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.

I watched a video all about fibro and just knowing the stuff they talked about and understanding it helped me to cope. It is on Youtube, Title: Fibromyalgia: Cutting through the BS. I think it is right on.

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@loretta2

I watched a video all about fibro and just knowing the stuff they talked about and understanding it helped me to cope. It is on Youtube, Title: Fibromyalgia: Cutting through the BS. I think it is right on.

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Hi @loretta2, welcome to Mayo Clinic Connect. How long have you been living with fibromyalgia? What helps you cope with flares?

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@parus

Citrate and malate work the best for me. I know I can tell when I forget to take thus.

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Hi @parus

When you take the Citrate and Malate are they combined in one tablet or do you take them separately?

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I'm so sorry for your experience! I have Fibromyalgia and I haven't had good success with anything I have tried. I have read that everyone responds differently, though. I have tried a lot of different prescription medications that are fibromyalgia indicated, but none of them helped. I get most of my pain relief from prescription pain medication. It is not ideal, but in my case, it is what has been the most helpful. I hope you find a good doctor and some pain relief!

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Hi All!
I've suffered from Fibromyalgia before most doctors ever heard of it.
Every doctor wanted to start me on medicine to help me sleep since that is the healing period.
I refused because I did want to become dependent on sleeping pills.
After years of suffering and nothing helping, I agreed to the medicine.
It was actually an antidepressant used in a very low dosage to help me get into a deep sleep.
It worked.
I also started exercising.
My exercise, at the beginning started as walking around the development we lived in.
Halfway through, my hubby would have to drag me back home.
Eventually, I was able to walk the entire course by myself.
I joined Weight Watchers and started to use exercise equipment in the gym every morning and continued to walk every evening.
Within weeks, I felt so much better.
Other than being sensitive to touch at the tender points, I have no problems anymore.
Good luck to you all!!!

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Wow, I see there has been a fair bit of activity in this discussion since @clownscrytoo posted it back in 2016. I am my wife Linda's caregiver and advocate and do all of our online research and interactions. She was diagnosed about 1990. We had never heard of fibromyalgia before that time and neither had anyone else that we talked to. I did find out a bit later that my boss's boss had it and he and Linda and I talked about it when we happened to run into him one day. I remember him saying that he had been dealing with it for quite a while. He said it was important to keep moving regardless of whether you felt like it or not. He said the he took hot baths often and that they helped a lot. Since then Linda has taken hot baths with Dr. Teal's epsom salts and that has always helped her. She also tries to keep moving. But not TOO much. If she overdoes it on exercise she really pays for it, usually for the subsequent one or two days. But she has always been able to cope. It was only after chemo and her peripheral neuropathy came along that both of our lives changed for the worse.

Everyone experiences things differently and deals with things differently. Fibro for Linda always seemed like something that could be to some extent controlled. As long as she didn't overdo she was mostly okay and functional. And if she did overdo the effects of the fibro were limited to a fixed timeframe. But not PN. It has been the mystery that just keeps on giving. Pain that is. Best, Hank

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@jesfactsmon You are to be commended for being supportive. I refer to fibro as the gift that keeps on giving. Neuropathy is a tough one. I also refer to fibro as a grab bag. It makes life a challenge. Many are critical of those of us with fibro and I have found I stay to myself more and seldom mention the fibro as the eyeroll thing is too painful. In some ways it is much better not trying to put on a brave face. Can't do it is well these days. The cold doesn't help either.
Be sure to take care of yourself too.

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@hopeful33250

Hi @parus

When you take the Citrate and Malate are they combined in one tablet or do you take them separately?

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@hopeful33250 Hello there my cyber friend. It is in one tablet along with D3 and calcium. I need to stop by more often. Just lacking in energy which I think is due to dealing with chronic pain. Who knows? I just know to mostly keep my mouth shut about pain. Is what it is. We are a tough lot whether others notice it or not.

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@parus

@jesfactsmon You are to be commended for being supportive. I refer to fibro as the gift that keeps on giving. Neuropathy is a tough one. I also refer to fibro as a grab bag. It makes life a challenge. Many are critical of those of us with fibro and I have found I stay to myself more and seldom mention the fibro as the eyeroll thing is too painful. In some ways it is much better not trying to put on a brave face. Can't do it is well these days. The cold doesn't help either.
Be sure to take care of yourself too.

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@Parus
Thanks. At least speaking about fibro seems to have become a lot more acceptable and more people have heard of it. When I first heard Linda in 1990 say that the doctor told her she had fibromyalgia I said "What the heck is THAT?" It was so weird sounding. Now you hear it bandied around more than back then.

So Parus, do you have both fibro AND neuropathy as well? Seems like most people on Connect have multiple things wrong with them, like Linda. Few have just one thing. One more (teeny bit personal) question. Is your Connect photo meant as a joke about covid? Just wondering. Best, Hank

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@jesfactsmon

@Parus
Thanks. At least speaking about fibro seems to have become a lot more acceptable and more people have heard of it. When I first heard Linda in 1990 say that the doctor told her she had fibromyalgia I said "What the heck is THAT?" It was so weird sounding. Now you hear it bandied around more than back then.

So Parus, do you have both fibro AND neuropathy as well? Seems like most people on Connect have multiple things wrong with them, like Linda. Few have just one thing. One more (teeny bit personal) question. Is your Connect photo meant as a joke about covid? Just wondering. Best, Hank

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@jesfactsmon Yes, I have multiple issues. Fibro was the 1st diagnosed in the physical realm. Spine issues. Seems one thing flaring up causes a chain reaction. The profile photo is more about how we all are asked to present these. days. I in no way see COVID19 as a joke. This was in the beginning when masks were unavailable. Mayhap it is time for me to update profile photo.

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