1. < Fibromyalgia

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.

Parus | @parus | Jan 31, 2018
In reply to @oregongirl "I know as my legs can only take so much. My kids are on me constantly..." + (show)
@oregongirl

I know as my legs can only take so much. My kids are on me constantly about walking. They brag about my DIL's mother and how she walks miles everyday. It is horrible to be compared to a women who does not have RA and Fibro We don't bleed so we are not ill? Its so hard to get people to understand that you are not faking an illness. I stopped taking my son to my appts. He interfers with my conversation with the doctor.

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@lynneb2110 Thanks for the info. I also have severe TMJ which was treated by a specialist. My diet has been mostly reduced to green smoothies to get my greens. Also avoid gluten/sugar and dairy as these cause inflammation for me. Thankful for things like almond and coconut w/o sugar. Once one goes off sugar for a long period of time it tastes bitter and fruit tastes so much sweeter. I do not miss the things I avoid other than tomatoes and peppers. I do not miss more pain though.

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lioness | @lioness | Jan 31, 2018
In reply to @oregongirl "I know as my legs can only take so much. My kids are on me constantly..." + (show)
@oregongirl

I know as my legs can only take so much. My kids are on me constantly about walking. They brag about my DIL's mother and how she walks miles everyday. It is horrible to be compared to a women who does not have RA and Fibro We don't bleed so we are not ill? Its so hard to get people to understand that you are not faking an illness. I stopped taking my son to my appts. He interfers with my conversation with the doctor.

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Glad to hear this helps ,just starting it.

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lioness | @lioness | Jan 31, 2018
In reply to @oregongirl "I know as my legs can only take so much. My kids are on me constantly..." + (show)
@oregongirl

I know as my legs can only take so much. My kids are on me constantly about walking. They brag about my DIL's mother and how she walks miles everyday. It is horrible to be compared to a women who does not have RA and Fibro We don't bleed so we are not ill? Its so hard to get people to understand that you are not faking an illness. I stopped taking my son to my appts. He interfers with my conversation with the doctor.

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Just went and lowded
up yesterday on veggies

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Jen, Alumna Mentor | @sandytoes14 | Jan 31, 2018

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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38 replies
Parus | @parus | Jan 31, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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Well, I am not alone.

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LynneB | @lynneb2110 | Jan 31, 2018
In reply to @oregongirl "Parus, I have RA and I was also diagnosed with Fibro. I am presently see my..." + (show)
@oregongirl

Parus, I have RA and I was also diagnosed with Fibro. I am presently see my doctors at the University of Texas Medical
center My doctor said I do not have Fibro I never thought to ask her - how do you know that? What is it they test to show that you have Fibro. I thought my RA had calmed down after 7 weeks of Methotrexate. But, I was SO Sick. I could not even eat. Everything came up. Even Liquid. So now I am on the Shots once a week. I start my Infusions next week. I am nervous about that Never having done the Infusions andI don't know what to expect. I was feeling so good and thought I had gotten the med into my body and then WALLA, pain came back. Today I have a headache. I feel so guilty as I cannot even clean the house. I usually do a bit here and there for about 15 minutes. I guess I should be thankful. I am sure there are many RA patients who cannot get up at all. Parus, I guess this is our life as long as we live.

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@oregongirl, You could always call the doc’s office and ask how they know you don’t have fibromyalgia. There’s not a test, except one that I just learned is kind of questionable.

Is it the same pain as your RA pain? I just posted a new discussion last night about how Celebrex, which I just started 5 days ago, has remarkable effects on my fibro pain, including headache.

Also, @sandytoes14, and @parus, in that post I mentioned a company that is setting up for phase III trials for a combo of Celebrex and Famvir, using the theory (strongly supported, if I read this accurately) that the cold sore virus HSV-1 may well be responsible for all the disparate symptoms and ailments in this syndrome, including the wretched fibro fog.

I recommend anyone who is interested watch the short video on the top of their home page on “the science behind...” for explanation of how that may work:
http://innovativemedconcepts.com/index.html
I give a little more detail in that post, and there are contributions for other write-ups on the science, including an NIH synopsis of that study.

Xxoo

REPLY
LynneB | @lynneb2110 | Jan 31, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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I do exactly the same, @sandytoes, right down to the mid-sentence thing. I seem to have lost my ability to retrieve words I’m looking for.

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Jen, Alumna Mentor | @sandytoes14 | Jan 31, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

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@lynneb2110 If I had a nickel for every time I lost my words I'd be rich!

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lioness | @lioness | Jan 31, 2018
In reply to @parus "All I know to do is keep trudging on. Some days are better than others. Thankful..." + (show)
@parus

All I know to do is keep trudging on. Some days are better than others. Thankful I can still do some art work. Joined some others for pizza Wednesday evening. I had a good time and ate some pizza which resulted in a flare with pain because anything in the Nightshade family does this. Each day I feel a little better. Missing out on things and not having any kind of social life has been difficult. Still good to see some people I had not seen in a long time. The neuropathy is very bad. It will improve with time. Having fibro and other problems can make for a lonely existence. Went to the grocery in search of smiling faces. I found some 🙂

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Hi oregongirl,just go and listen to your rheumatologist then when you get treated with the shot Humira I think it is ,when your family sees how much better you are ,then they will have to believe you.we all have to take our diseases by the ,bull of the horn

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lioness | @lioness | Jan 31, 2018
In reply to @sandytoes14 "I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions...." + (show)
@sandytoes14

I was diagnosed in 2012 with Fibro. Over the years I have been on different prescriptions. For a while now I have been taking 60 mg Cymbalta and 150 mg Lyrica. It works well to help with most of the pain but of course I have flare ups, especially when the weather turns. Lately I have been suffering from the dreaded Fibro Fog. It gets so bad that I want to cry. I get frustrated when I talk and can't think of what I want to say. Sometimes I even lose my train of thought mid sentence. I don't know how to describe the feeling other than my thoughts are no longer clear but like I have stepped into a cloud. A few years ago I had a complete neurological workup. The only thing that was shown were tremors.
Do you feel like this? What do you do when this happens?

Jump to this post

I find I can't retrieve the word I want ,it makes me so mad since I've gotten older it's getting worse .It must be a part of fibromyalgia ,dreaded dis-ese

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