Fibromyalgia Community

Hello and welcome......MiMi in NC....I think that a person must figure out what will work for them and continue to tweak and twist it in order to keep it working as we age....I have been on this roller coaster of sorts since 2005....when I had all sorts of *health issues* which had to be addressed....before I figured out what would help me cope better....and it is still an on going process....there are some days which are indeed better than others...and the thing is I never know why....I continue try to figure it out but can not do so....perhaps it is just a combination of things....such as the weather, my hormones, my stress, what I did or did not do....what I ate or drank....I am sure that everything tends to affect FM...

As Nana B. states....you have to figure out how to *dance with the dragon*....and perhaps stay one step in front of it....

I do know that I have learned all sorts of good tools and tips along the way....with most of them being right here...this group is a good group of support FMers.....but what you read is one thing...as it depends upon you as to what you want to do...or not...

I do encourage you to learn all you can about the wrath of the dragon, aka FM....learn how to pace, pace and pace even more....FM is a very mean and ugly illness....and is indeed really hard to understand....but with time and effort it does get easier and better to know just what you can and can not do....you have to learn to *listen to your body*....

I would also like to say....please get your doctor to check your Vitamin D level......(this is my favorite tip)....
I have shared this with anyone and everyone who will listen...there is not a day that goes by that I do not bring this subject up.....IT IS IMPORTANT....for a lot of people...low Vitamin D can cause additional pain and it can also affect other illnesses as well. (according to the medical research that has been done on it)...

I hope this helps.

Take care and good luck.



MiMi

I have to laugh...my initial answer to this is..

One minute you are 30 and the next you are 90 y/o.

The real answer is how well you care for yourself and develop a toolbox of tricks to stay in shape and get out of trouble is going to go a long way.

Aging doesn't have to be falling apart*, so many 80-90's I see are in good shape and genetics plays a role in this. Our genetic pattern has sent us down this road so anything we can do to level the playing field and stay as best we can....we need to do it.

It gets tough when you have symptoms and can't figure out "is it the dragon? Is it my age and the crap of getting rusty? "

Good question, not so easy to answer......this doesn't have to progress from where it is, in fact I have gotten better with the knowledge and tools I have honed in this argument....now turning into a dance with him.

Good luck, get educated and figure out YOU and what works.

Nancy B

I have had fibro for 22 years and see the frequencies of my flare ups and the intensity of them increasing. Is this anyone else's experience? thanks.

I am 44 and was diagnosed with Fibro 2 years ago and the pain has increased 2-fold since then.. I have been walking, and eating right and this does not seem to help, I even quit drinking. I use to jog 4 miles every day and quit in 2008, but was not diagnosed until 2 years later and my pain went from occasional to every day now. I struggle to sleep at night, I hate pills so I have an issue with pain meds of any kind, they do me more harm than good, not to mention make me sick. If I sleep better at night, my daytime pain is not as bad, it is more tolerable. But I will agree with age, this illness does progress, at least so far it has with me.

I was diagnosed with fibromyalgia ~10 years ago and it has only been in the last year and a half that I have been unable to work. I was calling out sick every other day. It has limited me and frustrated me to the core that I am unable to work anymore. I am currently fighting with the Social Security Administration with the help of an attorney to get benefits.

In addition to the FM pain I have the ugly return of severe migraines.

The blessing is that I have a wonderful and supportive husband and family.

Perhaps once I get benefits I will be able to take better care of myself. Right now money is so tight, that sometimes we and to choose between food or paying for my overly expensive Cymbalta.

I was diagnosed in 2005, and the dragon has gotten worse as time goes by. Sometimes I feel better, and then I can take walks and do yoga. I have not found any real help from medication, but I also have 4 herniated and 1 bulged disc in my neck and back, so that is what I am medicated for. It helps somewhat with the fibro, but not enough to manage it.
I also gave up work 1 year and 1/2 ago. I tried to stick with it as long as I could, but when I could no longer perform my job to the best of my ability, I gave it up. I am also fighting for disability now, and hope that it goes thru so I can afford massages, accupuncture, and trips to the gym to use the hot tub. I have a wonderful family and would like to take some of the heat off of my husband. He works very hard at his job but with me not working it is pretty tight.
I do take extra vitamin D, because it also helps with depression. I find I like this web site because it is smaller, and affiliated with WEB MD.

