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.

@peggyella

Good morning, Ronnie. I’m so sorry about your loss. Truly. I know my husband, Barry, may die the next time he gets cancer. If not, he may have another hemorrhagic stroke and the neurologist said he’ll never survive another one like that. It was a miracle he survived the first one. He has a hole in the frontal lobe so his ability to handle his mood and anxiety are nil. I never know when I walk into the room what mood he will be in, I know God is using it to teach me more patience. I take care of him but he takes care of me as well. So I know you must miss your husband very much. It is hard to nurse someone with cancer.

Because God healed me from my abusive childhood, I have a passion to help other abused women. I also work with the homeless and most all of them have been abused, men and women. I am sponsoring a few women right now to guide them in the right direction to recovery. One of them nursed her husband with bone cancer for three years until he died. It put her over the edge and they found her on the sidewalk unable to tell the Deputy anything except, “my husband died.“ It is very sad.

Please forgive me because my memory is so bad… LOL… But did you write about having chronic pain? I can’t see the post. I’ve been in chronic pain from various sources for 49 years. I can’t say that you ever get used to it. I gave up on pain medicine a couple of years ago and told them to get me off of it. Because I was on the pump 10 years, I t took 11 months to wean me, but I’m glad that I did. Everything worked for a year or so, but eventually I needed more and then a different opiate.

I started out on morphine after few years it didn’t work anymore so they put me on snail venom. That worked until I started having audio hallucinations. I’m not kidding! I heard music all the time. I couldn’t make out any words but I could hear the instruments and voices in the background. No, I was not schizophrenic! LOL. It got so bad and so loud that one day I called my sweet neighbor and asked her if her teenagers were blasting a stereo. She said she was taking a nap and the kids weren’t home! Boy did I feel like an idiot. When I first told my doctor she said she had never read that but when she looked at blogs, lots of people complained about it.

So finally it was Dilaudid. When I had my last spinal surgery for degenerative disc disease, the lunatic surgeon cut the lead to my spine and I overdosed. He said it was an accident!!! My local pain management doctor and neurologist said that no surgeon accidentally cut the lead to the intrathecal pain pump. It was in his way and he was lazy. When I return from my follow-up visit I said to him, “Dr., you put me through hell.“ It didn’t go over too well. LOL. Like I would ever go back to him. For 12 days I hallucinated, Head sweats, nausea and vomiting constantly. I couldn’t even keep down water. When they finally discharge me, I was sent to a nursing home for rehab for two months. It was awful. So unless I have a broken bone or surgery, I won’t take narcotics ever again. I have had to since then and I only take them for a few days. I saw it destroyed my father. He was already an angry man, but it turned him into a raging maniac. Constant doses of hydrocodone day after day, year after year, decade after decade. If he tries to skip a few days, he has rebound migraines that make him feel like he’s going to die or wants to.

I never impose what I need to do for myself on others. Some people it works for and I’m happy for them. Have a nice day my friend and God bless you. I’m in Florida also.

Peggy

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@peggyella
Hi Peggy,
First, let me say, that you are a very strong person! Your ability to take care of your husband and yourself is admirable.
I must correct you. You misunderstood my post. I did not lose my husband (thank God), but I did lose my brother-in-law to melanoma.
Yes, I suffered from chronic pain brought on by Fibromyalgia and numerouse spinal issues. For years, I tried many procedures that I thought might help, but non did. I did NOT take pain meds. I had to work, drive and think and I did not feel comfortable taking pain meds. Basically, I just suffered. After years of trying, I decided that the only course of action, for me, was surgery. If I did not have surgery, the chances of having any quality of life would have been nil.
Just about one year ago, I had my first spinal surgery. I had C5/6 replaced. The surgery went well and the recovery was quick!!! Within a couple of weeks, all the symptoms and pain I was experiencing was gone.
About 5 months ago, I had my 2nd surgery. I had what is call an X-Lift Fusion on L3/4. This surgery was very painful and the recover was VERY long! It took about 3 months for the pain to go away!
I am happy to say that I am now pain-free!!!! I do have other issues going on around my spine and it is starting to look like surgery 3 might happen. If so, I am hoping it will be more like the first one than the 2nd one. So, in the meanwhile I am enjoying my pain-free life since I don't know what the future holds.
That is enough about me!
I love the work you are doing with abused and homeless people! It must give you great satisfaction to know you are making such a difference in the lives of others. I always wanted to work with women who either has never worked or have fallen on hard times and need to prepare for the work world. Maybe one day. I cannot commit to anything because I never know from one day to the next how I will feel or what I will be physically able to do. I don't want to disappoint people who would be expecting me and counting on me.
BTW……there is certainly NOTHING wrong with asking for help for yourself when YOU NEED IT!!!! If you want to help others, you need to learn to accept help for yourself!.
I live in central Florida and used a FANTASTIC pain doc and neurosurgeon if you need one.

