Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

REPLY
@jocy

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Jump to this post

Hello @jocy, Welcome to Connect. I have osteopenia and lower back pain/aches but I'm older than dirt. I can't imagine trying to figure out how to deal with the pain and struggle you are going through at such a young age. I think you are on the right track trying to learn more about your condition and how you can better manage it. Since you mentioned having scoliosis at a young age, I'm wondering if you might find some suggestions in the following discussions:
-- Scoliosis: In pain morning noon and night: https://connect.mayoclinic.org/discussion/in-pain-morning-noon-and-night/
-- Scoliosis and Chronic back pain: https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/

Here are some articles that also might be helpful. The second link has many reference links at the bottom for more information:
-- How to manage osteoporosis before the age of 50: https://www.sciencedirect.com/science/article/pii/S0378512220302619
-- Patient education: Osteoporosis prevention and treatment (Beyond the Basics):
https://www.uptodate.com/contents/osteoporosis-prevention-and-treatment-beyond-the-basics

It's understandable to not want to use so much medication. Has your doctor offered any suggestions on alternative treatments that might help?

REPLY
@jocy

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Jump to this post

I have been in chronic pain since about 35, I’m 68 now.
My pain was caused by hitting a stalled 18 wheeler when I was 24.
Pain is pain no matter what. I know when you say no one understands. Unless you have had it you can’t understand. Forgive them and be thankful that they do not have to experience what you have been going through. It saddens me to know how young you are and having to deal with such pain. What has helped me through the years is yoga and working out with no more than 25lb weights at the gym. Yoga is not only an exercise but a way of life. I started when I was 17. Yoga you stretch and learn balance. It will teach you to take your cleansing breaths. Usually 3 deep cleaning breaths will help settle you a bit. I now get on the floor a lot and stretch my back out. After my third neck surgery this past June, my balance has been off a bit. You will learn balance not just physically but in everything you do. Also a singing bowl. Putting a singing bowl on your stomach and then strike it and let the healing vibrations enter every cell in your body.
At the gym, 3 times a week. I have always felt better after a 30-1hr workout. At first I used no weight, I would just make sure my form was good and go through the motions. You have to add your weight gradually. I hope this helps.

REPLY
@jocy

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Jump to this post

One more thing. Pain management. The pain meds. OMG! How I wish there was a better way. I’ve been in them for 15 years. I used to be on so much more and had somewhat of a life. Then the federal gov stepped in and cut us down so much that my body actually experienced a nervous breakdown. After they lowered our medication I then had no life. I no longer could go out dancing or even think to date. My last medication was at 4 o’clock so by 7:30 I was ready to get off the couch and to be laying in bed. The only relief I have had was either sitting or lying down. I bought an IPad because there was no way I could sit at a desk to look at a computer. With my second surgery C3 and C4 were chocking my spinal cord. After removal of those bones and fusion I though my intense pain was relieved. Wrong! As I was healing the bones in back of my neck caught a ligament. They then had to enter the back of my neck and remove C3, 4 and 5 and put two rods in. It took more than four months of healing and no extra pain medicine from my orthopedic surgeon so I suffered a lot. Now I have upper back pain and found out I have scoliosis probably from the accident. don’t ever let your body get stiff and this is one way that yoga will help you. People are surprised even my doctor that I have such a movement in my neck after all my surgeries and all my plates and rods. I’ve met people that have had surgery in their neck and they can’t move their neck without moving their shoulders so don’t allow your body to get stiff learn yoga the best advice I can give you and do as little of a pain medication as possible. Just remember there is no way that you can take pain medication for years and not become an addict. Think about that one.

REPLY
@jocy

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Jump to this post

Hello @jocy. I feel for you, having experienced pain that has kept you from normal activities and lifestyles for a young person. I can tell you that I've been in a place where I've felt those same kind of losses too and it sucks, but you have to try your best to not sit and wallow in it, hard as that sounds.

Theres absolutely nothing wrong with admitting that you are scared and sad. Your in uncharted territory, who wouldn't feel that. I'm glad you came to Connect to release some of those feelings. It matters to feel supported and encouraged.

You must feel relief to have a pain management doctor on your side that believes there is a cause for your symptoms, and is pursuing further testing. That's really good news. I hope the results bring about more clarity. When do you expect to hear back?

Besides pain meds, how have you currently been managing symptoms? What kind of exercise do you get? How about your mental health? Do you speak with a therapist or have ways of reducing stress?

