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.

edda | @edda | Jan 24, 2018

I experienced myself, how friends or neibors can be, when it comes to chronic disabling pain, which is not obvious to the untrained eye. Do not get upset, it is mostly not meant belittling, just thoughtless.
What bothered me most, that doctors look at me and say, you look so well and we can not see anything on a blood test or x-ray, that showed anything.
Makes me fee like a hydrecontiac, when I have terrible chronic pain, only husband is seeing.
Once a couple of years ago, it turned out to be a very serious blood artery pressure in my brain. UCLA operated in two days over a 4th July weekend
by a professor and it was successful. It shows you, that when you have pain, which does not go away, and you only know that yourself, listen to your body and seek help at the best hospitals, like Mayo or Mass Gereral. You have to be your own advocate!! Never mind those friends, who drop you,
when you can not make an event and cancel, because of pain. The real friends will stick by you, or it may be time to look for new ones.
Good luck, and I hope, I helped you.

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lioness | @lioness | Jan 24, 2018

Edda I like what you said

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Texas Freedom | @oregongirl | Jan 24, 2018
In reply to @jamesthee "The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I..." + (show)
@jamesthee

The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I walk for more than a minute or so. I"ve been checked for PAD, no problem. Spine does not have significant stenosis. Are these symptoms part of fiber?

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Lioness. I am so sorry for you. I have episodes or flares. Some last a couple of days and some a month or more. I feel older than I am. I am 75. I have given up on pretending I don't hurt. I think pretending I am pain fee just to get thru a dinner with family is not worth it

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lioness | @lioness | Jan 24, 2018
In reply to @jamesthee "The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I..." + (show)
@jamesthee

The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I walk for more than a minute or so. I"ve been checked for PAD, no problem. Spine does not have significant stenosis. Are these symptoms part of fiber?

Jump to this post

Thanks for your words I'm 75 ,today I feel like an old women Im usually very active.I'll get past this,always do but it's nice to hear some others know what I'm going thru today.Thanks Lioness

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lioness | @lioness | Jan 24, 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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Thanks for your words After this flare is gone I'm going to see rheumatologist about Elavil back in80,s tried it didn't seem to help them ,I don't think I gave it a chance.

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lioness | @lioness | Jan 24, 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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Dearest Swamma08 please stop mixing drugs as Jen says the Tylenol,Advil @Aleve have detrimental effects on your liver @kidneys As a nurse I've seen the effects of to much Nsaids Tylenol in small doses once in awhile but not everyday.See a pain Dr.or rheumatologist asap.Praying for you God is the answer ,when hurting seek him and he will answer

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Texas Freedom | @oregongirl | Jan 24, 2018

Lioness. God is the answer. True. It gets hard for me to walk, but God is aware of me and loves me

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2 replies
Texas Freedom | @oregongirl | Jan 24, 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.

Jump to this post

Get the right doctor and you will see the difference. Mine is outstanding.

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lioness | @lioness | Jan 24, 2018
In reply to @oregongirl "Lioness. God is the answer. True. It gets hard for me to walk, but God is..." + (show)
@oregongirl

Lioness. God is the answer. True. It gets hard for me to walk, but God is aware of me and loves me

Jump to this post

Amen I find what else helps is extra magnesium,1000mg ,calcium research I've done says this helps alot for us with fibro.Take it before bed it also helps sleep Bless you Linda

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GailBL, Alumni Mentor | @gailb | Jan 24, 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.

Jump to this post

@lioness

I tried amitryptaline (Elavil) once a few years ago and my blood pressure shot sky high. Just be aware that for some people this happens. I had to stop taking it. Otherwise, I know others who use it and find it very helpful. I hope you find relief.

Gail B
Volunteer Mentor

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