pills from 6 per day to 4 per day. I no longer have the nerve/burning pain in my legs much at all but still have some of the other skeletal/muscular pain in one of my lower legs and ankles. So I increased the dosage again starting today and am going to see how I do. I have very good insurance but even if you do not, there are some coupons for belbuca that I got from my doctor (there may be some online as well).

I am just wondering if anyone else has tried belbuca and what your experience was. I also wanted to share mine just in case someone might be interested in checking it out by discussing it with your doctor. My pain is quite severe and has been for many years so finding something that helped even a little was really quite encouraging. Just wanted to share it with the group.

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@lauren123

@artscaping, Hello, I'm very interested in your post. I hope to hear more of your experience. Thank you!

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@lauren123 Good afternoon. Thanks for your interest. What in particular are you curious about? I am happy to respond. Just need a hint or two. Be happy today.

Liked by lioness

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@baxtersmom

@tjp4 and @snowflake and others,
I have not been on the Chronic Pain site in a while. I am a mentor in the Women's Health group but often visit this group because I suffer from chronic pain from scoliosis and spinal stenosis. My symptoms have been progressive burning pain in my legs and aching in my lower legs and ankles. I have avoided any surgery for this and took opioids and gabapentin with few if any side effects. Since late last year I began trying a new drug called belbuca mainly because my pain doctor is trying to minimize the opioids he prescribes. I was a skeptic since I have suffered with chronic pain down my legs and into my ankles for over 10 years and I have tried pretty much everything nonsurgical. Belbuca is both an opioid agonist and opioid antagonist as I understand it. So it does have some opioid in it but it is not as high on the drug schedule as regular hydrocodone which is what I have been taking. The belbuca comes as a tiny stick-on patch that you put inside your mouth on your cheek until it dissolves. It usually takes not more than 30 minutes. It is a 12 hour medication which if it works correctly should eliminate all the pill taking or reapplication. I began at a low dose and did not think it did much. Then I went up on dosage and within a week I had reduced my opioid pills from 6 per day to 4 per day. I no longer have the nerve/burning pain in my legs much at all but still have some of the other skeletal/muscular pain in one of my lower legs and ankles. So I increased the dosage again starting today and am going to see how I do. I have very good insurance but even if you do not, there are some coupons for belbuca that I got from my doctor (there may be some online as well).

I am just wondering if anyone else has tried belbuca and what your experience was. I also wanted to share mine just in case someone might be interested in checking it out by discussing it with your doctor. My pain is quite severe and has been for many years so finding something that helped even a little was really quite encouraging. Just wanted to share it with the group.

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@baxtersmom, while you wait for other members to share here in Chronic Pain, here is a reference that a member made to belbuca, https://connect.mayoclinic.org/discussion/can-i-go-from-daily-morphine-to-pain-control-from-cbd-oil/?pg=2#comment-246334.

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@artscaping

@lauren123 Good afternoon. Thanks for your interest. What in particular are you curious about? I am happy to respond. Just need a hint or two. Be happy today.

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@Chris….or, anyone really! Anyone ever tried wild lettuce to replace pharmaceutical pain relievers? They say it is comparable to an opioid. I've tried both the tincture and the capsule, made by Swanson. Is this claim just rubbish, or should I try for a better quality? I am willing to go natura, but can't do MM. Looking for an awesome fix for my awesome pain.

Liked by Parus

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@jmjlove

@Chris….or, anyone really! Anyone ever tried wild lettuce to replace pharmaceutical pain relievers? They say it is comparable to an opioid. I've tried both the tincture and the capsule, made by Swanson. Is this claim just rubbish, or should I try for a better quality? I am willing to go natura, but can't do MM. Looking for an awesome fix for my awesome pain.

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I saw a couple of years where this old time help for pain reappeared. It started appearing online in capsules, etc. From what I know one may as well have a nice Romaine salad. Only one variety may have some benefit and doubtful it would help with chronic pain. My input.

Liked by jmjlove

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@skippyr

This is my first post. I’ve had rectal pain non stop for seven years. It started after having a BCIR surgery. That is an internal bag for waste made out of small intestine so it can be emptied using a catheter. My rectum was removed forty years ago due to ulcerative colitis. I had illiosmy for two years then a Koch Pouch which is similar to the BCIR. It lasted for many years until 2000 with the valve failed and started leaking. The rectal pain is unrelenting and feels like a hot jagged post twisting and poking into my backside. I’ve tried everything from a hysterectomy to a spinal laminectomy to every kind of injections you can think of. I’ve recently received a DRG Stimulator that goes under the tailbone. It is the first thing to give any marked relief but the pain is still such that my life is very restricted. Has anyone ever heard of a intrathecal pump for pain in this area?

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@skippyr I don't have any experience with your condition, but I do know that surgeries cause internal scar tissue in the fascia. Possibly, myofascial release physical therapy could help that. Here is some information I collected about MFR that you may be interested in. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi fellow pain warriors. I'm 54. My Fibro took a bad turn 2 1/2 years ago and I'm slowly doing better after having a lot of physical therapy and nerve blocks, ablations, and massage. I've been following Dr. Skip Pridgin's protocol since 11/2018 and am feeling less pain. He's doing a large study using 500 mg of Famcyclovir 2X/day & 200 Celebrex with the morning Famvir. Google him for more info. I also take Methaxalone, Magnesium, Curcumin, D3, a good multivitamin 2X/day, HRT, Imitrex, Plaquenil (am also diagnosed with Lupus), and I just got Botox injections for my migraines. I was a long distance runner, golfer, tennis, cycler etc. etc. It's been quite an adjustment. I'm doing Acceptance and Commitment Therapy for Pain which has been very helpful. Other than the constant engulfing pain, I'm happily married, have 3 grown kids and 3 older stepkids, 2 dogs, a cat, a parrot (great chatty companion), and wonderful friends. I'm not dying and try to focus on how blessed I am.

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