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.

@jesfactsmon

@faithwalker007 @sundance(RB)
As long as you've brought this up I want to take this opportunity to recognize what a gem Mayo Connect is. I think what makes Connect so exceptional of a forum is that it is so well maintained! The fact that there are dedicated moderators, several, not just one, who watch out what goes on here, keeps the riff raff out and stays aware of what people are saying, watching out for new members, etc. is so unusual. I think it's just part of the whole "class act" that Mayo is and has always been since it's founding. I do not have a great deal of previous experience with online forums but I know this is not typical. Thanks to everyone who works for Mayo on this site, and that includes all the volunteer mentors as well. You, obviously, know who you are. What a service this site is!!! When we are out shopping my wife always picks the highest quality item. She says to me "Why not get the best?" Yup, I have learned this from her (my dad always went for the cheapest). Well Mayo Connect, you are the BEST! Hank

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So Very True!
Sundance(RB)

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@faithwalker007

It can literally change the way a person’s entire day is going. We may think it’s nothing or a waste of time but to someone else it can mean the world – or to some, life and death.

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It's so Easy to pass a Little Kindness along to Others!
Sundance(RB)

Liked by Hank

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Hello to Colleen and to all who share with me the frustration of dealing with chronic pain. If all I get is a bit of support from this forum, I will be happy. I HAVE gotten a bit more than that already by reading some of the stories on here. I am 64 years old and getting ready, on top of everything else, to deal with signing up for Medicare. I need to find someone to help me navigate that because of my healthcare needs. I live with chronic back, neck and knee pain that has gotten worse in the last few years. I also have rheumatoid arthritis and osteopenia. I have a wonderfully supportive husband but really worry that all of my ailments and lack of enthusiasm for doing things that we enjoy, are going to take a toll on our relationship. I have had to all but give up on things that I personally enjoy. Now with Covid complicating things, it seems like there is no end in sight. I still work full time and have a somewhat physically demanding job. But I need the exercise it provides as well as the income and great medical benefits. I got through laryngeal cancer in 2016 and this year I am 5 yrs clear of cancer! I am a fighter but I am getting older and tired. I am sick of treading to the pain specialists office monthly for my meds and hate needing those meds. I feel like one of the cattle in the paddock when I go there. I don’t feel that I have any control over that part of my life and am at their mercy. Waiting for hours to be seen for 5 minutes just to get a piece of paper feels degrading! Have had three back surgeries, one of which was a fusion. The levels above the fusion are causing issues so I am trying nerve ablation to ease the pain. Had my numbing trial today and it went well so I hope that it will give me some relief. My next steps in the future are either another fusion or trying nerve stim device in my back. I just want to be able to put it off until retirement. My hubby and I want to retire and go cruising on a sailboat until we can’t do it anymore. I worry that I may not realize our dream. That breaks my heart. If the pain issues get under control, then I can be free to sail off into the sunset! I can’t do that if I need to check in for scripts every month. So, sorry this is long, but my story, like so many others I feel sure, is long and complicated. Just being able to talk about it feels good. Thank you for having a venue where people like me can talk, get help finding answers and where we can all support each other.

