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.

@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I'm still trying to find the correct dose.

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Hi Roland, I'm really sorry to hear you are in so much pain. I know it's really difficult when you can't get any relief no matter what you do. I'm hoping they can help you get the pain under control. Hoping that tomorrow is a much better and pain free day.

John

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@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I'm still trying to find the correct dose.

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Hi Roland - I'm on my 3rd week at 5 mg and was doing pretty good until this morning. I'm feeling some stiffness and pain in my shoulders and arms. Hoping you have a pain free day today. John

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@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I've seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

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Chronic pelvic pain can be from numerous issues. Endometriosis, adenomyosis, scar tissue, interstitial cystitis, ovarian cysts, bowel issues such as IBS or constipation. I suffer endometriosis and have had years of drs who put it down as cramps. It took me 20 years for a dx. Laparoscopic procedure was done and that is the only way to dx endometriosis- adenomyosis is uterus. How are your menstrual cycles? Thyroid? And yes the thyroid can even cause havoc to female issues. The endocrine system is all connected.

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I haven't posted much lately as I've been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn't know what. We sold our inn 2 years ago, and moved to California. We're staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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@mikween

HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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Hi @mikween, thank you for the update. I'm glad the doctor was able to help you. I'm not sure about the DMSO for foot cream. It may help with pain but won't do anything for the numbness. I haven't tried it but have most all of the others before I saw a neurologist who told me there are no topicals that help with the numbness.

Hoping you have a pain free day.

John

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@gailb

I haven't posted much lately as I've been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn't know what. We sold our inn 2 years ago, and moved to California. We're staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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Wow! That's great! I am so glad you experienced such relief. I will have to try it. Nothing ventured, nothing gained.

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Hello,
My name is Gail and I live in Austin, TX and am 62 years old. I have scoliosis which I did not know about until about 10 years ago. I was having pain down my left leg and my left ankle was constantly hurting and swollen. My back did not hurt at that time so I went to a podiatrist to see about my ankle. He finally said he thought it was coming from my lower back at which time I had an MRI of my lumbar area and that is when the scoliosis was discovered. While it is only noticeable if you know about it, on the MRI it looks very scary. Also degenerative disc disease, facet disease, a few bulging discs,etc. After several courses of unsuccessful PT I was beginning to feel weakness in my legs. After some testing I was told that I probably had two problems--severe arthritis in my left ankle that 3 different orthopedic foot and ankle guys said I needed to have a subtailor (sp?) fusion and I was also sent to a spine surgeon who specializes in scoliosis in adults as no normal back surgeon would see me. The fix for the back was just too aggressive for me at my age (basically a fusion with a rod from the lumbar area up to at least the bra line). So I declined. I did however have my left ankle fused in 2011. It has helped with the pain some but has not stopped swelling. In 2012 I had the pins taken out of my ankle because it had completely fused and also had my sural nerve cut to stop some of the nerve pain in my left foot. I have lived with nerve pain in my foot and ankle since about 2008 and recently the nerve pain is down both of my legs. They burn all of the time. I have been told I have scoliosis, stenosis and spondylosis and that the only thing that can be done is the surgery described above. As far as meds go, I take 4 Norco 10/325 tablets each day, recently went up from 3 per day. I also take 3000 mg of Gabapentin. At one time lower doses of these two meds helped a lot. Now I don't know how much they helpl. I have tried injections in my back and have not had any very long-term effects so have decided not to do them anymore. I have tried the spinal cord stimulator trial where they keep the device on the outside of your body and just place a temporary lead at the point in your spine that is the problem area. I found this very annoying and unstable. I hear they have improved them but I just don't think it is for me. Meanwhile the pain is unbearable and I am a college professor on my feet several hours each day, so I took some of my over 3000 hours of sick leave to just re-evaluate things. I wonder if there is some new miracle procedure out there for people like me. I was in ballet from about age 5 until about age 30 and after that worked out several times a week until I no longer could. I hate not being active. I do what I have to do in the mornings and then I come home and lay down with my feet elevated. I have a wonderful chocolate lab that I cannot walk so I hired someone to walk him. I have a garden that I can minimally work in so of course I have hired some folks to help with it but I wish I could do it myself. I live alone and actually like it but am worried I won't be able to for as long as I had hoped. I guess I will stop there. I have left out all the witch doctors and alternative med folks I have been to and I am sure a million others. I have spent an awful lot of money and I have good insurance but some things that you want to try when you are in such pain are not covered. I am sure everyone in this group knows all about the money part of chronic pain. I wonder if there is anything out there that I have not come across since for several years I have just accepted that the only option was the awful sounding surgery which I have my doubts would help even if I were willing to go through it. Thanks in advance for any suggestions, ideas or anything you are willing to share.

