BellaOnline Forums Health and Fitness Fibromyalgia & Chronic Fatigue Syndrome trying to learn to live with fibro

Hi to everyone, Im new to the forum and hoping to find other fibro suffers like me.

NEED HELP!

Les

What in particular do you need help with? There maybe one or two things I may be able to discuss with you. I don't know, and won't until I can figure out what it is you need.

Right now all I can tell you is hang on. I waited for 8 years to get SS, (just got it June '08) and even though I worked long enough, due to weird happenings at the SSA they decided that I became totally disabled 5 years after I last worked, so am only able to get SSI.
That, unsurprisingly took a great deal out of me, and I am still dealing with major depression. I tried everything I could think of, including going back to school before asking my doc if he agreed with my situation. (although, before the FM hit, I had other problems, that I am sure continue to this day because of the FM)

As I am sure others were, I was raised that I would grow up and take care of myself. To be so dependent is shattering. I was on food stamps and general assistance, until I was approved for SS. I am now STILL dependent on my parents. At 42, soon 43.

Life is NOTHING as I had imagined it after graduating from high school. I thought I would have a degree (well, I do, it took me 10 years to get that BA) gone to Japan, married, lots of kids, well you get the idea.

One of the hardest parts is also that growing up, learning to set goals, I never had a problem achieving them. Of course, most of them were short term, or year, 2 year goals, but not achieving even short term goals these past almost 20 years is again, shattering.

I had to redefine what I considered "goals". Whereas "getting up every day" seems laughable in most people's views, that is something that I work at every day, and occasionally don't attain, but still, the goal is there. Unfortunately, it seems as if most goals I attempt to reach are never attainable. Simple goals, growing up, like read this book in 2 weeks, were quite attainable, and now that I think on it, perhaps those are the sort I should think on. Especially since I truly do like to read. I just need to make sure that I actually WANT to read them!

I don't know if this has helped any at all, and this doesn't sound more like rambling on, but, there it is. I can't go back and do what I would "normally" do, edit, re edit, until it is practically perfect because I know this will NEVER get posted if I do! So I will trust I won't read it afterwards, and wish I had never committed any of my thoughts and words to "paper" and be hugely embarrassed but grammar, spelling, though process, etc.

Good luck. Hang in there. And don't forget - your trials are just as important and as "big a deal" as anyone else's. Don't trivialize yourself to the point of berating yourself. I've done it. Probably will in the future, but I will try not to. You are just as important and worthy of love and attention as anyone else.

Loads of love sent your way,

Dawn "i love dobermans"

I have fibromyalgia. I suffered with migraines since a teenager. About 8 years ago they became unbearable. I have learned to take one day at a time. Try not to think about the pain and discomfort, but focus on those things I can do. I have hundreds of unfinished projects. I have to give up my love of antiques because I can not move the furniture or lift light things without problems later. Caffeine makes the pain worst. So I gave it up. Sugar and preservatives don't help, either. Synthroid for hypothyroidism makes the pain the worst ever. Antidepressants don't help me. They do all sorts of things to me. I am in physical therapy. That brings immediate relief and helps a lot, but doesn't eliminate the fibro. I take no drugs for pain not even tylenol. It is purported to cause liver damage. My sister took medication for polymyalgia for 19 years. Now her liver is malfunctioning. She is losing her eyesight to macular degeneration. She has a host of medical issues and she weighs over 300 pounds. She now has to take 15 medications to counter what the others did to her. Warm compresses, warm water, ice and gentle massaging really help. I know I am torturing myself, but I don't want to create more problems until my doctor can find something that helps me better.

Walking probably helps in the long run. Most of the time when I finish my walk, I am in excruciating pain in my hips and sometimes thighs. It is important to get Vit b12, magnesium and C in your diet. Selenium, calcium and other minerals taken in the evening seem to help me sleep better. I am looking into the Myers Cocktail to see if that helps. If anyone has taken it, please, let me know.

It is best to keep your stress down, don't push yourself physically and be positive. There is hope. I met one lady who is in total remission. She did these things as well as going on an organic diet and and now has no symptoms. There is hope. Don't ever give up. At 50+ I am still thinking about going back to college to get a Master's Degree in something. At this point, the area of study doesn't matter.

Hello Leslie, I am new to the forum and feel your pain.

Delores

Thank you for that information as I having been taking Percocet, Lyrica and Ambien CR to sleep at night but I am still in pain when I am awake. I have herniated disc in my neck as well so all these years (7) I've been thinking that it was the herniated disc and it's the fibromyalgia so I have taken so many medications for the pain like skelaxin, and all sorts of muscle relaxers. I am very frustrated now because I don't know if I should continue to work as an Admin. Asst. or find another career.

Hi my name is skits and I also am knew to this site. And I have fibro. I have had it for 30+ years.How do you live it? One day at a time, enjoy the good days,for the bad outways them 10 to 1. I hope to make great friends here people who have this need friends so much and so much of the time our famalies just do not understand. love to all
skits

Hi skits!
I have fibro too -- I take one day at a time and do what I can. Good attitude is a +.
Don't concentrate on what you can't do -- celebrate what you can, that's what I do.
Sheryl

Just want to welcome all the newbies to the forum, hope yous enjoy your stay!
Rosie

Hi all:

I have had fibro for about 15 years now. it use to bea lot worse, but these days (Thank God) I am able to live with it.
I don't take any meds. I found they immobilized me even worse than the pain. At least with the pain I can do things even if it hurts. With the drugs I was so out of it I couldn't get off the couch.
The things that have helped me most:

1. I became single. After my divorce I sleep alone now... no snorer or bed hog, so I am able to get a good nights sleep. I don't suggest this method, but I don't see any reason why married couples can't have separate beds, at least a few nights a week so the fibro sufferer can get some sleep. it might benefit all invovled

2. I use an electric blanket. This has been the biggest help for me. If I can keep my body nice and warm all night I don't wake up as stiff in the morning.

3. I've learned what causes flare ups and avoid that. Some things you just have to give up. But be sure to replace it with less strenous activity. Some days it wins.. I don't fight it, just give in, relax and find something enjoyable to do like read or a quiet hobby that isn't strenous. Try to enjoy the bad days too.

4. I've learned to ask for help too. Nothing wrong with sharing chores with others when it's something you can't do. If you were too short to reach a top shelf you'd ask for help, so why not with this?

Bylen

Hi to all fellow sufferers

I finally realised recently that I have probably had fibro since I was a child. I am now almost 60. Also I think something like an accident or shock brings it on. I was in a 2 car accidents as a child. Things that I couldn't understand about my general health in the past now all add up once fibro is put in the picture. I have learnt that you just have to go with the flow and I have also learnt what foods cause me pain, tomatoes, citrus and corn being the worst. I sometimes wonder how many years of pain I endured before I realised that food played a part in it all. The terrible burning all over, especially in my head almost drove me insane, yet I never clicked it was food related until recently. If you haven't read my other post, I now take colostrum and I am certainly feeling miles better. I hope whatever remedy you try works for you. Fibro is a very unkind condition to have to live with and for me is made worse by the fact that I have 2 other relatively serious chronic illnesses as well, one of which was caused by a sensitivity to steroids. Of course the drug sensitivity was caused by the fibro, only I don't think anybody knew anything about it way back then. Now I at least understand why this happened to me when other people could seemingly take the same treatment with no side effects. I have come a long way and learnt a lot. We don't get much choice as to what is dished out to us in life. All we can do is try to find ways to make it all easier. For me it is a healthy diet, as few drugs as possible and whatever supplements that I find are helpful.

Take care