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.

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.

Jump to this post

Hi thank you for tell me I guess I will tell you about the pain I have the thing is I don't take pain med I just have a lot of pain I after surgery did take nuroton a nerve med for a few month and a had three teeth out it made my teeth hurt bad and did help with my back so I stopped take it I had a tumor in side my spine and thought it was a back ache and I had what I thought was a back ache for two years people asked in those if I was ok I always said yes I am ok I thought a little back wouldn't slow me down. I sure was wrong and before the surgery I was in denial about the pain I didn't want to give up it took my legs arms go num and legs go purple and couldn't stand falling to time to go doctor ...I in pain so skip some things. I can't type this long. Back to story. At the time I didn't know that a tumor was in spine cord blocking blood flow through out my nervice system yes I was in bad shape I was life in death stuff I didn't n have a long to live I had to have surgery I didn't just have a back ache well I had surgery and found out or Google right 10,000 people have spine tumor and and live pass a certain amount of years I the 28 % that live I talk to probably 100 or more people with normal back surgery but I have yet met someone who has had spine tumor

REPLY
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.

Jump to this post

O I don't take pain med and if I didn't vow not to drink alcohol over 14 years ago I would of try alcohol but what I found out about a vow the longer you keep it it seems the stronger you get and that was a very good vow I in pain every day I take one day at a time that my life Trueheart

REPLY
Texas Freedom | @oregongirl | Jan 25, 2018
In reply to @robbinr "Annoying that is! But do you have someone else to go with you? I know when..." + (show)
@robbinr

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.

Jump to this post

Well, I wanted my son to go to the Oncologist with me. They did a lot of blood work also I asked my two doctors if they were preparing me for NASA Space shuttle? I guess they thought I had blood cancer (I forgot what they called it, maybe lymphoma....?? But, I was told by my Rheumatologist that I did not have it. Tomorrow, I will hear those words from the Oncologist. Thank God, I am already dealing with two diseases and do not need another one. Actually, I also am at Stage 3 Kidney failure. By all rights I should be flat out and instead I a alert and feeling less pain tonight.

REPLY
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.

Jump to this post

Thank you Lynn

REPLY
Texas Freedom | @oregongirl | 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!

Jump to this post

Swamme08 This may sound weird but, when I was diagnosed with Fibromyalgia, nothing would help the pain except a hot bath. But, when they found out I had RA I was put on a drug used for RA and my paid has subsided. The first few weeks of the new drug I thought I was going to die. I could not eat and kept throwing up. I was taking the pill form of the drug. Now I will be giving myself injections and receiving Infusions 4 times a year. 4 times as that is an Insurance thing I guess. These infusions are not cheap, They are bout 16 Hundred dollars each time. I might be wrong, they are more than that I think. But, I never had any relief until I got this drug going in my body.

REPLY
Texas Freedom | @oregongirl | 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.

Jump to this post

I am so sorry, Megh.. I am praying for you. I have to look your illness up to better understand it.

REPLY
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.

Jump to this post

Hi I don't know if you where talk to meg or me it came to my email I not only here a few days these last few days is the most I type on never. I type slow can't spell good and before when I work I could work a 120week working sweat (two years before surgery ) I bearly was on internet talk to anyone I was always working on sorry if you were talking to meg then me

REPLY
edda | @edda | Jan 26, 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.

Jump to this post

I feel for you! I hear those words all the times, and I only tell myself, that the person wants me to get better and does not understand the pain.

REPLY
Texas Freedom | @oregongirl | Jan 26, 2018

Oncologist told me today my test came back positive. Then they have done two tests drwing blood and now they have a negative. Strange. My prayer was answered

REPLY
Parus | @parus | Jan 26, 2018

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 🙂

REPLY
18 replies
View MoreView Less
Please sign in or register to post a reply.