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.

@jenapower

Hi Jerry,
What do you think the problem is? What is been the reaction when you tell your doctors what you think it is? Do they have any ideas of their own? Jennifer

Jump to this post

to hazel from peach: thank you for this information i am aware of the doctors hours when they first start out. they are horrendous, it should not have to be. i will try to get a nurse practitioner as my primary.

REPLY

Starting a new topic is a great idea, but I do think Mayo and Connect are aware that this thread is getting too many emails. My impression is they’re working on the problem and a way to solve it. We just need to be patient, and start new topics that are pertinent to our own problems.

I’ve had good and bad doctors. I’ve had good doctors that get overwhelmed and turn into not such great listeners. I have searched a lot of people, and gone to have first appointments to see what they’re like. It’s a lot of work but it’s worth it if you find the right person. Nurse Practitioners can be really good, also I had some bad ones that have kind of a Dr complex, are arrogant, and want to act just like the doctor and have you treat them like their gods. There’s just a lot of people in the healthcare, you have to find one that matches you. Jennifer

REPLY
@artscaping

I have been disheartened by the posts about physicians/surgeons/dentists who appear to be less than caring. My experience has been totally different. As my structural issues became more critical and CMPS and SFN started impacting pain levels and quality of life….i received nothing but genuine support and understanding through all the surgeries and recoveries with only one exception. I sort of think that when our physicians realize that they can’t totally “fix us” they become saddened by the fact the contemporary medicine with all of the technology and pharmaceutical options just doesn’t do the whole job. We age, we fall, we risk, we cope and we struggle. Recently my neurologist simply said….”I know your are suffering and I would give anything to be able to help you more”. My orthopedic surgeon devoted his private time to coming to my room in the evening to just chat and provide compassionate care. His words when there was nothing more that he could do that would help, “I am so sorry, Chris”, followed by a warm hug and his cell phone # for “just in case”. He also made sure my favorite wine was on the tray at dinner time after one of the surgeries. I check in every 6 months with my pcp and that is always a welcoming and supportive experience. I am always open and honest about my choice of alternative therapies and the rest of the specialist team are accepting and interested in the efficacy of those options. I don’t think I could ask for anything more.

Jump to this post

@artscaping. I, too, have had the vast majority of my doctors be caring, intelligent and professional people. I have only had a few doctors who have not been very nice, and I stopped going to them. It is sad that many have not had good experiences with their doctors. I find P.A.s to not be that good, but nurse practitioners and doctors have been really good. Perhaps they aren’t teaching good bedside manners at medical schools any longer? Also, medicine isn’t like it used to be. Lots of red tape and insurance problems. Many doctors feel overwhelmed and disheartened that they spend more time arguing with insurance companies than practicing medicine. I pray those of you who have not found a good doctor will come across one soon. It makes all the difference in the world with the treatment of your health.

REPLY
@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

Jump to this post

@JustinMcClanshan: new poster virtuous69 here. What does the
@ symble mean in a post?
Also if a poster wants to privately repond to another, how is that done? I also joined the depression thread and met a very nice moderator with similar life problems be that I want to respond to, but not the whole world. Appreciate by yr reply to my question.

REPLY

To all members of the Chronic Pain group

Several of you have posted about the issue of too many emails. The current system works well for low to moderately active groups, i.e., groups that get 1-20 messages a day or even more. But once a group crosses the threshold of 40+ messages, it is untenable, overwhelming and frustrating. We are developing a solution for the notification system to accommodate those groups on Connect that experience high volume. Find out more about managing your notifications here:

– [Tip] How to Update Your Notification Settings https://connect.mayoclinic.org/discussion/tip-how-to-update-your-notification-settings/

The Chronic Pain group has become a victim of its success. Like us, I’m sure that you’re glad that so many people have found this welcoming and informative community to talk and solve issues related to pain and pain management. This introduction thread, “Chronic Pain members – Welcome, please introduce yourself,” is a great place to connect with other members and to discover what issues you have in common. Unfortunately, as a community grows, the intro thread can get quite noisy.