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@popeyegurl

Hello to Colleen and to all who share with me the frustration of dealing with chronic pain. If all I get is a bit of support from this forum, I will be happy. I HAVE gotten a bit more than that already by reading some of the stories on here. I am 64 years old and getting ready, on top of everything else, to deal with signing up for Medicare. I need to find someone to help me navigate that because of my healthcare needs. I live with chronic back, neck and knee pain that has gotten worse in the last few years. I also have rheumatoid arthritis and osteopenia. I have a wonderfully supportive husband but really worry that all of my ailments and lack of enthusiasm for doing things that we enjoy, are going to take a toll on our relationship. I have had to all but give up on things that I personally enjoy. Now with Covid complicating things, it seems like there is no end in sight. I still work full time and have a somewhat physically demanding job. But I need the exercise it provides as well as the income and great medical benefits. I got through laryngeal cancer in 2016 and this year I am 5 yrs clear of cancer! I am a fighter but I am getting older and tired. I am sick of treading to the pain specialists office monthly for my meds and hate needing those meds. I feel like one of the cattle in the paddock when I go there. I don’t feel that I have any control over that part of my life and am at their mercy. Waiting for hours to be seen for 5 minutes just to get a piece of paper feels degrading! Have had three back surgeries, one of which was a fusion. The levels above the fusion are causing issues so I am trying nerve ablation to ease the pain. Had my numbing trial today and it went well so I hope that it will give me some relief. My next steps in the future are either another fusion or trying nerve stim device in my back. I just want to be able to put it off until retirement. My hubby and I want to retire and go cruising on a sailboat until we can’t do it anymore. I worry that I may not realize our dream. That breaks my heart. If the pain issues get under control, then I can be free to sail off into the sunset! I can’t do that if I need to check in for scripts every month. So, sorry this is long, but my story, like so many others I feel sure, is long and complicated. Just being able to talk about it feels good. Thank you for having a venue where people like me can talk, get help finding answers and where we can all support each other.

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Dear, popeyegrul, Please don't worry about getting signed up for Medicare! Piece of cake! Depending on which state you live in you must first Google Medicare and then sign up. They'll ask for some personel information. I can't remember because it was 10 years ago for me.
I don't know if they will do it, but maybe the first I would do is to Google Medicare Advantage Plans for your state. A representative may even help you sign up for basic Medicare sign-up. That is just a guess on my part! But irregardless I think it is a MUST to do the Medicare Advantage Plan! It will cover behond what Medicare covers.
Many of these plans go the extra mile for you on medications, ER coverage, In and Out patient coverage,and many other things. If you are still working be smart enough, do not get taken by a fast talking representative! Shop around! There are even sites that will give you a comparisons of all the providers in your state,that is important because different states have different coverage per state.
The next most important thing is to make sure which ever carrier you go with that your Primary Care Doctor takes that company. Also if you have been to a certain hospital that you are comfortable with that the carrier covers that hospital.
To sum that part up, 1. Have a list of you health care providers that you use. 2. Have a list of hospitals and medical facilities you deal with, make sure the company deals with them 3. I forgot medication providers. By this I mean if you have your prescriptions filled at a certain pharmacy, make sure they take you new Medicare Advantage Provider, deals with that pharmacy, plus many pharmicies give some medicines at "No Charge" for filling certain basic medcines. In my area Kroger Markets do this for a couple of my daily scripts.
Some companies that offer Medicare Advantage are Aetena, United, Humana, Blue Cross/ Blue Shielld. I know AARP you get a discount on memebership and price of coverage. Advantage does cost you per month but it is well worth it. I pay $125 a month that is deducted out of my Social Secuirty check. If your not taking a SS I'm not sure how that works. The companies will let you know. PLEASE SHOP AROUND!
Along with medicine coverage some have a co-pay or maximum amount of medicine over a certain time frame usually for a year!
My suggestion is sign up for one of the medication companies like GoodRx who I use. I have found soometimes that GoodRX is sometimes even cheaper than my insurance! Be Proactive and learn what you can about all of your medical help!
If I think of anything in the morning overnight I will answer you back! If you have any questions , please ask, if I know the answer or tell you where to check I will let you know!
LAST, MOST IMPORTANTLY, CONGRATULATIONS FOR BEING A SURVIVIVOR! YOU HAVE JOINED A GORUP OF PEOPLE WHO ARE FIGHTERS!
WE ARE A SPECIAL GROUP OF PEOPLE WHO HAVE BEEN THROUGH SOME OF THE HARDEST PARTS OF LIFE! IN MOST CASES WE ARE VERY GROUP OF COMAPSSIONATE GROUP OF PEOPLE WHO SHOW COMPASSION AND UNDERSTANDING OF OTHERS!
From, The Land of Enchantment!
Sundance(RB)

