Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Volunteer Mentor @sandytoes14, Aug 19, 2019

Usually I am not one to share much of my personal story but here goes…I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing…I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.

@lioness

@parus So sorry you have been under the weather with this pain and missing your grandsons Christmas program is the worse I know how you feel. Blessings to you parus

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I left you a post—-went down below!

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@trishj46

Lioness——where did you book mark it??? Do you go to google to find name of site? I am on now again by accident. I never got notified of your post. Thanks! but I am really confused!

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@trishj46 Go to Mayo clinic connect register or login you,ll be able to pick the groups you want to follow , click on them when someone post from those groups you should get them To bookmark in the first step I have a bookmark that I clicked on ,hope this helps When I go to my mail Mayo pops up then .Hope this helps

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@sandytoes27 Hi Sandy just received this new naturel med Conoldine It's a dropperful under tongue I haven't been on it long enough to give my opinion yet .I was in pain and just took 1dropperful not in as much now here's the address if you want to look it up. Pharmorigins.com I hope the lady @lorirenee1 reads this I'm so sorry your in so much pain Take care Linda

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@karihammel

@sandytoes14 – I am so sorry for your loss as well. My husband has an aunt who had many miscarriages and they never did have any children. I think adoption was just not something they were interested in. I think it's an extra special way to give AND receive a wonderful miracle a life they wouldn't necessarily have otherwise. Congratulations on keeping the weight off. I seriously hope I keep mine off! I've been about the same weight now for almost a year so I'm hoping this is where I stay. Happy holidays to you!

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@karihammel @sandytoes14 – I’m so impressed with how much weight both of you lost!! Fantastic! I put on a lot of weight with autoimmune GI disease plus being on a lot of steroids. 18 months ago I decided to lose weight to prevent diabetes to get worse. I lost 45 lbs and feel much better – plus my sleep apnea disappeared.
I have had fibromyalgia on and off for years too- stress definitely triggers it. Waiting for more daylight and warm air.

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@astaingegerdm Congratulations on losing the weight! My husband has type 2 diabetes and Sleep apnea and has used a CPAP machine for years. He walks about 4 miles 4 days a week, this after 2 serious cervical spine laminectomy. Before the first surgery he could have been paralyzed if he were in an accident or fell. The poor guy had a spinal cord compression.
Stress sure does a number on fibromyalgia. I hope you are warm and happy.

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@lioness

@sandytoes27 Hi Sandy just received this new naturel med Conoldine It's a dropperful under tongue I haven't been on it long enough to give my opinion yet .I was in pain and just took 1dropperful not in as much now here's the address if you want to look it up. Pharmorigins.com I hope the lady @lorirenee1 reads this I'm so sorry your in so much pain Take care Linda

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@lioness Hi Linda, I finally received Conolidine, and also cannot judge it yet. I took it once yesterday, and I thought my pain was better, and I took it today, and the pain was better for about 2 hours. I am going to wait a week or so, and write a general post to everyone about it. So far, really nor sure. Hope it starts consistently working for both of us. Lori R.

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@lorirenee1

@lioness Hi Linda, I finally received Conolidine, and also cannot judge it yet. I took it once yesterday, and I thought my pain was better, and I took it today, and the pain was better for about 2 hours. I am going to wait a week or so, and write a general post to everyone about it. So far, really nor sure. Hope it starts consistently working for both of us. Lori R.

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@lorirenee1 Same here In a week we should know if it's helping

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@trishj46

I left you a post—-went down below!

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Hello Pat @trishj46, Thank you for the private message. I will try and answer it here in reply to your last post in the "Feeling at my wits end with Chronic Pain and Fibromyalgia" discussion so hopefully it makes more sense to you.

You mentioned in your private message that you are not receiving any responses from people. I think the problem maybe that they are not seeing your posts to them because you are not addressing your post to a specific member using their member name, for example to send a question or response that you want me to send you would use @johnbishop to make sure I receive an email notification for your post and can respond.

I think your last post was to @lioness about how she bookmarked the Connect website. So I will try to answer your question again. You may want to write the steps down or just follow the links to see if you are able to bookmark the Connect site.

1. Go to the Connect website – https://connect.mayoclinic.org/
2. Depending on which web browser program you are using on your computer, follow the instructions here:
https://www.computerhope.com/issues/ch000858.htm
Once you have saved a bookmark or favorite (depending on your web browser program), you can easily click on it to return to the Connect website.

I think part of your frustration is that you are not receiving responses and I can understand that and know it's even worse when you are in pain. Are you able to tell me how you read your emails? What type of devices are you using – a computer, a cellphone or tablet? A computer is by far the easiest but I'm sure we can help you if we know the type of device you are using. There are other members on Connect who i'm sure use all of the different types of devices.

Hope this helps….

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@johnbishop

Hello Pat @trishj46, Thank you for the private message. I will try and answer it here in reply to your last post in the "Feeling at my wits end with Chronic Pain and Fibromyalgia" discussion so hopefully it makes more sense to you.

