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.

hellow.İ’m Suavi Guvenc.İ live in Ankara Turkey.İ’m on vacation until the end of septenber.Sorry.

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Hello Linda. How did you were diagnosed? When I was a teenager one specialist in clinic medicine told me I had fibromyalgia. He made made me a corporal test. He touched several points causing strong pain. (No treatment for fibromyalgia?. Then came the poly-radiculo-neuropathy diagnose, with treatment.
Because of my migraine my neurologist prohibited these foods:
black tea, chocolate, lacteous, banana and mango, tomatoes, beans, eggs, proceeded food, white bread. He said: all this foods irritate Central Nervous System.
I comment about this because my dayly diet is breakfast (1 cup of coffe, 1 cup of not balck tea, 2 two slides of bread). Launch (white rice, boiled chicken, vegetables or potato, or sweet potato). Dinner, the same.

Before this strong crisis started. I wet under a storm rain and. My dad gifted me an almond milk package. I drank it in the evening and late at nigth it started the migraine. I didn´t related. Next day I drank again and that was the point of begening. And among all the medications, increase carbamazepine plus clonazepan, prednizone, (which is dangerous for me), paracetamol of 1g and B complex, I can say injections of difenidramine and duralgine has been the only which bring me some relief. I think I did an allergic reaction to that milck of almond…!

What do you think of this Linda?
To be seatting hurts. I most go now. Thank´s for nightshade,
Greetings,
Vradi

Liked by sundance6

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@vradifegari Hi thanks for your explanation. Yes I was diagnosed about 30 yrs. ago by the trigger points. There are 18 when he touched them I had 11 of 18. Most of us with fibromyalgia are diagnosed this way . Over the years I have found that Fibro Malic from Vitacost is the only thing that helps me . I tried all the fibro meds out there and either side effects or they just didn't help. I use naturel products no perscription,s for this The use of Epsom Salts helps a lot since the salts are magnesium. A migraine some people get with fibro. I have had headaches but only once a migraine . You have to find out what best works for you as our bodies are all different in the response. .I,m glad you found what helps you

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As lioness says we all are different. But saying that you are so lucky to have found Mayo Connect! You have a wealth of information that you won't find elsewhere. I don't truly know if I would have made it through this last year without all the in put and recomendations from everybody.
My thoughts and prayers that you can find help here.
THanks,
Sundance (RB)

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In Reply to sundance6 @sundance6:
Yes Sundance. A friend of mine treat his cancer first in Florida without positive reults but complications.The hi came to this hospital and now he is FINE. Tomorrow I´ ll research the Fibro Malic.
I will take your thoughts and prayers to be stronger.
You can feel better.

Vrady

Liked by sundance6

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Please keep us posted.
Sundance (RB)

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Hi I am Julie. I just cancelled back surgery on the 17th anterior fusion 3 areas to include plates and screws 6 months to a year recovery, 5 hour surgery. Red cells were high at preopt, I was not comfortable with moving forward. Found a chiropractor who using machines and stretching my spine to decompress and hopefully cause the bulging disc to go back into place. In the meantime I am exhausted, fatigue, having issues with itching and swelling around my ankles, I feel like I should have gone for surgery. I just need to know if I have any other options. I am 65, and I am most comfortable in a chair. The minute I stand the pain start running down buttocks and back of thighs. What is going on. I live in Atlanta anyone have a great doctor. Help!

Liked by grandmaR

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@jkgraham393 Welcome to connect Julie We aren't Dr,s but try to give you our experience on what helps us. glad you found a chiropractor that seems to be helping you . Have you thought it might be your sciatica pain. Ask the Chiropractor about it . When mine is sciatica it runs down leg in back to ankle . I use ice on it at home did he tell you what to use ? Heat or Ice . Pain will cause fatigue I use Ice at times and heat at other times . In the hospital the Dr,s use to use stretching for some back problems Hope you find relieve and a good Dr. What about a neurologist I have one for my nerve pain in my thighs.

