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 Why are you cautioning me? Isn't this a free and open forum? Dependence is a synonym for addiction. I quote from the Mayo Clinic website: "Some drugs, such as opioid painkillers, have a higher risk and cause addiction more quickly than others." (under drug addiction) The pain meds I'm on do not leave me pain-free in the least. What helps me is keeping my mind busy with positive activities and thoughts, daily exercise, having a pet and eating well.

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@mwcates

@ckeys I'm new to this group. I hope you won't mind if I jump in. In the pain department, I have osteoarthritis and fibromyalgia syndrome.

You can most certainly become addicted to opiates that are prescribed for you.

About 15 years ago, I was prescribed two of them to take three times a day. Every night I had nightmares. I woke up in a pool of sweat. I could barely get down the stairs without falling. Over the course of six months, I weaned myself off of the opiates and never regretted it.

Opiates are constipating, so anyone with IBS or more serious intestinal problems should avoid them. A couple of years ago, my colon burst and I had a colostomy that was later reversed. Being on opiates was harmful to my colon.

I now take all the prescription pain medication that isn't narcotic. And I would like to ease off of those. I find that when my mind is fully engaged in an endeavor -- painting, writing, reading, etc. -- I don't feel the pain at all. So I stay busy.

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@mwcates you are so right I have fibromyalgia and osteoarthritis I find when my mind is occupied I don't think of my ailments nor pain Exercise is very helpful with this as well as eating good food,hobbies I liked your post

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@lioness

@mwcates you are so right I have fibromyalgia and osteoarthritis I find when my mind is occupied I don't think of my ailments nor pain Exercise is very helpful with this as well as eating good food,hobbies I liked your post

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@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

@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 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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@taterjoy

HI @clownscrytoo. I am sorry you are suffering with a terrible case of fibro. My Mom had a bad case before it was an official "diagnosis" in the medical literature. She visited Mayo (Rochester) in the later 1970's and was diagnosed with Fibro. She took small doses of Elavil (10mg) daily for years, which helped her tremendously. She was also told to avoid foods in the nightshade family, which helped. They also recommended weight loss--a diet with lots of veggies, lean proteins including dried beans (lots of complex fiber) helped her the most.

She has learned that a firm seat is much better for her than a soft, cushy seat. She made a wedge-shaped cushion that is VERY firm to use in the car and when out of the house. She also feels that her pain is much reduced when her sleep is better quality. When her fibro flares, she can only lie down or stand (not sit). I pray that a cure will be found, and that you will experience many more "good" days ahead.

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@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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@mwcates

@ckeys Why are you cautioning me? Isn't this a free and open forum? Dependence is a synonym for addiction. I quote from the Mayo Clinic website: "Some drugs, such as opioid painkillers, have a higher risk and cause addiction more quickly than others." (under drug addiction) The pain meds I'm on do not leave me pain-free in the least. What helps me is keeping my mind busy with positive activities and thoughts, daily exercise, having a pet and eating well.

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@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

@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 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

@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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@mwcates I know how you feel I was diagnosed in 1992 by my pressure points and conversation so I,ve had to do trial and error I went to groupy one thing helped a little was isometric exercises Since then Ive found ice helps Tens unit and m ke you said is keeping busy with hobbies .Is there anything that helps you ?

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@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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Hi @mwcates, the National Institute on Drug Abuse is part of the National Institutes of Health, U.S. Department of health & Human Services https://www.nih.gov/ It's a great resource of evidence-based information. Along with Mayo Clinic and CDC and other reputable sites, NIH is one of my go-to websites. Happy to have introduced you to it.

I commend you for focusing your pain reduction on painting, writing, reading, etc. We have quite a few artists here on Connect. Have you seen this discussion?

- Art for Healing https://connect.mayoclinic.org/discussion/art-for-healing/

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@mwcates

@ckeys Why are you cautioning me? Isn't this a free and open forum? Dependence is a synonym for addiction. I quote from the Mayo Clinic website: "Some drugs, such as opioid painkillers, have a higher risk and cause addiction more quickly than others." (under drug addiction) The pain meds I'm on do not leave me pain-free in the least. What helps me is keeping my mind busy with positive activities and thoughts, daily exercise, having a pet and eating well.

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@mwcates I was trying to be diplomatic, and considerate of others on this site who uses pain medications that contain opiates. I guess you’re willing to just roll over us all and define us as addicts???

I totally disagree with that definition. And pardon my frankness, but you seem uninformed. Perhaps you should seek a site looking to define people who use pain medications as addicts. This is the site about supporting people suffering from chronic pain.

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