Best wishes to you!
Ronnie (GRANDMAr)

Liked by peggyella

@grandmar

@peggyella
Hi Peggy,
First, let me say, that you are a very strong person! Your ability to take care of your husband and yourself is admirable.
I must correct you. You misunderstood my post. I did not lose my husband (thank God), but I did lose my brother-in-law to melanoma.
Yes, I suffered from chronic pain brought on by Fibromyalgia and numerouse spinal issues. For years, I tried many procedures that I thought might help, but non did. I did NOT take pain meds. I had to work, drive and think and I did not feel comfortable taking pain meds. Basically, I just suffered. After years of trying, I decided that the only course of action, for me, was surgery. If I did not have surgery, the chances of having any quality of life would have been nil.
Just about one year ago, I had my first spinal surgery. I had C5/6 replaced. The surgery went well and the recovery was quick!!! Within a couple of weeks, all the symptoms and pain I was experiencing was gone.
About 5 months ago, I had my 2nd surgery. I had what is call an X-Lift Fusion on L3/4. This surgery was very painful and the recover was VERY long! It took about 3 months for the pain to go away!
I am happy to say that I am now pain-free!!!! I do have other issues going on around my spine and it is starting to look like surgery 3 might happen. If so, I am hoping it will be more like the first one than the 2nd one. So, in the meanwhile I am enjoying my pain-free life since I don't know what the future holds.
That is enough about me!
I love the work you are doing with abused and homeless people! It must give you great satisfaction to know you are making such a difference in the lives of others. I always wanted to work with women who either has never worked or have fallen on hard times and need to prepare for the work world. Maybe one day. I cannot commit to anything because I never know from one day to the next how I will feel or what I will be physically able to do. I don't want to disappoint people who would be expecting me and counting on me.
BTW……there is certainly NOTHING wrong with asking for help for yourself when YOU NEED IT!!!! If you want to help others, you need to learn to accept help for yourself!.
I live in central Florida and used a FANTASTIC pain doc and neurosurgeon if you need one.

Best wishes to you!
Ronnie (GRANDMAr)

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Thanks, Ronnie. I’m in Sarasota, south of Tampa. LOL, I guess just about everyone knows where Sarasota is. You are too kind. I get such satisfaction from helping people who are less fortunate than I. Even though one of the women showed up extremely intoxicated today and wanted to fight me. LOL. The director made sure she was near me and kept the lady in line until she left on foot. When this lady is not intoxicated, she is the sweetest thing. It’s terrible what alcohol can do to a person.

I’m sorry about your brother-in-law passing. And also for your chronic pain and multiple spinal surgeries. You’re an inspiration! Living with chronic pain, as we all know, is extremely challenging every day of our lives. Got bless you and everyone who is suffering, my friend.

The reasons that you stated regarding why you would not use pain medications are the same reasons that I quit using them. They made me completely dysfunctional and eventually did not alleviate my pain. I would rather be alert and able to drive and spend my time in ministry than to be somewhat out of pain and in a stupor and a wheelchair at home like I was two years ago. The pain does make it more difficult, but as you know, life must go on. Either that, or we can choose to give up. I chose to live in pain. I did for decades until I tried the pump, so I. can again. It’s good and quite necessary for many. I have people in my life with everything from lupus to cancer to advanced stages of AIDS. Without pain medication and medical marijuana they would have no quality-of-life whatsoever. So for them, it is a necessary evil.

The first spinal surgery in 1997 did alleviate my pain. It was cervical and I had an excellent surgeon. My recovery was quicker than prognosed even though the fibromyalgia did cause me to take longer to heal than the average person of my age.