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@jkgraham393

Hi I am Julie. I just cancelled back surgery on the 17th anterior fusion 3 areas to include plates and screws 6 months to a year recovery, 5 hour surgery. Red cells were high at preopt, I was not comfortable with moving forward. Found a chiropractor who using machines and stretching my spine to decompress and hopefully cause the bulging disc to go back into place. In the meantime I am exhausted, fatigue, having issues with itching and swelling around my ankles, I feel like I should have gone for surgery. I just need to know if I have any other options. I am 65, and I am most comfortable in a chair. The minute I stand the pain start running down buttocks and back of thighs. What is going on. I live in Atlanta anyone have a great doctor. Help!

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@jkgraham393
Welcome Julie ,
Although we are not doctors who can tell you what to do, we are patients who can share our experiences.

I certainly understand your fear of such a surgery. I am 64 and had a cervical spine surgery at the end of February 2018, folloed be a lumbar spine surgery 7 months later.

Although they say you'll be better in x amount of time, it takes 1 year – 18 months for it to be REALLY HEALED. However, if you don't take care as you do right after surgery, the pain returns.

I personally don't regret having it done! I am painfree for the first time in over a decade.

I suggest you do research to find a neurosurgeon you feel comfortable. You can do this by Googling doctor reviews. Search neurosurgeons. Look through several sites.

Good luck!
Ronnie (GRANDMAr)

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I have done dry needling, tens, Ice, physical therapy, surgery saids it time for surgery!😢

Liked by lioness

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@grandmar

@jkgraham393
Welcome Julie ,
Although we are not doctors who can tell you what to do, we are patients who can share our experiences.

I certainly understand your fear of such a surgery. I am 64 and had a cervical spine surgery at the end of February 2018, folloed be a lumbar spine surgery 7 months later.

Although they say you'll be better in x amount of time, it takes 1 year – 18 months for it to be REALLY HEALED. However, if you don't take care as you do right after surgery, the pain returns.

I personally don't regret having it done! I am painfree for the first time in over a decade.

I suggest you do research to find a neurosurgeon you feel comfortable. You can do this by Googling doctor reviews. Search neurosurgeons. Look through several sites.

Good luck!
Ronnie (GRANDMAr)

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Thanks, they say 6 mo to year for bones to fused with new bone. You say 18 months. Were you pain free doing that time?

Liked by grandmaR

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@jkgraham393

I have done dry needling, tens, Ice, physical therapy, surgery saids it time for surgery!😢

Jump to this post

@jkgraham393 Sounds like you have tried all the things and if it is time for surgery find a good neurosurgeon like grandmaR suggested she has been through a lot of surgeries so may be able to help you more then me . Good luck

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@jkgraham393

Hi I am Julie. I just cancelled back surgery on the 17th anterior fusion 3 areas to include plates and screws 6 months to a year recovery, 5 hour surgery. Red cells were high at preopt, I was not comfortable with moving forward. Found a chiropractor who using machines and stretching my spine to decompress and hopefully cause the bulging disc to go back into place. In the meantime I am exhausted, fatigue, having issues with itching and swelling around my ankles, I feel like I should have gone for surgery. I just need to know if I have any other options. I am 65, and I am most comfortable in a chair. The minute I stand the pain start running down buttocks and back of thighs. What is going on. I live in Atlanta anyone have a great doctor. Help!

Jump to this post

@jkgraham393 Hi Julie. I am a spine surgery patient and had my surgery at Mayo in Rochester. I had 6 surgical opinions before my surgery, and the 5 local surgeons didn't understand my symptoms, and all refused to help. There was a real difference in coming to Mayo in the level of expertise and the team approach to care. I had one level done C5/C6 and I was able to do that without hardware and I stayed in a neck brace until it fused. That may not be an option with multiple levels surgery, and my surgeon only used donor bone as an implant and I healed beautifully. I never experienced compassionate care until I came to Mayo, and it really helped because I was a fearful patient. You have to be able to trust your life and future to the surgeon who operates on you. Get as many opinions as you need to make an informed choice. I found that at Mayo and the surgeon recognized the problem that the other 5 missed. I wish I had come to Mayo first and not wasted 2 years on doctors who would not help.

