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Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

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

ckeys | @ckeys | Nov 29, 2018
In reply to @grandmar "Hi all! I wanted to share an article with you. https://www.healthline.com/health-news/america-is-losing-the-war-on-chronic-pain#29 Among other things, they discuss..." + (show)
@grandmar

Hi all!
I wanted to share an article with you. https://www.healthline.com/health-news/america-is-losing-the-war-on-chronic-pain#29

Among other things, they discuss the reactions gotten by health care professionals when asking for more pain meds.

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@grandmar BTW... I know I posted the link to the article, but I wanted to thank you for bringing it to light as it was super informative.

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1 reply
ckeys | @ckeys | Nov 29, 2018
In reply to @mwcates "@colleenyoung I am not familiar with the National Institute on Drug Abuse, so I don't know..." + (show)
@mwcates

@colleenyoung I am not familiar with the National Institute on Drug Abuse, so I don't know how much credence to give to it. If you want to make a distinction between dependence and addiction, that's fine. True, morphine is not the same as heroine. Is that your point? You can write your congresspeople if you want. This is my first day and I'm quickly beginning to think this is a waste of my time.

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@mwcates So You make a post about us all being addicted if we use pain medication, yet you’re unwilling to consider looking at truly a accredited site/resource that might contradict your personal opinion? Perhaps you were in the wrong site

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ckeys | @ckeys | Nov 29, 2018
In reply to @mwcates "@taterjoy Unfortunately, a cure can't be found until medical researchers know what the disease underlying fibromyalgia..." + (show)
@mwcates

@taterjoy Unfortunately, a cure can't be found until medical researchers know what the disease underlying fibromyalgia syndrome is. Fibromyalgia is not a disease. Where we are now: "Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals." (Mayo Clinic website under Fibromyalgia) There's more about neurotransmitters that you can read.

I'm up in years. During my last appointment, I discussed with my primary-care physician that, by the time researchers discover what the disease is and drugs are developed to treat it, I'll already be gone from the earth. On the bright side, some of you youngsters may benefit from the research. But for now we have to find ways to cope and even make ourselves feel better. Doctors can only manage the symptoms with medication.

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@tatterjoy, @mwcates “But for now we have to find ways to cope and even make ourselves feel better.” SOOOO true, And that’s very individual based on your pain, your interest, your ability to cope. Distraction is always the first and best way to manage pain. But it is hard to be distracted when we are resting, reading, trying to watch a movie, trying to sleep. For that thankfully there are medications that can help some of us.

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ckeys | @ckeys | Nov 29, 2018
In reply to @colleenyoung "@mwcates, you are quite right that Mayo Clinic Connect is an open and free forum. @ckeys..." + (show)
@colleenyoung

@mwcates, you are quite right that Mayo Clinic Connect is an open and free forum. @ckeys brings up an often overlooked distinction between addiction and dependence. Many people use the terms interchangeably. I found this relatively simple explanation on NIH's website
- Addiction vs dependence https://www.drugabuse.gov/publications/teaching-packets/neurobiology-drug-addiction/section-iii-action-heroin-morphine/10-addiction-vs-dependence

I paraphrase:
"..it is possible to be dependent on an opioid, without being addicted to it. (Although, if one is addicted, they are most likely dependent as well.) This is especially true for people being treated chronically with a drug like morphine, for example, pain associated with terminal cancer. They may be dependent - if the drug is stopped, they suffer a withdrawal syndrome. But, they are not compulsive users of the morphine, and they are not addicted. ..."

You're so right that pain meds rarely eliminate pain. Keeping busy and finding things to occupy the mind are the topic of this discussion on Connect:
- What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/

I bet you have some great things to contribute to that discussion.