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@popeyegurl

Hello to Colleen and to all who share with me the frustration of dealing with chronic pain. If all I get is a bit of support from this forum, I will be happy. I HAVE gotten a bit more than that already by reading some of the stories on here. I am 64 years old and getting ready, on top of everything else, to deal with signing up for Medicare. I need to find someone to help me navigate that because of my healthcare needs. I live with chronic back, neck and knee pain that has gotten worse in the last few years. I also have rheumatoid arthritis and osteopenia. I have a wonderfully supportive husband but really worry that all of my ailments and lack of enthusiasm for doing things that we enjoy, are going to take a toll on our relationship. I have had to all but give up on things that I personally enjoy. Now with Covid complicating things, it seems like there is no end in sight. I still work full time and have a somewhat physically demanding job. But I need the exercise it provides as well as the income and great medical benefits. I got through laryngeal cancer in 2016 and this year I am 5 yrs clear of cancer! I am a fighter but I am getting older and tired. I am sick of treading to the pain specialists office monthly for my meds and hate needing those meds. I feel like one of the cattle in the paddock when I go there. I don’t feel that I have any control over that part of my life and am at their mercy. Waiting for hours to be seen for 5 minutes just to get a piece of paper feels degrading! Have had three back surgeries, one of which was a fusion. The levels above the fusion are causing issues so I am trying nerve ablation to ease the pain. Had my numbing trial today and it went well so I hope that it will give me some relief. My next steps in the future are either another fusion or trying nerve stim device in my back. I just want to be able to put it off until retirement. My hubby and I want to retire and go cruising on a sailboat until we can’t do it anymore. I worry that I may not realize our dream. That breaks my heart. If the pain issues get under control, then I can be free to sail off into the sunset! I can’t do that if I need to check in for scripts every month. So, sorry this is long, but my story, like so many others I feel sure, is long and complicated. Just being able to talk about it feels good. Thank you for having a venue where people like me can talk, get help finding answers and where we can all support each other.

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@popeyegurl
Hi, I totally understand how you feel about the future. I am my wife's caregiver. Her endless debilitating pain from neuropathy, chronic headaches and severe tinnitus have completely sidelined her for almost 2 years. I do think she has worried at various times about what effect her situation would have on me. I decided back when this all started in 2014 after chemo that I was with her 100% no matter what. I think by now she knows I am going nowhere, that she is my number one concern and always will be. It's a bummer sometimes what life dishes out to people, but it is what it is. It certainly helps to have a strong faith!

Regarding Connect, I'd like to suggest to you to do searches using the search window above regarding radio frequency nerve ablations and electronic nerve stimulators, etc. This site is brimming with folks who have had a variety of experiences with both, and you might gain some good insights. For example, it has come to light on these pages that many people who have stimulators put in go through a two week trial first and experience very positive results, but after the permanent one is installed, not so much. Lots of reports along those lines. So do make use of all that Connect has to offer. And I'd encourage you to check out the links at the bottom of the page about how to use the site to maximum effectiveness (such as "Getting started on Connect" and "About Connect"). Glad you are here! Best, Hank

Liked by Sundance(RB)