We encourage people to start new discussion threads based on specific topics of interest and to connect with the people who share that interest. Or check the list of existing topics and join in: https://connect.mayoclinic.org/group/pain/

How to start a new discussion topic
1. Go to the Chronic Pain homepage https://connect.mayoclinic.org/group/pain/
2. Click START A DISCUSSION.
3. Write a title. Be concise, but describe what you want to talk about.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

Find out more about How to get started on Connect: https://connect.mayoclinic.org/get-started-on-connect/

REPLY
@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

Jump to this post

Hi @virtuous – the “@” symbol is used along with the Connect members username to identify a user. So Justin’s Connect name is @JustinMcClanahan and mine is @johnbishop. If you want to send a Connect member a private message, click on his Connect name and it will show you their profile page. There is a Send Private Message button at the bottom of their profile.

John

REPLY
@artscaping

I have been disheartened by the posts about physicians/surgeons/dentists who appear to be less than caring. My experience has been totally different. As my structural issues became more critical and CMPS and SFN started impacting pain levels and quality of life….i received nothing but genuine support and understanding through all the surgeries and recoveries with only one exception. I sort of think that when our physicians realize that they can’t totally “fix us” they become saddened by the fact the contemporary medicine with all of the technology and pharmaceutical options just doesn’t do the whole job. We age, we fall, we risk, we cope and we struggle. Recently my neurologist simply said….”I know your are suffering and I would give anything to be able to help you more”. My orthopedic surgeon devoted his private time to coming to my room in the evening to just chat and provide compassionate care. His words when there was nothing more that he could do that would help, “I am so sorry, Chris”, followed by a warm hug and his cell phone # for “just in case”. He also made sure my favorite wine was on the tray at dinner time after one of the surgeries. I check in every 6 months with my pcp and that is always a welcoming and supportive experience. I am always open and honest about my choice of alternative therapies and the rest of the specialist team are accepting and interested in the efficacy of those options. I don’t think I could ask for anything more.

Jump to this post

I agree with you 100 percent. Recently I saw a pain doctor at a prominent center for my Complex Regional Pain Syndrome. My CRPS has spread and I was (and am) looking for more coordinated care. Unfortunately, the doctor I saw told me that CRPS doesn’t spread (she said it’s Complex REGIONAL Pain Syndrome meaning it doesn’t move to other areas). Dr. Schwartzman researched and wrote an excellent article on how it can affect other areas of the body, but she had not heard of him. I just put together a short note thanking her for seeing me and enclosing the article. Sometimes it blows my mind when looking for help I have to “educate.” However, as you stated so well, helping the doctor help you–or tilling the ground so that others may benefit.

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Jena, i have 2 fused discs and need another fusion and i,also, am in a quandary about getting it done because it leads to other problems but what do you do when it is the only choice you have? Marield65

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

I think I’ll eventually have to have some sort of surgery, but I had an epidural yesterday based on a new MRI and as of just today it’s worked to relieve my cervical pain. I’m actually happily amazed. I do know it’s just masking the problem, but it gives me time to think and continue research my options.

REPLY
@JustinMcClanahan

To all members of the Chronic Pain group

Several of you have posted about the issue of too many emails. The current system works well for low to moderately active groups, i.e., groups that get 1-20 messages a day or even more. But once a group crosses the threshold of 40+ messages, it is untenable, overwhelming and frustrating. We are developing a solution for the notification system to accommodate those groups on Connect that experience high volume. Find out more about managing your notifications here:

– [Tip] How to Update Your Notification Settings https://connect.mayoclinic.org/discussion/tip-how-to-update-your-notification-settings/

The Chronic Pain group has become a victim of its success. Like us, I’m sure that you’re glad that so many people have found this welcoming and informative community to talk and solve issues related to pain and pain management. This introduction thread, “Chronic Pain members – Welcome, please introduce yourself,” is a great place to connect with other members and to discover what issues you have in common. Unfortunately, as a community grows, the intro thread can get quite noisy.