I need to caution you about chiropractors and bulging discs. The discs are damaged and what happens during an injury is small crack forms in the outer fibrous layer of the disc. Over time this weakens and bulges. The cracks can open and the jelly like substance inside the disc (called the nucleus) can squish out rupturing the disc. As we age, the discs dry out a bit and open the cracks. Once that jelly is out, there is no putting it back, and the uneven pressure on the damaged disc will cause bone spurs to grow as the spine tries to heal itself, and the jelly causes inflammation. That is what happened to me with bone spurs and the disc material compressing my spinal cord in the central canal. At that point, only surgery can decompress the spinal cord and must be done to prevent further damage. The discs are attached to the end plates that are the surfaces of the vertebrae, and they compress and expand with movement. If you allow someone to manipulate your spine with abrupt pressure, you run the risk of disc rupture and the jelly squishing out. If that hits the nerve roots inbetween the vertebrae, it causes constant pain, inflammation, and bone spurs can grow there too. It might be better to work with a physical therapist who rehabs spine patients and preferably one who does myofascial release. This may buy time before surgery is needed. I did that for 2 years, not by choice, but because the 5 other surgeons I saw during that time would not help me, and I wrote to a surgeon at Mayo and asked for an appointment. The spine can also fuse itself if the discs have collapsed which is what the bone spurs are trying to do. It can fuse in an out of alignment position and that isn't a good thing. Compression on nerves and the spinal cord will cause problems that can become permanent.

The itching in your ankles might be caused by your cervical spine. Itching is a low grade pain. My first symptom of spinal cord compression in my neck was ankle pain when I turned my head. Later, I had pain all over from cord compression as the bone spurs grew. I have had a thoracic bulging disc get better as seen on MRI from physical therapy with MFR. You can also have pelvis alignment issues that cause sciatic pain (see last link), or that can be what is called funicular pain that comes in an unexpected place from a problem in the neck. That is what confused the 5 other surgeons who saw me, and they all thought I should only have arm pain. If you haven't had MRIs of your complete spine, you may want to do that to rule out possible problems in other areas. There can be differences between standing, sitting and laying down where one part of the spine slips over another because the disc can't hold it together. Imaging such as Xrays can detect this in different positions.

The anterior spine surgery was not as bad as I expected, and in confronting my fears before my surgery, I reduced my pain a lot. I did not take any pain medication after I left the hospital. I found I could tolerate the pain and I just rested and slept. After 6 weeks there was a lot of improvement, and after 3 months, I was fused, and doing well and started therapy and rehab. Everyone is different, and you should optimize your health before surgery with vitamins, get Vitamin D levels optimized by your doctor, and eat a healthy diet and walk for exercise if you can. The bone keeps filling in for a year or two after a fusion. I traveled to Mayo for my surgery, and it was worth the effort. I got my life back, and my ability to do my artwork that I had lost to my injury. I am so glad that I chose my surgeon and was impressed with his skills and my recovery, so much that I painted his portrait. Here is our discussion about MFR with lots of information and my Mayo patient story. There is some more about the portrait in the Art for Healing discussion on the first page (scroll down).
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://connect.mayoclinic.org/discussion/art-for-healing/
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

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@jenniferhunter

@jkgraham393 Hi Julie. I am a spine surgery patient and had my surgery at Mayo in Rochester. I had 6 surgical opinions before my surgery, and the 5 local surgeons didn't understand my symptoms, and all refused to help. There was a real difference in coming to Mayo in the level of expertise and the team approach to care. I had one level done C5/C6 and I was able to do that without hardware and I stayed in a neck brace until it fused. That may not be an option with multiple levels surgery, and my surgeon only used donor bone as an implant and I healed beautifully. I never experienced compassionate care until I came to Mayo, and it really helped because I was a fearful patient. You have to be able to trust your life and future to the surgeon who operates on you. Get as many opinions as you need to make an informed choice. I found that at Mayo and the surgeon recognized the problem that the other 5 missed. I wish I had come to Mayo first and not wasted 2 years on doctors who would not help.