The second more recent surgery, about eight or 10 years ago, was lumbar. I think it was the same disks that you mentioned. Did you also have a lot of instrumentation inserted? I had a few cages with nuts and bolts, but unfortunately, it did not eleminate the pain or the forward bend. I can move pretty quickly with my walker. But take it away… And my spine just wants to collapse. The pain is always there. Due to my stomach problems, I can occasionally tolerate a few ibuprofen. It gives me slight relief for a short time… not really enough to mention.

When I was at the Mayo Clinic Clinic, Jax, in 2016-17, I had two neurologists and a spinal surgeon examine me and run tests. I have a large deformation on the thoracic spine that is visible through some shirts, so I’m careful about what I wear. They told me that if I had it removed, it would just grow back. Fortunately, that particular protrusion is not painful.

The same physicians also diagnosed a pinched L/5. I was able to tolerate it until I began having sciatica on one side. Within a few months, I developed it on both sides. It doesn’t usually bother me when I am upright, but lying down is so painful it is difficult to fall asleep. I slept for one and a half hour last night and then I just had to get up.

My insomnia is so crazy, but that has become normal for me. Somehow, God has enabled me to function not only in spite of pain, but in spite of no sleep as well. LOL. I have to laugh about it because it is so rediculous! That is why I often don’t tell people about my health issues for fear that they will think I am exaggerating to gain attention. In fact, my step-daughter is one of those people. She was so unkind to me that we haven’t spoken in nearly two years. I tried to reconcile with her, but she lives in a fantasy world. So I’ve forgiven her and let it go. As I like to say, let GO… D.

I know a lot of us feel that way because unless someone has suffered, I find that they are often quick to judge and can be superficial. They live in a La La Land of their own making. That is exactly why I stress to people not to judge those less fortunate because we know how it feels when people act as if we are exaggerating our symptoms. That’s why this site is wonderful that we who are suffering with physical or emotional pain can relate to one another and encourage each other. It hurts when people act as if we are exaggerating how are symptoms or health problems.

If it looks like I’m going to require a third surgery like you are facing, I will be in touch to find out about your doctor. The hard part is that my spouse cannot stay with me while I am going through testing or surgery. It was hard enough when I was in Tampa for the last surgery and he had to drive so many miles. I am concerned about his driving and safety.

Thank you again for your support. You would be an asset to any ministry! Enjoy your pain-free days. God bless you, and please stay in contact. I’d like to know how things go for you.

I pray you and all our friends sleep peacefully tonight.
Peggy 💖

@peggyella

Thanks, Ronnie. I’m in Sarasota, south of Tampa. LOL, I guess just about everyone knows where Sarasota is. You are too kind. I get such satisfaction from helping people who are less fortunate than I. Even though one of the women showed up extremely intoxicated today and wanted to fight me. LOL. The director made sure she was near me and kept the lady in line until she left on foot. When this lady is not intoxicated, she is the sweetest thing. It’s terrible what alcohol can do to a person.

I’m sorry about your brother-in-law passing. And also for your chronic pain and multiple spinal surgeries. You’re an inspiration! Living with chronic pain, as we all know, is extremely challenging every day of our lives. Got bless you and everyone who is suffering, my friend.

The reasons that you stated regarding why you would not use pain medications are the same reasons that I quit using them. They made me completely dysfunctional and eventually did not alleviate my pain. I would rather be alert and able to drive and spend my time in ministry than to be somewhat out of pain and in a stupor and a wheelchair at home like I was two years ago. The pain does make it more difficult, but as you know, life must go on. Either that, or we can choose to give up. I chose to live in pain. I did for decades until I tried the pump, so I. can again. It’s good and quite necessary for many. I have people in my life with everything from lupus to cancer to advanced stages of AIDS. Without pain medication and medical marijuana they would have no quality-of-life whatsoever. So for them, it is a necessary evil.

The first spinal surgery in 1997 did alleviate my pain. It was cervical and I had an excellent surgeon. My recovery was quicker than prognosed even though the fibromyalgia did cause me to take longer to heal than the average person of my age.

The second more recent surgery, about eight or 10 years ago, was lumbar. I think it was the same disks that you mentioned. Did you also have a lot of instrumentation inserted? I had a few cages with nuts and bolts, but unfortunately, it did not eleminate the pain or the forward bend. I can move pretty quickly with my walker. But take it away… And my spine just wants to collapse. The pain is always there. Due to my stomach problems, I can occasionally tolerate a few ibuprofen. It gives me slight relief for a short time… not really enough to mention.

