Anyone else with fibromyalgia?

[rrrmamma]

I'm having a bad fibro day. Just curious how you all cope. What works,what doesn't.?

 

[bsamuel]

hi
i have fibro, its been bad the last few weeks actually, the worst its has been in a while, i could not sleep so hit the Internet looking for answers. this is the first time i have ever answered anything on line I don't know about you but mine has cycles and attacks different areas.. some are easier than others there is the all over body ache, which is the easiest and there is the hard one that i am in now which is the bad headaches and ear neck aches. it is hard to function i had to work today and i don't know how i got through it,,,, and then there is the teeth issues which makes me think i have to get a root canal ten trips to dentist and nothing,,,, well any way the only thing that helps me is acupuncture and biodentical hormones i am not on any meds because i feel they can make things worse a they only address the symptoms and not the issues. i also feel hormone levels and circulation are part of the problem..... read the chats everyone has same issues chronic fatigue ibs.. etc.....

 

[Caribear]

I have fibro too, but mine is in remission by the grace of God and using progesterone cream twice a day. I have also learned to take it easy, because remission doesn't mean that I am completely without symptoms. I give myself permission to sleep when I need it, because I think that's a big part of the fibro problem. And I watch my salt and sugar intake, because they both make me hurt.

Mine also used to cycle and attack different areas. I would also react to the weather like I had my own built-in barometer. Cold weather caused a deep, biting ache; thunderstorms were (still are) random stabbing pains. When I was at my worst, I could tell you 30 minutes before a storm front would hit because I would be in a ball on the couch.

I think the best way to deal with it is to take it day by day. And pray a lot.

 

[redhen]

Is there a test to test for fibro?
How do you guys work with it? I thought you could get disability for it?

 

[EweSheep]

I have it too! Painful at MOST of the time. Stress would just push me to the limit at the end of the day!

 

[stoopid]

I am lucky enough to also have RA, and my rheumatologist prescribes vicoden.
Doesn't take away the pain, just makes you not care as much.
Another one of the reasons I call myself stoopid, being on drugs all the time.
It all got way worse after I got Lyme disease, that's how I got started with chickens and wound up here.
I just quit my job a few months ago, it became impossible to work a full day.
Still trying to get disability, and since I voluntarily left, no unemployment for me.

Hugs to all of you in as much pain as me

I wish our healthcare system was just a little more caring.

Red, I don't think there is a test. There is an Epstein-Barr reactor that seems to be common, I think doctors just associate the two and bunch us into one group.

 

[justbugged]

I don't recall what it is like to be pain free. It's been so many years of pain, that I am not even sure I would even know what it would feel like to be pain free. I mostly ignore the pain. I know that it is meaningless. I am in no danger, and I will not die of this. But the quality of my life is so poor, that if I did get something like cancer, I would not accept treatment.

I do have a good doctor. I do have access to some vicodin. It's only enough that I can be slightly comfortable for about 4 hours in any given day. I am also taking a large dose of Lyrica, It only helps with the nerve damage in my feet. Without the Lyrica, I am not able to stand on my feet for any length of time without extreme pain. I have found that the synthetic narcotics are completely ineffective and essentially useless.

Just to add to the fun, I have had bursitis in both hip joints for the last 2 or 3 years. I have recently been diagnosed with arthritis in the sacroiliac joint. All of this makes sleeping difficult. I can't seem to find any comfortable position to sleep in. The pain will often wake me up in the night.

Then there is the mind fogs, and complete lack of energy. I have so many things I would love to do. I keep my animals simply in order to make sure that I have to get up and get something done everyday. There are plenty of days when the only thing that gets done is feeding the pets.

I still am looking for a solution to all of this. I am willing to try just about anything. I tried a vegan diet, and a number of alternative treatments. I just can't afford most of them any more.

i haven't worked since 2004. I do have the support of a loving husband, and he does earn a very good living. But I would still rather work to support all my interesting ideas. I have never worked more than 25 hours a week. Any more and I am not effective, and I am simply to maxed out to think very well.

I applied for disability back in 2006 or 2007. I have been denied repeatedly, because I used to treat the Fibro with alcohol in the evenings. I have always been way to honest about what I am doing or trying. I think the case for disability is still on going, but I am not holding my breath. I don't know how anyone get disability for Fibro.

I wish there was a magic solution to this life. As far as I know it's better to resign your self to the fact that you are going to hurt for the rest of your life, and there isn't much you can do to make it any better. This is my life, and I have to remember that there are many other things to think about and play with. I do take time to be happy. There are times when it can be very hard to say that I am happy, but I choose to be happy in spite of all the pain that I live with.

 

[turney31]

I have it...Justbugged nailed it. Miserable. Muscle relaxers and aleve for pain. Lyrica makes me nuts.

 

[stoopid]

I'm not thrilled with the Lyrica, but if you take 2 at a time, it makes you very stoopid.
Sometimes helpful, but I stopped that.

Massage therapy is great, but VERY expensive.
Accupuncture, eh. Sitting for an hour seeing needles dangling out of my face just didn't relax me.

I am interested with the talk about hormones.
I have also had a hysterectomy, and would like to thank my gyn for removing my ovaries and assuming I would take HRT for the rest of eternity.

NOT!
However, I feel my mind has improved since removing estrogen from the party.
No more hissy fits, crying, and woman meltdowns.

And I too, seem to get in more trouble telling the truth rather than lieing. sigh.

I must ask... Has everyone been tested for Lyme? It is spreading at an alarming rate, and DON'T think since you live in the south or on the west coast that you can't get it.

 

[Caribear]

@ redhen, there is sort of a test for it, but it's not an accurate test. It used to be that you were diagnosed by having a doctor press on 18 specific spots on your body, and if you had notable pain at 11 or more of the 18, then you had fibromyalgia. But the problem is that the test was not accurate, and not all doctors could find the exact spots every time. So now they diagnose you if you have had pain in all 4 quadrants (upper body left and right, lower body left and right) for three months or more, and haven't tested positive for the hundred and one things they test you for that might be causing your symptoms.

I also have degeneration in my spine. I have 3 bulging discs, arthritis, and a cyst on my spine in my lower back. I have been to the chiropractor so many times that I learned how to put myself "back together" when I need it.

I tried savella, lyrica's little sister, and ended up in the hospital. They thought I was having a heart attack. Turns out my body just hates savella. I was on Cymbalta and muscle relaxers, and gabapentin at night. It seemed to help. But honestly all the side effects were driving me nuts. After being on the hormone cream for a while, I was able to wean myself off of everything except the Cymbalta. Then not too long ago my doc forgot to refill my prescription for that, and despite many calls and faxes to the pharmacy and doctor's office, I ended up going off it cold turkey (not by choice, either). Not pleasant. So now the only thing I take for the fibro is the hormone cream, and my symptoms are manageable. I still have some pain, but not nearly what it was.

I was going to try for disability, but because I am so young, I don't have enough credits to qualify. And I just never got around to filing for SSI. My rheumatologist kept wanting to try "one more thing" before she would sign off on my paperwork. And now I'm kind of in that limbo where my symptoms aren't bad enough for disability, but I'm still not well enough to work.

Honestly I think all you can do is pray, and try to be happy despite what your body is doing.