We encourage people to start new discussion threads based on specific topics of interest and to connect with the people who share that interest. Or check the list of existing topics and join in: https://connect.mayoclinic.org/group/pain/

How to start a new discussion topic
1. Go to the Chronic Pain homepage https://connect.mayoclinic.org/group/pain/
2. Click START A DISCUSSION.
3. Write a title. Be concise, but describe what you want to talk about.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

Find out more about How to get started on Connect: https://connect.mayoclinic.org/get-started-on-connect/

Jump to this post

@JustinMcClanahan Great plan for handling lots of conversations on a general topic!

Teresa

REPLY
@JustinMcClanahan

To all members of the Chronic Pain group

Several of you have posted about the issue of too many emails. The current system works well for low to moderately active groups, i.e., groups that get 1-20 messages a day or even more. But once a group crosses the threshold of 40+ messages, it is untenable, overwhelming and frustrating. We are developing a solution for the notification system to accommodate those groups on Connect that experience high volume. Find out more about managing your notifications here:

– [Tip] How to Update Your Notification Settings https://connect.mayoclinic.org/discussion/tip-how-to-update-your-notification-settings/

The Chronic Pain group has become a victim of its success. Like us, I’m sure that you’re glad that so many people have found this welcoming and informative community to talk and solve issues related to pain and pain management. This introduction thread, “Chronic Pain members – Welcome, please introduce yourself,” is a great place to connect with other members and to discover what issues you have in common. Unfortunately, as a community grows, the intro thread can get quite noisy.

We encourage people to start new discussion threads based on specific topics of interest and to connect with the people who share that interest. Or check the list of existing topics and join in: https://connect.mayoclinic.org/group/pain/

How to start a new discussion topic
1. Go to the Chronic Pain homepage https://connect.mayoclinic.org/group/pain/
2. Click START A DISCUSSION.
3. Write a title. Be concise, but describe what you want to talk about.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

Find out more about How to get started on Connect: https://connect.mayoclinic.org/get-started-on-connect/

Jump to this post

Ditto what Teresa said Justin!

REPLY

Hello All!
My name is Chelsea and I am with Mayo Clinic Concierge and can be here to assist you with any questions regarding the Rochester community and your experience here at Mayo Clinic. Welcome to the group!

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Hi Jenna, I’ve had several epidurals and they did work for a short time. Too much prep time with hospital schedule, two weeks of dietary rrestrictions Just temporary fix.for me. but I heard about a new technique that the jury isn’t totally in yet and it’s a procedure where they take stem cells from your spine and your hip and put it back into your degenerative discs
I have an acquaintance who had that done and she’s doing just fine.I also saw her Ortho that she went to and they said it’s not for everyone and it’s very very expensive not covered by insurance .the individual I’m referring to she said she’s doing fine so I wonder if someday that procedure will be available for all of us who have degenerated back problems of all the various types .signed virtuous 69

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Virtuous, Marield65 here. Keep us up to date on the stem cell treatment, I don’t know what my discs are, but I have had a fusion and 4 other back surgeries and I would like to know more about it. Where was this done? Thank you.

REPLY

Virtuous, I actually have talked to a couple doctors about stem cell therapy. The neurosurgeon I’m going to actually does stem cell therapy along with all the other surgeries. I see him next week for a follow up and I want to ask more about it. Unfortunately what I’ve heard is that it works better for cartilage in knees, non-union of broken bones and things like that, I haven’t gotten a negative answer for using it for my discs yet though. I would actually much rather do something like that even if it’s expensive. It makes so much more sense to have your body heal itself, then put artificial metal in my neck.

We’re are you located? I’m in Southern California. The doctor I’m going to is head of neurosciences/neurosurgery and has a very good reputation. I’m just afraid he’ll say no. I do know that the epidural is just a mask and will wear off fairly quickly.

I watch my mother through this for years and finally be forced to have back surgery when she was in her 80s. She was too old to do it and didn’t survive. I don’t want to wait that long.

Still interested in hearing from somebody that’s actually had the disc replacement surgery. Thank you, Jennifer

REPLY
Please login or register to post a reply.