REPLY
@drg24242

Hi Rachel and everyone. My CRPS is continuing to progress. It started on left upper body and in last week continued now to right upper body and in last 48 hours into my left toe.
I saw on this sight a treatment called Ketamine Pain Treatments. I've followed up and found that the head doctor at UPMC Pittsburgh, Pa. pain manag ,Where I live, does these and called his office this morning. His nurse told me that he was booked until late January. I explained my situation. I recieved a call back an hour later that they had a cancellation. on 1/9/23. I jumped at it. I understand that the Ketamine treatment is not covered buy any insurance.
Any idea how much each treatment will cost me? Depending on haw much I may have to do a reverse mortgage on my home.Pleae respond from anyone as how much this will cost me. Please advise. Thank's Darryl

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Hi Darryl - How's it going? Have you had any luck pursuing ketamine treatments for pain?

REPLY
@jocy

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Jump to this post

Hi, I'm Suzi and I feel badly for you for suffering for so long and being only 20. Wish I had suggestions for you to really help. I keep reading that what we eat can really play a big part in all areas of our health. I am not a good example, but with all your pain, see if a nutritionist can help. I've read many resourses from the Mayo Clinic that list what foods can help and what to avaoid. If there is anything other than the meds that would really help, it would be worthwhile. Ask for a specialist to get some help. I'm not suggesting false adds we see everywhere for cures.
I am going to try to do better with my diet as well. I'll be praying for you to find the right people who will listen to you and help you soon!

REPLY

Hi I'm Suzi,
I tried to find a group dealing with lymphedema because I am having so much pain. I thought I wrote something to introduce myself already, but can't find it. After six surgeries on my right foot to fix my right big toe, I have chronic lymphedema. I had a great surgeon who tried to replace the cartilage but my body rejected everything he used. He fused it so I don't feel bone on bone with every step. I needed more surgeries to have all the metal and screws taken out as soon as my bone fused. Now I have damaged lymph nodes that cause constant swelling and pain. The pain started five years ago, but the lymphedema is from the surgeries the last three years. I count my blessings but I am frustrated because only those with constant pain can understand. I've had PT and now have a pump to help move the harmful fluid out. Naproxen and tylenol help a little. We are a military family, serving for four generations. I know this is so minor compared to the men and women who've lost limbs and have terrible wounds. I feel guilty complaining at all. Thought someone in this group might understand and have suggestions. Thanks

REPLY
@suzig

Hi I'm Suzi,
I tried to find a group dealing with lymphedema because I am having so much pain. I thought I wrote something to introduce myself already, but can't find it. After six surgeries on my right foot to fix my right big toe, I have chronic lymphedema. I had a great surgeon who tried to replace the cartilage but my body rejected everything he used. He fused it so I don't feel bone on bone with every step. I needed more surgeries to have all the metal and screws taken out as soon as my bone fused. Now I have damaged lymph nodes that cause constant swelling and pain. The pain started five years ago, but the lymphedema is from the surgeries the last three years. I count my blessings but I am frustrated because only those with constant pain can understand. I've had PT and now have a pump to help move the harmful fluid out. Naproxen and tylenol help a little. We are a military family, serving for four generations. I know this is so minor compared to the men and women who've lost limbs and have terrible wounds. I feel guilty complaining at all. Thought someone in this group might understand and have suggestions. Thanks

Jump to this post

Hi Suzi, It's easy to find your previous posts. Just click on you profile icon at the top of any Connect screen and select Profile & settings which takes you to your profile description. On the left side of the screen click on Comments and you can view any of your previous comments.

There are quite a few discussions on lymphedema. If you go to the Connect home page by clicking on Connect at the top left side of any page on Connect it will take you to the home page. Here's the direct link to the home page - https://connect.mayoclinic.org/. Once on the home page, type lymphedema in the search box directly above the list of discussions and press Enter. Then you will see the list of discussions for lymphedema. See the attached screen example.

Here's a discussion one on legs:
-- Lymphedema in legs: https://connect.mayoclinic.org/discussion/lymphedema-in-legs/

Hope this helps.

REPLY
@johnbishop

Hi Suzi, It's easy to find your previous posts. Just click on you profile icon at the top of any Connect screen and select Profile & settings which takes you to your profile description. On the left side of the screen click on Comments and you can view any of your previous comments.

There are quite a few discussions on lymphedema. If you go to the Connect home page by clicking on Connect at the top left side of any page on Connect it will take you to the home page. Here's the direct link to the home page - https://connect.mayoclinic.org/. Once on the home page, type lymphedema in the search box directly above the list of discussions and press Enter. Then you will see the list of discussions for lymphedema. See the attached screen example.

Here's a discussion one on legs:
-- Lymphedema in legs: https://connect.mayoclinic.org/discussion/lymphedema-in-legs/

Hope this helps.

Jump to this post

John,
Thanks for your help. I will try the links you gave me. Sorry for any duplication.
Suzi

REPLY
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