You mentioned in your private message that you are not receiving any responses from people. I think the problem maybe that they are not seeing your posts to them because you are not addressing your post to a specific member using their member name, for example to send a question or response that you want me to send you would use @johnbishop to make sure I receive an email notification for your post and can respond.

I think your last post was to @lioness about how she bookmarked the Connect website. So I will try to answer your question again. You may want to write the steps down or just follow the links to see if you are able to bookmark the Connect site.

1. Go to the Connect website – https://connect.mayoclinic.org/
2. Depending on which web browser program you are using on your computer, follow the instructions here:
https://www.computerhope.com/issues/ch000858.htm
Once you have saved a bookmark or favorite (depending on your web browser program), you can easily click on it to return to the Connect website.

I think part of your frustration is that you are not receiving responses and I can understand that and know it's even worse when you are in pain. Are you able to tell me how you read your emails? What type of devices are you using – a computer, a cellphone or tablet? A computer is by far the easiest but I'm sure we can help you if we know the type of device you are using. There are other members on Connect who i'm sure use all of the different types of devices.

Hope this helps….

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@johnbishop Although your post was for @trishj46, I have no doubt you helped others , too! Thank you for assisting those of us who are not technically inclined. I certainly count myself in that group! Back in the late 60s-early 70s, the Army gave high schoolers a battery of interest/proclivity tests. Apparently I scored really high in technical, and they wanted me to join up with them. They couldn't draft me. My father was so disappointed when I said "no" to their plans to put me in computers.
Ginger

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@gingerw,and @john Bishop, thank
you for discussing this very important subject. I was born in the early fifties. Technology is not my strong suit.

I have written so many posts only to have them disappear. I have had difficulties with finding certain emails, using my phone. Laptop, no problem. But the laptop is not up and running right now.

I have cataracts. Letters jumble around and disappear.

I can't always get to my 14 year old IT person for help. It's frustrating. But I am certain it will get better.

You're never too old to learn new things. It might take longer. You might have to swallow your pride and ask for help. I do it all the time.

The point is, we are here to help each other And I thank all of you for the help you have given me when I was at my "wits end."

Love and light ,
Mamacita Jane

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So sorry your in pain I am praying for u

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@mamacita Hello there. I am not very tech savvy either. I am constantly misplacing my cell phone, can't keep things straight. I can see where technology is advancement and also where it is replacing people and turning the human race into tech zombies. Everywhere I go others are text-text-texting on their phones, yak-yak-yaking on their phones, stores playing network music… Enough to drive me back to my woman's cave and it does.
A line I use when registering for blood work, etc, and directed to use the computers lining the walls is, "I'm sorry I am technologically impaired". I take on the appearance of a lost individual and being pathetic-it works!!!! When I am stressed nothing works and it takes me longer to register.
I miss getting Christmas cards and all the simple things that made life special and worth living. Succumbing to a machine is dehumanizing which is what it has been designed to do-something about equality for all.
Dismounting soapbox and keeping you and yours in my thoughts.

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@johnbishop Thank you for helping again. I hope @trishj46 can benefit from your instructions.
@parus I too enjoy sending and receiving Christmas cards. I’m feeling that I’m in a better place mentally and am in the midst of writing out cards.I miss looking at beautiful holiday displays in store windows. After that, we’d stand in line to see Santa, get hot chocolate and sing carols. Has ‘Scamp’ come over for playtime?
@mamacita Im glad you have a Tech Helper (although I understand how “helpful” a 14 yr old can be.
Blessings to us all

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I had to share a couple photos of my Christmas cactus. I just noticed that it is filled with buds and has quite a few blossoms. Happy Tuesday. My your heart be blessed. Be kind, it costs nothing but can be priceless.

81E664A1-AA3F-4821-BED9-BFB39DE4CF99

6348F4D0-3765-4F09-B593-84EF32458AE6

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@parus

@mamacita Hello there. I am not very tech savvy either. I am constantly misplacing my cell phone, can't keep things straight. I can see where technology is advancement and also where it is replacing people and turning the human race into tech zombies. Everywhere I go others are text-text-texting on their phones, yak-yak-yaking on their phones, stores playing network music… Enough to drive me back to my woman's cave and it does.
A line I use when registering for blood work, etc, and directed to use the computers lining the walls is, "I'm sorry I am technologically impaired". I take on the appearance of a lost individual and being pathetic-it works!!!! When I am stressed nothing works and it takes me longer to register.
I miss getting Christmas cards and all the simple things that made life special and worth living. Succumbing to a machine is dehumanizing which is what it has been designed to do-something about equality for all.
Dismounting soapbox and keeping you and yours in my thoughts.

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Good morning,@parus. Yes, we have a rule at my house. Less technology and more real life interactions with people.

We had two visitors yesterday. I was so thrilled to have both of them. One stayed for almost two hours. The other, maybe thirty minutes.

People work, live far away, and some just aren't interested. I know that I am not everyone's cup of tea, and I am fine with that.

As has been mentioned on other discussion sites, we cannot change other's behaviors toward us. Good thing we can change our response to others.

Let's just do the things that bring us joy. There are so many wonderful things left in this world that do not involve technology .
Your words are like a breath of fresh air. Hope you have a great week.

Mamacita Jane

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