When I was at the Mayo Clinic Clinic, Jax, in 2016-17, I had two neurologists and a spinal surgeon examine me and run tests. I have a large deformation on the thoracic spine that is visible through some shirts, so I’m careful about what I wear. They told me that if I had it removed, it would just grow back. Fortunately, that particular protrusion is not painful.

The same physicians also diagnosed a pinched L/5. I was able to tolerate it until I began having sciatica on one side. Within a few months, I developed it on both sides. It doesn’t usually bother me when I am upright, but lying down is so painful it is difficult to fall asleep. I slept for one and a half hour last night and then I just had to get up.

My insomnia is so crazy, but that has become normal for me. Somehow, God has enabled me to function not only in spite of pain, but in spite of no sleep as well. LOL. I have to laugh about it because it is so rediculous! That is why I often don’t tell people about my health issues for fear that they will think I am exaggerating to gain attention. In fact, my step-daughter is one of those people. She was so unkind to me that we haven’t spoken in nearly two years. I tried to reconcile with her, but she lives in a fantasy world. So I’ve forgiven her and let it go. As I like to say, let GO… D.

I know a lot of us feel that way because unless someone has suffered, I find that they are often quick to judge and can be superficial. They live in a La La Land of their own making. That is exactly why I stress to people not to judge those less fortunate because we know how it feels when people act as if we are exaggerating our symptoms. That’s why this site is wonderful that we who are suffering with physical or emotional pain can relate to one another and encourage each other. It hurts when people act as if we are exaggerating how are symptoms or health problems.

If it looks like I’m going to require a third surgery like you are facing, I will be in touch to find out about your doctor. The hard part is that my spouse cannot stay with me while I am going through testing or surgery. It was hard enough when I was in Tampa for the last surgery and he had to drive so many miles. I am concerned about his driving and safety.

Thank you again for your support. You would be an asset to any ministry! Enjoy your pain-free days. God bless you, and please stay in contact. I’d like to know how things go for you.

I pray you and all our friends sleep peacefully tonight.
Peggy 💖

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@peggyella
Good Sunny Morning!
Wow, I cannot believe how you and I are facing some of the same challenges.
The neurosurgeon I use is actually in Lutz; he also has an office in Tampa.
Sadly, my pain doctor would probably be too far for you, unless you don't mind travelling. He is located in Altamonte Springs.
We live in the Lakeland area so we are smack in-between Orlando and Tampa so we frequent both areas.
If you are interested in the docs, I will be happy to give you their information.
I just started with a neurologist, too. She seems to be very good and is in Whesley Chapel.

Have a sunny rest of the day!
Ronnie (

Hello @albiet, welcome to Mayo Clinic Connect. I'm glad you found Connect and I want to thank you for the private message. I thought I would take the opportunity to answer your message in the Chronic Pain members – Welcome, please introduce yourself discussion so that you can meet other members and learn what they are doing for treatments.

You mentioned that 8 years ago a biopsy showed that you had small fiber neuropathy. You also said you have had massive burning and pain in 1990 and 1998. After a car accident in 2004 you have multiple herniations in your cervical and thoracic spine and your pain has started again after 8 years. You asked if you need to see doctors locally before going to Mayo Clinic.

To answer your question, I don't believe you need to see a doctor locally before going to Mayo Clinic but a referral may help. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I would also like to invite @jenniferhunter and @artscaping who have posted about pain from spine injuries and conditions to see if they are able to offer any suggestions.

@albeit have you seen any doctors recently for your pain?

@johnbishop

Hello @albiet, welcome to Mayo Clinic Connect. I'm glad you found Connect and I want to thank you for the private message. I thought I would take the opportunity to answer your message in the Chronic Pain members – Welcome, please introduce yourself discussion so that you can meet other members and learn what they are doing for treatments.

You mentioned that 8 years ago a biopsy showed that you had small fiber neuropathy. You also said you have had massive burning and pain in 1990 and 1998. After a car accident in 2004 you have multiple herniations in your cervical and thoracic spine and your pain has started again after 8 years. You asked if you need to see doctors locally before going to Mayo Clinic.