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@baxtersmom

Hello,
My name is Gail and I live in Austin, TX and am 62 years old. I have scoliosis which I did not know about until about 10 years ago. I was having pain down my left leg and my left ankle was constantly hurting and swollen. My back did not hurt at that time so I went to a podiatrist to see about my ankle. He finally said he thought it was coming from my lower back at which time I had an MRI of my lumbar area and that is when the scoliosis was discovered. While it is only noticeable if you know about it, on the MRI it looks very scary. Also degenerative disc disease, facet disease, a few bulging discs,etc. After several courses of unsuccessful PT I was beginning to feel weakness in my legs. After some testing I was told that I probably had two problems--severe arthritis in my left ankle that 3 different orthopedic foot and ankle guys said I needed to have a subtailor (sp?) fusion and I was also sent to a spine surgeon who specializes in scoliosis in adults as no normal back surgeon would see me. The fix for the back was just too aggressive for me at my age (basically a fusion with a rod from the lumbar area up to at least the bra line). So I declined. I did however have my left ankle fused in 2011. It has helped with the pain some but has not stopped swelling. In 2012 I had the pins taken out of my ankle because it had completely fused and also had my sural nerve cut to stop some of the nerve pain in my left foot. I have lived with nerve pain in my foot and ankle since about 2008 and recently the nerve pain is down both of my legs. They burn all of the time. I have been told I have scoliosis, stenosis and spondylosis and that the only thing that can be done is the surgery described above. As far as meds go, I take 4 Norco 10/325 tablets each day, recently went up from 3 per day. I also take 3000 mg of Gabapentin. At one time lower doses of these two meds helped a lot. Now I don't know how much they helpl. I have tried injections in my back and have not had any very long-term effects so have decided not to do them anymore. I have tried the spinal cord stimulator trial where they keep the device on the outside of your body and just place a temporary lead at the point in your spine that is the problem area. I found this very annoying and unstable. I hear they have improved them but I just don't think it is for me. Meanwhile the pain is unbearable and I am a college professor on my feet several hours each day, so I took some of my over 3000 hours of sick leave to just re-evaluate things. I wonder if there is some new miracle procedure out there for people like me. I was in ballet from about age 5 until about age 30 and after that worked out several times a week until I no longer could. I hate not being active. I do what I have to do in the mornings and then I come home and lay down with my feet elevated. I have a wonderful chocolate lab that I cannot walk so I hired someone to walk him. I have a garden that I can minimally work in so of course I have hired some folks to help with it but I wish I could do it myself. I live alone and actually like it but am worried I won't be able to for as long as I had hoped. I guess I will stop there. I have left out all the witch doctors and alternative med folks I have been to and I am sure a million others. I have spent an awful lot of money and I have good insurance but some things that you want to try when you are in such pain are not covered. I am sure everyone in this group knows all about the money part of chronic pain. I wonder if there is anything out there that I have not come across since for several years I have just accepted that the only option was the awful sounding surgery which I have my doubts would help even if I were willing to go through it. Thanks in advance for any suggestions, ideas or anything you are willing to share.

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@gailg

I would recommend giving the stimulator another try. I never felt anything uncomfortable, except that when I laid down in bed, I felt a buzzing that would have been unpleasant, if I hadn't been able to adjust it. The one I'm getting is a Burst, from St. Jude and now bought out by Abbott.

During the week I had the trial implant, I had almost no pain. It was wonderful!

Jim

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@gailb

I haven't posted much lately as I've been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn't know what. We sold our inn 2 years ago, and moved to California. We're staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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It's been 2 days and I'm still pain free! It's amazing how just the "laying on of hands" in intuitive ways can make such a huge difference! I was thinking about it, and none of my doctors actually touch me when I see them. They rely totally on technology in making a diagnosis. I think using both touch and technology would give them more complete information.

I still have the slight achy pain from my sciatic nerve, but it's not bad at all. I would never have discovered that my worst pain was from the strong muscle/ligament in my groin! I knew that when the doctor asked where my pain was, I could feel it in my hip and thigh, calf, and ankle, but I never identified it in my groin. Jan zeroed in on my groin muscle within about 15 minutes the first treatment. She said it could have been a result of the very successful surgery.

Wow, I'm still amazed. I knew taking all the medicine before was masking my pain, not really relieving it. I will not take medication in the future unless I have thoroughly researched it beforehand. Just because a doctor prescribes it doesn't mean I should take it. I recommend trying all physical and mental therapies before you begin medication to help physical pain.

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