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.

@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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@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 John well after what I went through on Monday 5-15 I am doing much better. Made an emergency visit to the Dr. on that day & he changed my intake for the prednisone. Remember I was taking 20mg every other day. I am now on 20 a day. 10mg in the AM & 10mg PM. Also he did prescribe oxycodone 7.5 mg. Now I do not take the oxy unless the pain comes back. Monday evening I did take the oxy. it relieved the pain in my hips, back & neck but not in my shoulders so I took another on Tuesday morning along with my prednisone that worked. Now just taking my pred. & am doing fine. This is crazy but right now I am pain free hey whatever works. All I know is that shoulder pains having PMR really hurts I would say Monday on a 1-10 pain scale I was a 9. Hope you are doing better.

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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, doing pretty good today. Just have some minor pain/stiffness in my shoulders, arms and hands with the 5 mg. It’s only at about a 1 or 2 level on my pain scale and more like an ache so I can live with it. Hoping it will eventually subside and I can go down to 4 mgs or prednisone. Glad you are doing better too. I’m not quite as active as you are – I’m 74. I still ride a recumbent exercise bike every morning for about 30 minutes to get my legs loosened up but I need to step up my exercises for the upper body. Hoping for warmer weather soon so I can at least get some exercise doing yardwork.

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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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Hello @mikween, I actually fused my left ankle December 2015 because of end-stage arthritis. My ankle joint was so arthritic the bones were basically breaking apart and essentially fusing themselves anyways.

If I can be honest, it’s the hardest thing I’ve ever had to endure. I’ve also had my right knee replaced and that was easier in comparison. It was hard because it is a LONG recovery. There is a lot of waiting because you have to let the bones solidify (fuse) which means months of non-weight bearing. I’m an active person, so the laying around with limited activity was really hard for me to mentally handle.

However, I can now say that it was the right choice for me. My ankle was so bad that there were days I could not walk, times when my ankle would randomly give out, or times when it would lock so bad I’d have to “loosen” it with my hands by basically snapping it loose. Now, the ankle is pain free and my left leg has become my stable leg again that takes some of the pressure off of my right ankle (also end-stage) and right knee. I can walk much further, and aside from the occasional annoyance of not being able to move it when you think about it, it has been worth it.

Please feel free to ask me more questions about ankle fusion, I have more to share if you have specific questions.

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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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Sounds like you are also making some headway, what I am finding out from you & my Dr. that the right dose has to be found & for me it looks like I found it. Now on the 31st I will start my weaning process will see how that goes. I think the oxy. did me a lot of good only took 2 of them & now the pred. is doing the rest. This morning I was able to do an hour at the gym got home went up on my roof & swept my pellet stove chimney, still feel good with absolutely no discomfort at all. Now whoever came up with this ailment?
Will keep in touch & let you know how all this progresses lets both hang in there.

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Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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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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Sounds like a plan!

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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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@gailb How wonderful! I am so glad that some alternative therapies like this are becoming more accepted. I would imagine you get something similar in CA, I hope so.
Feel good!
JK

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@tinydancer

I don’t know where to start, other than saying that I have been “here” (in chronic pain land) for longer than I realized. I’ve had headaches since I was 10. At first they weren’t chronic, but at some point over the years they have become an almost daily occurrence. I have a diagnosis of chronic migraine. I am not a candidate for the typical daily preventive meds as I have ridiculously low blood pressure. I have been using Botox for about 6 months now. There is a slight decrease in pain days but it has not been stellar. My forehead does look fabulous though 😉
I’m not sure that the migraines are actually typical migraines, or if there is something else going on. I definitely know that the occipital nerve is involved by the location and type of pain that I experience. But I also had an MRI done before receiving the Botox- they found numerous tiny white matter foci, and a lot of demyelination. To add to the back story, I have recently had difficulty with the vision on my right (intermittent blurry- have to close it and use my left instead) and great difficulty swallowing. The pain is crushing me, and to be honest I’m a bit scared. Do migraines typically change over time or am I missing something? I’m stuck waiting in cue for a neuro. The family doctor is not helping at all. Is there anybody out there like me?

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@tinydancer, hello and welcome to Mayo Clinic Connect! Thank you for expressing your concerns here. You have come to the right place!

Here http://mayocl.in/2rCQYLt is some information I dug up on Mayo’s website regarding side effects from OnabotulinumtoxinA, that include difficulty swallowing.
Also, If you follow this next link you will be able to join other conversation with members on connect, discussing Migraine’s http://mayocl.in/2r3bMzI There is a lot to learn from others on how they cope with symptoms- sharing information is key. 🙂

Do you seek care here at Mayo? If you weren’t aware, there is a headache clinic in Rochester that patients are often referred to.

Have you ever considered or tried acupuncture? I have a family member that suffers from chronic migraines and has had great success with it.

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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I am sorry for your suffering. I didn’t know that nerves grow back that is interesting. I have a body corsett or cast that chinches me in all the way up to my armpits. I was going to have another fusion since the initial one failed to fuse. Maybe wearing it could help. I had the cast made but then saw another surgeon who strongly suggested not to do it and live with the pain since thoracic surgery is so dangerous. Living with this has proved to be very challenging and disheartening at times but I like your attitude and wish for you, good days ahead.
Sincerely,
Kristine

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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Hello Scott! Welcome to our Mayo Clinic Connect community. Thank you for serving our country!

http://mayocl.in/2rCM3Kz- Please follow this link to other conversation taking place on Connect. There, you will meet other members that have also experienced spinal fusion and will find some of the information they have shared helpful.

You said you are trying acupuncture, I found this article http://mayocl.in/2aMkr2V on cupping therapy, another alternative medicine option interesting.
My husband suffers from severe leg muscle cramping (he broke his femur in his 20’s) and notices it’s worse in the spring and when he hasn’t been diligent with his water consumption. He also eats bananas- sometimes 2 or 3 a day and swears that it helps his muscle cramps.

@scottyrussell, have muscle relaxers helped with the cramping?

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