To answer your question, I don't believe you need to see a doctor locally before going to Mayo Clinic but a referral may help. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I would also like to invite @jenniferhunter and @artscaping who have posted about pain from spine injuries and conditions to see if they are able to offer any suggestions.

@albeit have you seen any doctors recently for your pain?

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@albeit
The recommendation I would make is to see a neurologist who is familiar with spine injuries. If it has been 8 years since you had imaging done, you don't know if the herniations you described in your spine have progressed or if there is nerve or spinal cord impingement. When a disc is injured and bulges, it causes the distribution of pressure to be uneven, and that can cause bone spurs to grow. If the disc is damaged enough, the jelly like nucleus can be expelled through cracks in the outer fibrous layer. That can happen years after an injury because discs naturally dry out and shrink a bit as we age, and posture plays a role as well because poor posture will also cause an uneven load on the discs. Physical therapy can help try to restore the normal curvatures in the spine and reduce pain, but that also depends on what else is going on.

I am a Mayo spine surgery patient, and when I requested an appointment at Mayo, 5 local surgeons had missed understanding the diagnosis, and I had MRI and X-ray imaging that I sent in for review. I had been turned down for 2 years and none would help me. If you wish to start that process at Mayo, you might ask to be seen by a spine center neurologist first and they would make referrals based on what they find. If you possibly could be a surgery candidate, they would arrange an appointment with a specialist. I did request an appointment with a specific neurosurgeon when I sent in my imaging, and he had me see the neurologist he works with, who then ordered the tests I needed, and some consults with other specialists outside of neurosurgery. All of that was completed before my surgery consult and he had all the information he needed and he explained what he could do to help me.

Spine injuries are different in that the symptoms they cause vary a lot depending on what part of the spine is affected. There is a dermatomal map of the body that shows where all the nerves go after leaving the spine, and this applies if the problem is at a nerve root (in between the vertebral bodies). If the problem is spinal cord compression inside the central canal, it's more complex, and not so easy to understand specifically what would be affected, but that causes a lot of issues and weakness and can affect the entire body even if there is only one level of the spinal cord that is compressed. That was what happened with my case. I had pains all over my body from cervical stenosis, and atrophy of arm and shoulder muscle.

With your injuries from the car accident, there could be some additional issues with something like thoracic outlet syndrome. It can be caused by a whiplash or repetitive stress. TOS will also cause pain and numbness in arms and hands as well as decreased circulation. A lot of doctors do not understand TOS (which I have), and that is also why I came to Mayo because they can diagnose and treat it, and I needed to be where they understood both TOS and spine injuries.

Here are some links that may help.
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961
https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://en.wikipedia.org/wiki/Dermatome_(anatomy)
https://teachmeanatomy.info/the-basics/embryology/dermatomes/

@johnbishop

Hello @albiet, welcome to Mayo Clinic Connect. I'm glad you found Connect and I want to thank you for the private message. I thought I would take the opportunity to answer your message in the Chronic Pain members – Welcome, please introduce yourself discussion so that you can meet other members and learn what they are doing for treatments.

You mentioned that 8 years ago a biopsy showed that you had small fiber neuropathy. You also said you have had massive burning and pain in 1990 and 1998. After a car accident in 2004 you have multiple herniations in your cervical and thoracic spine and your pain has started again after 8 years. You asked if you need to see doctors locally before going to Mayo Clinic.

To answer your question, I don't believe you need to see a doctor locally before going to Mayo Clinic but a referral may help. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I would also like to invite @jenniferhunter and @artscaping who have posted about pain from spine injuries and conditions to see if they are able to offer any suggestions.

@albeit have you seen any doctors recently for your pain?

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@albiet
Welcome,
I read John's response to you. I would just like to add that you should not put all your eggs in one basket as far as getting an appointment at the Mayo Clinic.
I don't about other facilities, but I've tried to get an appointment 4 times. I rejected 3 times. I was told that they had the max number of patients with my issues, even though I had been through many, many traditional and not so traditional procedures and shots.
The 4th time, I came close. I had a referral from my neurosurgeon to see a neurologist. When Mayo called to make my appointment, I was told I needed to see some sort of other doctor. You guessed it, they were full up, too.
I am just telling you all this because I don't want you to be disappointed should you not be able to get an appointment. And if you do, that would be FANTASTIC!!!!!!!!
Best of luck to you!
Ronnie (GRANDMAr)

@seanivor

Hi I'm Sean, I have inguinal nerve entrapment which has led to chronic pain, my symptoms are a sore inflamed left groin area which comes with continued standing and walking, this leads to coldness & numbness down my left leg and pelvic pain , I was also diagnosed with small fiber nephropathy .
I have a spinal cord simulator since 2012.

