sewbaby

I continue to read all the comments, as a fellow suffer, list to long to go into right now. 18 diffeent meds plus an occasional round of steroids, which I refuse to take ona permenant basis. My younger sister also has RA, etc... she is 8 1/2 years younger than I and I've watched all the crap the doctors have put her through over the years, four different surgeries on her feet to remove growths some even had blood vessels growing in them, which no one ever seemed to be able to explain. We also watched our mother go thru this with the exception that mom just gave up and over medicated. Found her in her home one morning . But i have watced my sister go thru the stuff the steroids did to her and I want nothing to do with it. I changed dr.s recently and thank GOD that he is trying everything slowly one step at a time, not just massive changes and come back in 6 months. some days i just want to stop taking everything and see what would happen, but i know better, under some control is better than nothing. I have pictures of a car accident that i was in in1995. was in ICU 15 days, broke everything from neck to waist except spine and crushed several of those, when I'm having my worst days I get these pics out and look at them and thank GOD that I do hurt, that i can still do anything and for my wonderful husband and three children who are very supportive and irritating at the same time they have a cow when i forget my phone when i leave the house, i have noticed that no one has mentioned bladder control, and very few IBS's, and the one thing that REALLY< REALLY bites my better half and myself is our personal life is has taken a major nose dive because of my problems .

Mousie

will have to come back and read more later, bc unfortunately for me, one of the bad things about fibro...and they're all bad :cry: , is my sleep is so not stage 4, restful sleep, I fall asleep at the drop of a hat during the day.
I can usually fight it off, but we all know how miserable that is, the blink, blink, blinking, the head drooping every so many seconds...I can do this for quite a while before i must "jar" to keep from falling and wake up just enough to go get some water and move around.
You want to go crawl in your bed and shut the world off, but unfortunately I have all kinds of gastro. problems too, and cannot lay down in the daytime at all.
For me, fibromyalgia is like having the flu without the fever.
It is like a sunburn all over, and my neck and shoulders are the worst. Sometimes the lower back and hips really flare up.
I have a lot of trouble with my legs and feet and a lot of stress/tension headaches.
It adds to my irritable bowl syndrome.
There are foods that are inflammatories for me: onions, garlic, corn, ascorbic acid containing foods and SUGAR!
Sugar really exxacerbates my pain and I can't touch artificial sweetners. They are made from corn and corn just whammies me.
Eat corn and chocolate on the same day? and my lips and face swell.
Oh and the itching from the ascorbic acid (vitamin C)...that has been a lifelong thing that runs in my family on my dad's side...and there is a mild rash, but that adds to the whole puffy, achey thing too, head to toe.
You feel like the Staypuft marshmallow man a lot.
I get cold in my bones, is what I call it. Not just the, oh lets put on a sweater cold, but a deep down, chilled through and through kind of thing.
Lots of water helps with the histamines my body throws out as a reaction to the foods and environment, but then I freeze.
Heating pad and rice bags that you heat in microwave help a lot.
I daydream about being in a tub of very warm water, up to my neck, but I don't do it, bc it is so hard to sit down and to get back up.
Almost takes an act of congress.
I take Cymbalta but not able to take enough to help.
I am already a little heavy so don't want to try the Lyrica.
I take two extra strength Tylenol, three times a day, bc I can't tolerate narcotics.
And i suffer. It affects my mood, my diet, my sleep, my sleep, my sleep...which affects my energy and what I do and don't feel like doing in the daytime.
I get a lot of exercise from yawning :wink:
Exercise - walking my dog, helps.
Abstaining from foods that aggravate helps, and then I get anemic, so I rotate, take iron every day and cut vitamins and take every other day, bc vitamins taken too often aggravate too, but in the right, scheduled amount seem to help.
You have to make yourself get up and move around, eat well, stay on a routine with your sleep schedule and keep down the stress. Cold aggravates, sitting too long will aggravate, standing/moving too long aggravates...but stay away from the sugar.
It is proven to bring down the immune system and fibromyalgia is an immune system disorder.
zzzz...time to move :wink:

bjcombs2022

Grammo, did you open a yahoo group for us?