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@popeyegurl

Hello to Colleen and to all who share with me the frustration of dealing with chronic pain. If all I get is a bit of support from this forum, I will be happy. I HAVE gotten a bit more than that already by reading some of the stories on here. I am 64 years old and getting ready, on top of everything else, to deal with signing up for Medicare. I need to find someone to help me navigate that because of my healthcare needs. I live with chronic back, neck and knee pain that has gotten worse in the last few years. I also have rheumatoid arthritis and osteopenia. I have a wonderfully supportive husband but really worry that all of my ailments and lack of enthusiasm for doing things that we enjoy, are going to take a toll on our relationship. I have had to all but give up on things that I personally enjoy. Now with Covid complicating things, it seems like there is no end in sight. I still work full time and have a somewhat physically demanding job. But I need the exercise it provides as well as the income and great medical benefits. I got through laryngeal cancer in 2016 and this year I am 5 yrs clear of cancer! I am a fighter but I am getting older and tired. I am sick of treading to the pain specialists office monthly for my meds and hate needing those meds. I feel like one of the cattle in the paddock when I go there. I don’t feel that I have any control over that part of my life and am at their mercy. Waiting for hours to be seen for 5 minutes just to get a piece of paper feels degrading! Have had three back surgeries, one of which was a fusion. The levels above the fusion are causing issues so I am trying nerve ablation to ease the pain. Had my numbing trial today and it went well so I hope that it will give me some relief. My next steps in the future are either another fusion or trying nerve stim device in my back. I just want to be able to put it off until retirement. My hubby and I want to retire and go cruising on a sailboat until we can’t do it anymore. I worry that I may not realize our dream. That breaks my heart. If the pain issues get under control, then I can be free to sail off into the sunset! I can’t do that if I need to check in for scripts every month. So, sorry this is long, but my story, like so many others I feel sure, is long and complicated. Just being able to talk about it feels good. Thank you for having a venue where people like me can talk, get help finding answers and where we can all support each other.

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@popeyegurl Welcome to Mayo Clinic Connect. As you have found out, there is a lot to offer here, reading about different experiences that members choose to share.

If you are still working, and receiving health insurance benefits, even as you turn 65, there is no need to look for additional insurance. All you will need to do is to sign up for Medicare, part A only. Until you retire, you have your employer's health benefits to sustain you. Failure to sign up for Medicare part A may lead to penalties later. May I suggest you look for an insurance agent to help lead you through the maze, and if you have a county Area Agency on Aging, they may have an ombudsman available to guide you. Being informed and making the best choices for you can be overwhelming! I know, been there, done that!
Ginger

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Hi
My name is Hannah. I have autoimmune issues and also CFS. I try and mediatate for chronic pain, as well as heat and CBD…Nice meeting everyone!

Liked by Hank

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Hello, I am Anne. I suffer from pain that wakes me up at night. Pain mostly in my right hip and right leg. Years ago I had an attack of bursitis in this same hip. Just reading through a lot of posts and people that take Gabapentin. My Vet always prescribes Gaba for my dogs. To me it is an excuse to not give you real pain meds. Not that they would anyway. I am surprised to see how many have chronic pain. I hesitate to go to the doctor. It seems like they are not interested or just want to refer you out. Anyway good to be here and share.

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@annec2525

Hello, I am Anne. I suffer from pain that wakes me up at night. Pain mostly in my right hip and right leg. Years ago I had an attack of bursitis in this same hip. Just reading through a lot of posts and people that take Gabapentin. My Vet always prescribes Gaba for my dogs. To me it is an excuse to not give you real pain meds. Not that they would anyway. I am surprised to see how many have chronic pain. I hesitate to go to the doctor. It seems like they are not interested or just want to refer you out. Anyway good to be here and share.

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@annec2525 Welcome to Mayo Clinic Connect. As you can see, we share our journeys and experiences in the effort to support each other and show what has worked for us! May I ask you, what are you doing for your bursitis now? I am having the same problem in my left side, and dr is getting approval for an MRI. Getting decent sleep at night is something to hope for, isn't it?

Chronic pain is different for so many people. This is a safe place to share, and not be criticized [I hope!] for our choices.

How did you find Mayo Connect?
Ginger

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@annec2525

Hello, I am Anne. I suffer from pain that wakes me up at night. Pain mostly in my right hip and right leg. Years ago I had an attack of bursitis in this same hip. Just reading through a lot of posts and people that take Gabapentin. My Vet always prescribes Gaba for my dogs. To me it is an excuse to not give you real pain meds. Not that they would anyway. I am surprised to see how many have chronic pain. I hesitate to go to the doctor. It seems like they are not interested or just want to refer you out. Anyway good to be here and share.