I need to caution you about chiropractors and bulging discs. The discs are damaged and what happens during an injury is small crack forms in the outer fibrous layer of the disc. Over time this weakens and bulges. The cracks can open and the jelly like substance inside the disc (called the nucleus) can squish out rupturing the disc. As we age, the discs dry out a bit and open the cracks. Once that jelly is out, there is no putting it back, and the uneven pressure on the damaged disc will cause bone spurs to grow as the spine tries to heal itself, and the jelly causes inflammation. That is what happened to me with bone spurs and the disc material compressing my spinal cord in the central canal. At that point, only surgery can decompress the spinal cord and must be done to prevent further damage. The discs are attached to the end plates that are the surfaces of the vertebrae, and they compress and expand with movement. If you allow someone to manipulate your spine with abrupt pressure, you run the risk of disc rupture and the jelly squishing out. If that hits the nerve roots inbetween the vertebrae, it causes constant pain, inflammation, and bone spurs can grow there too. It might be better to work with a physical therapist who rehabs spine patients and preferably one who does myofascial release. This may buy time before surgery is needed. I did that for 2 years, not by choice, but because the 5 other surgeons I saw during that time would not help me, and I wrote to a surgeon at Mayo and asked for an appointment. The spine can also fuse itself if the discs have collapsed which is what the bone spurs are trying to do. It can fuse in an out of alignment position and that isn't a good thing. Compression on nerves and the spinal cord will cause problems that can become permanent.

The itching in your ankles might be caused by your cervical spine. Itching is a low grade pain. My first symptom of spinal cord compression in my neck was ankle pain when I turned my head. Later, I had pain all over from cord compression as the bone spurs grew. I have had a thoracic bulging disc get better as seen on MRI from physical therapy with MFR. You can also have pelvis alignment issues that cause sciatic pain (see last link), or that can be what is called funicular pain that comes in an unexpected place from a problem in the neck. That is what confused the 5 other surgeons who saw me, and they all thought I should only have arm pain. If you haven't had MRIs of your complete spine, you may want to do that to rule out possible problems in other areas. There can be differences between standing, sitting and laying down where one part of the spine slips over another because the disc can't hold it together. Imaging such as Xrays can detect this in different positions.

The anterior spine surgery was not as bad as I expected, and in confronting my fears before my surgery, I reduced my pain a lot. I did not take any pain medication after I left the hospital. I found I could tolerate the pain and I just rested and slept. After 6 weeks there was a lot of improvement, and after 3 months, I was fused, and doing well and started therapy and rehab. Everyone is different, and you should optimize your health before surgery with vitamins, get Vitamin D levels optimized by your doctor, and eat a healthy diet and walk for exercise if you can. The bone keeps filling in for a year or two after a fusion. I traveled to Mayo for my surgery, and it was worth the effort. I got my life back, and my ability to do my artwork that I had lost to my injury. I am so glad that I chose my surgeon and was impressed with his skills and my recovery, so much that I painted his portrait. Here is our discussion about MFR with lots of information and my Mayo patient story. There is some more about the portrait in the Art for Healing discussion on the first page (scroll down).
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://connect.mayoclinic.org/discussion/art-for-healing/
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

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Thank you so much! Your reply has been most informative. I have cervical issues also, but the surgery and chronic pain is in Lumbar 3-6 to fuse 3 and 4 I believe. I have had multiple MRI. I will purse more opinion, but would appreciate a referral to Mayo. Can you share?

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@lioness

@jkgraham393 Sounds like you have tried all the things and if it is time for surgery find a good neurosurgeon like grandmaR suggested she has been through a lot of surgeries so may be able to help you more then me . Good luck

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Thanks

Liked by lioness, sundance6

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