Bonnie Combs

dsj

Holycow sewbaby, Mine was triggered by two car accidents within a couple of years apart. They were both major accidents I was hit by a drunk driver in the first one and had a severe puncture wound to my left calf that severed nerves, the surgeons said it was worse than a gun shot wound. They wouldn't do surgery on it, there is really no way to repair the damage. The second one I was hit head on. That's the one that took me down. It has been a struggle for me ever sense. Although, I didn't suffer injuries like you did you poor little thing, goodness, but enough to haunt me everyday. I do have the bladder control issue, I have always had issues with that even when I was little, but I have also always felt like someone has beat the heck out of me, even when I was a little kid. My sister is the same way. I do have IBS symptoms terrible along with all the sleep issues and restless leg syndrome. Fibromyalgia and chronic fatique syndrome is extremely complex I feel for everyone who is dealing with it on all levels. I am in remission now but I expect it to hit hard and heavy about 3x/yr. I manage mine with diet and exercise. I was on 17 different meds for it which never made me feel any better so I quit all of it. I researched it and everything that I have found to help is diet and exercise and I have to say for the most part I feel so much better. I just refuse to let it spoil my days I push through it and want to cry most of the time but I don't think its going to go away and I have a long time to go still, so exercise is my medication. My heart is with all of you that suffer from this.

dsj

Doesn't it amaze you when you hear that there is no such thing as fibromyalgia that it is a generic word for an unknown problem. The the professionals should read this site, we all have the same issues what the heck is it then and why do so many people suffer with it. I do think the processed foods and the preservatives have something to do with it. I suffer with a ton of food allergies and seasonal allergies too along with contact allergies. Changing eating habits and getting the sugar and caffeine out of our diets can help tremendously. I think a lot of it is hormonal also, heck, I have no idea what causes this nonsense but I don't like it one bit.

Charity Quilter

Quiltncrazy you sound identical to me.....bone chilling cold, IBS, NO can do Sugar!, etc.... Yes, diet and exercise are a lot of help and I too push my self, push through the pain. I am not going to end up in bed all day long because of pain. I refuse!

I want to know what causes this just like the rest of you, it's very discouraging to go from Doctor to Doctor just to hear the same answers over and over....and then to be put on drugs that just mask the problem. I want a cure not a mask! I've quit going to Doctors except for yearly physicals. I never get an answer so why waste my money~the Doctors don't know any more about Fibro then we do~! Isn't that true? If you have a Doc that is working with you and has knowledge of Fibro ....stick with him or her.

Here are a couple of ideas for pain from the health food stores: White Willow Bark by Solaray. And Relief by NutriBiotic which contains White Willow Bark Extract. These are "natural" Aspirin alternatives. Alternatives....not Aspirin.

I have to stay away from fried foods because of IBS.....fried foods are no good any way so no big loss. We bake instead of fry. Large amounts of fresh veggies and fruits~organic is best. Though I have to be careful with the fruit because of the natural sugar. Chicken or Turkey meat is all we eat. Dairy is not a good choice either and I love cheese! I splurge every once in a while.

If anyone needs prayer please don't hesitate to ask...as I have a prayer ministry. You can PM me. My prayer partners are awesome~!

Charity Quilter Dar

grammo013

Be about another week as I am getting my cataracts removed and husband having surgery for hital hernia this week. But I will hmmm could be doing some while waiting.

The bladder thing I use to go for hours and not go because of my work. Now I better be close to bathroom when the urge hits. Have wet my pants several times trying ti get there.

Ditter43

Sewbaby,
Yes, we have to be grateful for what we can do and not dwell on what we "could" do before. So many people are suffering terribly from fm and related disorders. I see myself in the posts from all of you. Lately it's been the burned smell stuck in my nose that is so irritating!! As much as it has been running lately, you wouldn't think any smell could survive in there!! Oh well, I will be grateful I have a nose that can still smell even bad odors!
I hope you are all having the best day possible!!

Ditter

Ditter43

DSJ, I am glad you have found ways to cope and keep your symptoms at bay!!! I can do it most of the time......it's those other times I haven't quite learned to accept...and I have had fm since my late teens. I sometimes go long enough without a flareup to almost forget the ugly beast hiding, waiting to pounce!!
Keep the faith and keep smiling!!

Ditter

BrendaB

I have systemic lupus and fibromyalgia. Anytime something isn't right, I blame it on one or the other since it's nearly impossible to tell the difference. I'm so sorry you are having a flare. I will keep you in my prayers.