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@annec2525 Id like to add my welcome Anne . I am going for a MRI tomorrow for rt hip pain and going into my leg . My rheumatologist ordered it . I hope it is only brusitis and nothing more . I use to use gaba but it did nothing for me . I was given it for neuropathy in my thighs as I have had 2 back fractures and my nerve are impacted by this. A friend just had a injection by a pain Dr and feels better this is not a cure but at least relieves you of pain. Have you given this a thought ? I see my pain Dr in March and will take my MRI to him . We are all pain warriors on here pain is so different for everyone. Take care

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@rarelybees2889

Hi
My name is Hannah. I have autoimmune issues and also CFS. I try and mediatate for chronic pain, as well as heat and CBD…Nice meeting everyone!

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Hi Hannah! Welcome to our group! I have a variety of chronic pain issues and try many different things. I try to walk daily(even with the freezing temps, although for awhile I’m going to have to walk inside because I get frostbite when it’s below zero); at home physical therapy exercises; stationary recumbent bike riding; gluten free diet; ice; heat; only sitting about an hour at a time-alternating between slow walking around the house or laying-dependent on my level of fatigue; reading; keeping in contact with others (phone, zoom, or messaging); and good, quality sleep (medication assisted-due to a sleep disorder). Nice meeting you😊

Liked by lioness

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@lioness

@annec2525 Id like to add my welcome Anne . I am going for a MRI tomorrow for rt hip pain and going into my leg . My rheumatologist ordered it . I hope it is only brusitis and nothing more . I use to use gaba but it did nothing for me . I was given it for neuropathy in my thighs as I have had 2 back fractures and my nerve are impacted by this. A friend just had a injection by a pain Dr and feels better this is not a cure but at least relieves you of pain. Have you given this a thought ? I see my pain Dr in March and will take my MRI to him . We are all pain warriors on here pain is so different for everyone. Take care

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Gosh I hate going to the doctor but seeing a pain specialist makes sense. I keep trying things like exercise, tumeric and natural remedies but it is not working. Sometimes I wake up and say oh no, please not again. You had 2 back fractures? Oh my gosh, that is really scary. Let me know what you find out, we sound very similar. Good Luck!

Liked by lioness

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@gingerw

@annec2525 Welcome to Mayo Clinic Connect. As you can see, we share our journeys and experiences in the effort to support each other and show what has worked for us! May I ask you, what are you doing for your bursitis now? I am having the same problem in my left side, and dr is getting approval for an MRI. Getting decent sleep at night is something to hope for, isn't it?

Chronic pain is different for so many people. This is a safe place to share, and not be criticized [I hope!] for our choices.

How did you find Mayo Connect?
Ginger

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Mayo came up in my FB feed. I am so glad I found this. I have some 800 mg ibuprophen I take when it wakes me up. One time I ended up in the ER with a muscle spasm so severe in my neck I was crying in pain. They gave me ibuprophen and valuim in an IV and to my amazement it worked. So my general practice doctor allows me to keep a few valium around just in case I have a severe pain attack. I have used the ibuprophen with the valium and it does work. Getting a prescription for valium is almost as hard as getting pain meds.
Nothing worse than waking up in pain. Well, except not waking up at all. LOL

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@migizii

Hi Hannah! Welcome to our group! I have a variety of chronic pain issues and try many different things. I try to walk daily(even with the freezing temps, although for awhile I’m going to have to walk inside because I get frostbite when it’s below zero); at home physical therapy exercises; stationary recumbent bike riding; gluten free diet; ice; heat; only sitting about an hour at a time-alternating between slow walking around the house or laying-dependent on my level of fatigue; reading; keeping in contact with others (phone, zoom, or messaging); and good, quality sleep (medication assisted-due to a sleep disorder). Nice meeting you😊

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What medication do you take for sleep if you don't mind me asking? I think all the things you do make sense and probably help.

Liked by lioness

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I had a toenail removel about 2 mths ago now that is still very painful. I was told that the procedure done to stop the toenail from growing back has caused a chemical burn. I have serious burning sensations of pain shooting from my cuticle and nothing so far seems to help ease the pain. What can I do?

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