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@colleenyoung thank you for helping distinguish addiction from dependence. And very true, distraction helps. But sometimes you just want to read a book, flip zero magazine, and watch TV… Those distractions often times aren’t enough to keep focus from the pain. Personally I need pain medications to be able to sleep comfortably; With out them I wake up frequently, sleep poorly and that makes my pain much worse… Distraction or nine. @mwcates I encourage you to be more receptive and understanding to those who can’t simply distract their pain away. Not all of us are like you. An open forum means that you can encourage and/or ask people to consider. If that’s too much for you to handle I’m so sorry as everybody’s opinion is welcome here

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grandmaR | @grandmar | Nov 29, 2018
In reply to @ckeys "@grandmar BTW... I know I posted the link to the article, but I wanted to thank..." + (show)
@ckeys

@grandmar BTW... I know I posted the link to the article, but I wanted to thank you for bringing it to light as it was super informative.

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@ckeys
You are more than welcome!
Ronnie (GRANDMAr)

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kellye5 | @kellye5 | Nov 29, 2018

While I appreciate an open forum, this dialogue made me feel more anxious which leads to more pain. Just do you without judgement. Peace.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 29, 2018

Hi all, please take note of guideline number 2 in Connect's Community Guidelines https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines

2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Personal attacks against members are not acceptable. Such posts will be removed.

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2 replies
Parus | @parus | Nov 29, 2018
In reply to @mwcates "@lioness Thanks for your reply. There's only so much medication can do. Focusing on the pain..." + (show)
@mwcates

@lioness Thanks for your reply. There's only so much medication can do. Focusing on the pain hurts and frustrates. I'm not saying I'm not in pain. I am. I'm frustrated, too. But I try not to focus on that. Simply finding your safe diet (food and drink you can have without any adverse reactions) and the right time to eat -- these are individual and must be found through trial and error -- can make a big difference. I have my cat in my lap and she feels so good. That eases my pain, as I focus on her weight and warmth. Interests and hobbies take you out of yourself, and that includes out of your pain. When I'm having trouble controlling my hand enough to paint and start feeling sorry for myself, I think of that photo of the famous Impressionist painter Renoir, in his older years, with brushes strapped to his arms because arthritis prevented his painting. I used to look at it and feel sorry for him. Now I admire him in that photo and wonder if his pain lessened or even disappeared as he focused on his great love, painting.

Edited to add: With the brushes strapped to his arms, Renoir could paint, despite the arthritis in his hands.

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@mwcates He most certainly did!!! I have found when my mind is busy with other things I am distracted from the pain and discomfort. Distraction is my most valuable tool. Thank you for sharing and encouraging others.

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Parus | @parus | Nov 29, 2018
In reply to @lioness "@mwcates I know that painting I admire those who paint with there mouth have no hands..." + (show)
@lioness

@mwcates I know that painting I admire those who paint with there mouth have no hands or arms . I try to by there cards I'm in Aw of them I dabble in art but mine isnt very good so I do Adult Coloring I have enough color combination to know what looks good. For my fibromyalgia I take Fibro-Malic from Vitacost there,s no drugs in it I am out of pain except for O.A. Merry Christmas to you

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@lioness Placed an order this morning. Thank you for helping me navigate the process...Was so easy. Yes, overcoming a fear of something can be the largest obstacle. Adult coloring is helping many. I do so occasionally. I find it to be a type of meditation. Also find it hard to put down.. Excited about receiving the shipment. Have a nice day. Planning to break camp at some point today.

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Parus | @parus | Nov 29, 2018
In reply to @basslakeview "Lioness, I recommend anyone who has been dx'd with FM and CF be retested for Lyme..." + (show)
@basslakeview

Lioness,
I recommend anyone who has been dx'd with FM and CF be retested for Lyme Disease & Rocky Mountain Spotted Fever by a lab equipped to do it properly. There aren't a lot around who can do it correctly. Mine was done by LabCorp.

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@basslakeview If I do not keep my immune system healthy the Lyme Disease I had in 1983 rears it head and my legs burn like fire. These bugs can stay in our system.

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