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Hello @seanivor, you mentioned small fiber neuropathy, here is a discussion dedicated to just that that you may want to check out and participate in, https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.

Liked by grandmaR

@JustinMcClanahan

Hello @seanivor, you mentioned small fiber neuropathy, here is a discussion dedicated to just that that you may want to check out and participate in, https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.

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@JustinMcClanahan
Hi!
I just read @seanivor post and your reply. I found it very interesting and I followed the link you provided as well as other links in other areas.
I've had many issues with my spine for which I have had 2 surgeries this year. Thank goodness the chronic pain I lived with for 10+ years are gone. Last summer, before my 2nd surgery, I found that I could not move my foot from left to right or raise my toes when my right foot was flat. My toes were also numb. My right foot was OK although it did not move normally. My surgeon did not know if it was coming from my lumbar issues, but the problem did not get any better after my surgery. I've had many tests including blood, x-ray, MRI, mylogram (ouch!!!), EEG for the nerves, and some sort of ultrasounds by a vascular surgeon. Nothing was definitive.
My neurosurgeon is perplexed and sent me to a neurologist. Upon a thorough exam, she ordered more blood work and another EEG (EMG???). I go tomorrow.
I do have osteo-arthritis and fibromyalgia. Until I read the info about small-fiber neuropothy I thought that some of the things that has been happening to me was just my body breaking down or getting older (just turned 64 this week). Anyway, I have dry eyes, dry mouth, I get itches in my feet and/or toes that I feel like I cannot scratch hard enough to reach it, I get shooting pains in in feet that do not last more than a little while (I attritubted it to spasms), I do not sleep well at all (I am lucky to get 3-4 hours and that is NOT straight through), no bladder or bowel issues (except constipation), I cannot stand in one spot for long, I fall, on occasions, I do get dizzy and so on. The info talked about being diabetic or pre-diabetic. Two years ago, I was pre-diabetic. I had weight loss surgery and lost between 80-90 pounds (depending on the day) and all my blood levels were perfect. Except…..when the neurologist checked my blood, my thyroid was EXTREMEMLY LOW. For years and years, even before my weight loss, I had a slow thyroid, but with meds, it has been fine AND I just had blood work about 4 months ago and it was fine. This becomes more interesting!!!!
I've copied some of the things I read and will bring it up to the doc. It is not something I WANT, but I think it is something that needs to be looked into.

Sorry for going on and on….
Ronnie (GRANDMAr)

@JustinMcClanahan

Hello @seanivor, you mentioned small fiber neuropathy, here is a discussion dedicated to just that that you may want to check out and participate in, https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.

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thank you Justin

Hello. Chronic pain has been part of my life since age 14. I am 60 now. Not much of a group person here, but thought I'd give this a whirl. I've already posted in the stroke group. Large R cerebellar stroke, almost 3 rears ago, resulting in disabilities and head banging pain in my….ummm….head. Been reading the trigeminal posts. Atypical TN here, caused by nic in nerve during removal of salivary gland tumor. RA patient, both knees replaced. Had TOS (thorasic outlet syndrome) with bloodclots/eneurysm (sp?) Surgery done, 7 1/2 hours, 2 ribs removed, 1 scalene muscle removed, and one shiny brand new artery patch. Not proud of my medical history. But by sharing reasons for ongoing, unrelenting pain, any suggestions might, hopefully, be more specific. My body has betrayed me from head to toe, inside and out. It's funny, but I spent my life running, walking, trampolining, doing aerobics, as much to stay healthy as because I liked to exhaust
myself, exercising/sweating/strengthening. Forced to stop at 52. My 2 fake knees, well actually everything from the waist down, abruptly began a screaming protest. Joint swelling, inflammation skyrocketted, forcing me to stop my beloved torture sessions. Which is what they had become.

