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.

Texas Freedom | @oregongirl | Jan 25, 2018
In reply to @taterjoy "HI @clownscrytoo. I am sorry you are suffering with a terrible case of fibro. My Mom..." + (show)
@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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wow, I wondered what was making me gain weight when I hardly eat. I take Amitryptaline at night to help me sleep. It works great. But, I am sure it is addictive.

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Texas Freedom | @oregongirl | Jan 25, 2018

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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28 replies
lioness | @lioness | Jan 25, 2018
In reply to @taterjoy "HI @clownscrytoo. I am sorry you are suffering with a terrible case of fibro. My Mom..." + (show)
@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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Two things we want ,get rid of pain ,and o be made comfortable.If this works for you then that's all that counts.

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robbinr | @robbinr | Jan 25, 2018

Annoying that is! But do you have someone else to go with you? I know when I go to the Doc, I immediately space out, start thinking of worse-case scenarios, and don't hear a word she says. Another "Quiet" person to bear witness is a good thing. I took my cousin to a Fibro clinic and her mother, my aunt, insisted on going along. Then she proceeded to tell the Doctor about her illnesses. My cousin, the Doc, and I just looked at each other over her little head and agreed that Auntie D needed to wait outside:} But I took copious notes. Even taking a small tape recorder can be helpful.

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2 replies
LynneB | @lynneb2110 | Jan 25, 2018
In reply to @taterjoy "HI @clownscrytoo. I am sorry you are suffering with a terrible case of fibro. My Mom..." + (show)
@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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@oregongirl, amitryptylene may or may not require a tapering process, as many antidepressants do. I know my Effexor does. Just as a side note, that’s not the same as opiate addiction. If you for any reason are wondering whether it’s the right medication to help you to sleep with (for instance, weight gain), ask your doc when you go. If you elect to come off of it, he or she can advise you on a taper schedule if it’s necessary for that particular drug.
Xo
Lynne

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trueheart | @trueheart | Jan 25, 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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Hi I don't know what pain you feel but and not a doctor but maybe a change diet might help and more salad frozen veggies lean meat back in 1996 my sister died of cancer I told myself eat healthy well was able 40 miles on bike and jog 12 miles and do pliait well that was a long time ago. I became a vegetarian for a year in half I did find out that eating just veggies was good I got light headed . My dad had dieibies and used his blood test and it was down to 40 I figured I better eat a little more sugar and protein shake like I said earlier I'm not doctor I just remembered what my dad said about doctors he goes do you know why they call it practicing medicine you are like a ginepig they practice on you ha ha ha of I was just joking I don't mean any disrespect. I hope you try to have a nice day

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trueheart | @trueheart | Jan 25, 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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I mean eating just veggies is not good. PS I don't type much is the most I type I 5years my fingers are to big for these little letters. And l don't know about emojis and simbyls for word

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megh | @megh | Jan 25, 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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Well, Fibro pain is what it is. I take pain meds. But the bigger issue is interstitial pulmonary fibrosis. No treatment. No plan. Prognosis...5 years. So if you could help with that, I'd really, from my heart, appreciate it. Thank you Manya

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megh | @megh | Jan 25, 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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Keep it up. Your doing fine.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 25, 2018
In reply to @swamma08 "I was diagnosed with fibromyalgia almost 20 years ago. Nothing I have tried has helped the..." + (show)
@swamma08

I was diagnosed with fibromyalgia almost 20 years ago. Nothing I have tried has helped the constant pain. My doctor will only give me Fioricet without codeine. I also have postherpetic neuralgia after a bad case of shingles 3 years ago. Every night I take a Fioricet, 3 Tylenol PMs and a small glass (or 2) of brandy to help me sleep. I know I'm headed down a bad road cuz my husband tells me my respirations are very slow and shallow while sleeping (about 10-12/min) and it's very hard to wake up in the am. But I feel so desperate to escape the pain for a few hours that I'm willing to take chances. i'm too chicken to go out and get some of the good stuff on the streets!

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Hello @trueheart, You are in the right screen. The timelines in these discussions can be confusing, for me as well. The discussion itself was started in 2016, but many members are still discussing in real-time. The best advice I can give is it is always best to reply on the website and not via email reply. If you are getting email notifications, I recommend always clicking on VIEW & REPLY and it is much easier to know who you are replying to and when. I hope this helps explain the times a bit more.

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