I've had 6 kids, worked on farms for 24 years. Raising food and animals. Always had a sense of humor, learned to be pretty self sufficient, and resourseful. Been married for 40 years. I know how to bare the burdens, work hard, psyche myself out to meet whatever is thrown my way, with varying degrees of success. I am 60 now and feel like a broke down old warhorse. The conditions I mention at the beginning of this "book", lol, have sucked the life and vitality out of me. And thats just the ones i mentioned! My pain level is probably not unheard of, but it truly affects my quality of life. I am allowed monthly pain med, which seems to only scratch the surface. I go off about 10 days a month, so it will work again for the next 20 days without having to increase dosage or mgs. Have been on same dosage for 2 years. 10 hard days, but worth it for the productivity of my next 20 days. I am now caring for my 88yr old father, part time. I do not hate my life. I am richer than rich, and blessed beyond measure, just not in the ways of the world, if you know what I mean. I feel a bit like a loser relying on chemicals to help get through my days, and get anything done. Gabapentin and similar meds, didn't work. Lyrica and like medicines gave me black outs. My medical conditions could go into remission, which would suit me very well! But in the meantime I find the urine tests, appointments, pharmacist attitudes….though i have never had any type of flag…..and public shame for chronic pain patients, who dare seek relief from *gasp* opioids, a bit taxing on my general good nature and fairly healthy self esteem.

I guess this is not seeking answers to questions. More like blowing off steam, and telling a story everyone's heard a million times. Thanks for providing a platform for one to do that. I'm tired of pain, but at least I know I'm alive. I want to do much more than exist, which is why I take the meds. I do have a choice.

Edited to add: I will not feel offended if this type of post is not very welcome here. I realize all the above is in a round about way, support for the very meds the medical community would rather find a way around.

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@jenniferhunter

@albeit
The recommendation I would make is to see a neurologist who is familiar with spine injuries. If it has been 8 years since you had imaging done, you don't know if the herniations you described in your spine have progressed or if there is nerve or spinal cord impingement. When a disc is injured and bulges, it causes the distribution of pressure to be uneven, and that can cause bone spurs to grow. If the disc is damaged enough, the jelly like nucleus can be expelled through cracks in the outer fibrous layer. That can happen years after an injury because discs naturally dry out and shrink a bit as we age, and posture plays a role as well because poor posture will also cause an uneven load on the discs. Physical therapy can help try to restore the normal curvatures in the spine and reduce pain, but that also depends on what else is going on.

I am a Mayo spine surgery patient, and when I requested an appointment at Mayo, 5 local surgeons had missed understanding the diagnosis, and I had MRI and X-ray imaging that I sent in for review. I had been turned down for 2 years and none would help me. If you wish to start that process at Mayo, you might ask to be seen by a spine center neurologist first and they would make referrals based on what they find. If you possibly could be a surgery candidate, they would arrange an appointment with a specialist. I did request an appointment with a specific neurosurgeon when I sent in my imaging, and he had me see the neurologist he works with, who then ordered the tests I needed, and some consults with other specialists outside of neurosurgery. All of that was completed before my surgery consult and he had all the information he needed and he explained what he could do to help me.

Spine injuries are different in that the symptoms they cause vary a lot depending on what part of the spine is affected. There is a dermatomal map of the body that shows where all the nerves go after leaving the spine, and this applies if the problem is at a nerve root (in between the vertebral bodies). If the problem is spinal cord compression inside the central canal, it's more complex, and not so easy to understand specifically what would be affected, but that causes a lot of issues and weakness and can affect the entire body even if there is only one level of the spinal cord that is compressed. That was what happened with my case. I had pains all over my body from cervical stenosis, and atrophy of arm and shoulder muscle.

With your injuries from the car accident, there could be some additional issues with something like thoracic outlet syndrome. It can be caused by a whiplash or repetitive stress. TOS will also cause pain and numbness in arms and hands as well as decreased circulation. A lot of doctors do not understand TOS (which I have), and that is also why I came to Mayo because they can diagnose and treat it, and I needed to be where they understood both TOS and spine injuries.

Here are some links that may help.
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961
https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://en.wikipedia.org/wiki/Dermatome_(anatomy)
https://teachmeanatomy.info/the-basics/embryology/dermatomes/

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Jennifer, I appreciate you mentioning Thorasic Outlet Syndrome. I was found to have bloodclots in both arteries of right lower arm. This led to the discovery of an aneurysm in my shoulder and a diagnosis of TOS. By the time they found the aneurysm, I was in crisis. Then was sent to University of Michigan for a complete work up and they quickly scheduled surgery. They removed 2 ribs and my scalene muscle to get at and repair the artery. It took about 7 1/2- 8 hrs, and the recovery was long and painful. Long hospital stay. Long months of therapy. But if it had not been for the PA at my docs office I may not be here. The aneurysm was fast growing and very large by the time they repaired it. I have not found a TOS group here, so it's probably not very common. Point being, complications can arise which will take a sore shoulder and aching arm to a whole new level. If someone does not get a satisfactory diagnosis, this possibility should be persued. Since this progressed to a dangerous point for me, I would hate to not give at least a warning to anyone suffering TOS symptoms, so they can at least be tested for it.

Thank you Jennifer for bringing this little known, but nasty condition to light. 🙂

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

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@liz223

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

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Hi betty, you h-ve a lot goinh on. I agree on the injections bu/ what kind of surgery are you considers?

@liz223

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

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@liz223 , thank you for the welcome. I've had fibromyalgia 20+yrs. I has been real bad the last 8 or so yrs. It's everyday , bad most days . But I've recently been put on a med. that seems to be causing several side effects, one being headaches increase in stiffness and muscle spasms. Life's never been harder . If have the support of my sweetheart but my new difficulties are straining our close relationship. I have no other supporting people in my life . The thought of losing him because of these things has become an all consuming fear. I can't get back to where I was when I was at least coping with my pain and other issues. I need help but have not found it from my medical professionals. I don't know what to do to help myself. Feel everything slipping away. He gets upset to hear my weakness spoken out loud. . So thinks for giving me a place I can speak honestly. GOOD luck to each of you with you struggles.

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@tdib

@liz223 , thank you for the welcome. I've had fibromyalgia 20+yrs. I has been real bad the last 8 or so yrs. It's everyday , bad most days . But I've recently been put on a med. that seems to be causing several side effects, one being headaches increase in stiffness and muscle spasms. Life's never been harder . If have the support of my sweetheart but my new difficulties are straining our close relationship. I have no other supporting people in my life . The thought of losing him because of these things has become an all consuming fear. I can't get back to where I was when I was at least coping with my pain and other issues. I need help but have not found it from my medical professionals. I don't know what to do to help myself. Feel everything slipping away. He gets upset to hear my weakness spoken out loud. . So thinks for giving me a place I can speak honestly. GOOD luck to each of you with you struggles.

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@tdib
Welcome!
I am so sorry for what you are going through physically and now emotionally! It is never easy when one partner has a chronic condition and the other partner has to watch and help.
I've known my hubby since I've been 9, together since I've been 14 and married 45 years. I've had Fibromyalgia even longer than you, before most people even knew what it was. I've also had other chronic situations with my health. Even now, I've got physical issues that I've been dealing with for about 10 years. For sure, he has had to deal with the harder part of our relationship. And, when you have been together as long as we have, lots happens. When we get together with someone, we never know what the future will hold, but when you love someone, you need to take the good with the bad; it is not as if we want these things to go wrong. Have you tried to sit down with your sweetheart to have a heart to heart?
In the meanwhile, let me share what I did to help me with my symptoms. First, my doctor put me on a mild med to help me get into a deep sleep. Most people with Fibro do not get into the deep restorative sleep, which we need for our bodies to heal from the day. I fought taking this for years since I did not like taking anything more than aspirin. But I relented and it helped a lot. Next, I went on a diet. I lost about 25 pounds and that helped with the excess pressure on my joints (I still needed to lose more, but that amount helped). Lastly, I started to exercise. I know, there are days even getting out of bed hurts. I started my 'exercise' by just walking. I found a path to walk. Each night my hubby and I would walk. Halfway through, my husband would literally drag me to the end. Eventually, I was able to do it myself. I did NOT speed walk, just walk. Once I was able to walk, I started going into the gym and using the treadmill and then other equipment. It took time, but soon all my symptoms were gone. That, my friend, was more than 20 years ago. Now, the only time I have pain from the Fibro is if someone gets into my trigger points.
Hope this helps.
Ronnie (GRANDMAr)

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