I have had fibromyalgia for 5 yrs now. I too am fighting for disabilty. I have depression and lower back problems. I can only see help from my meds for apprx. 3 or 4 hours and then it's not complete help. I use my hot tub 3 or 4 days a week now, but it will be every night when it gets colder. I have gone from a woman that much could't keep me down to someone that needs help getting out of bed and uses a cane the rest of the time. So yes it does get worst.

it gets worse. being tired all the time. i have had fibro for at least 25 years and have never had a remission. your mental fog gets worse. i swim and take pain meds. this is the only form of relief i find. i am very tired every day. its no fun!

Hi I am in my 50's. The specialist I saw pretty well told me to exercise except I need knee surgery real bad. So I was told to exercise in a pool that would be nice except there is none close to me. Then the push on Lyrica. I told her I couldn't afford to gain more weight. So my visit with her was done. Went to my local Dr. Got told keep working yes it hurts but it could get worse. She doesn't believe in lots of med. So I got a sleeping pill that will cause sleepwalking. Sorry to hear that it stays the same. I really hate the mental fog I have even caught myself seeing words altogether. Do just swim or do you do exercise? If so what kind?

I also notice my pain from FM getting worse. But living in the New England, I wonder if the weather has a big part in adding to my pain. I also have arthritis and Raynaud's, with a bad back and three discs really to explode. I often say the only part of me that feels ok, is my ears, lol.
I cant take pain meds for my pain, just asprin. Constant pain is so hard to deal with. I just try to keep moving and often have to force myself outside to get some exercise. Believe it or not, the only thing that really helps my pain is Marijuana.
But I dont like getting high, its the same as having a drink, type of high, which I dont drink either. So, the only time I can do some of my pain med is at night, so that I can feel enough pain relief to help me sleep. Even so, I cant afford to buy pot, and mostly never have any unless my friend offers me a little. Im hoping now that its legal in my state for medical use, I can get some. Ive been suffering for so many years!! It really drives you nuts after a while, the constant pain. I hardly ever leave the house, just dont want to go anywhere. I cant remember how long it was when I was was pain free? Im almost 63, maybe when I was around 29. I hope you feel better. Try to keep moving and doing as much as you can. The more you lay around and sit, the worse the pain gets.

I posted where it says to at the end of these comments and it ended up nowhere that I can see. i'm 68....have had FM for at least 20 years, depression since childhood except during the time of having babies....hormones? I believe that FM does progress because it's hard to find something that really helps or lasts. I take Cymbalta but it is not working as well anymore. I also take vitamins and am pres. 50,000 Vit. D a week, and a combo of tylenol and hydrocodone....325/10 tho it used to be more tylenol and less Hydro. I can't take too much or that gives me a very dry mouth. I add tylenol at times. What worked best was a combo with motrin but it ended up messing with my insides. Besides hurting everywhere I get shots of pain in some areas like in my hand or feet so I 'yelp' which can be embarrassing and there's the tender points,,especially elbows, feet and hands. I take a med. for slightly high blood sugar, and blood pressure. I also use Ambien for gettinng to sleep and it has worked well for years with only 1/2 tablet, but I've found it adds to depression so I take Xanax in between but it takes longer to work. One makes me foggy and sleepy in the morning, the other causes me to sleep too much. The weirdest thing is the swishing sound in y head. Fibro fog is a problem when searching for a word in my mind or knowing how to talk to people. I'm not very social anymore. I get overwhelmed easily. Maybe part is just age.I'm just tired, like you said. And Christmas is getting to be too much with 26 of us and a daughter who died 1 week after Thanksgiving at 41, 6 years ago leaving 3 young girls, but they've done well.I didn't think their dad could cope but he has. My Dr,. has been good about meds. but hasn't with pres. for any kind of physical therapy. I've tried chiropractor, even accupuncture, learning the exercises for FM and pool therapy but it just made me more tired and achy even tho I;ve always loved swimming. Getting undressed, dried off, dressed again is just too much. I am very grateful that I have an understanding husband and family tho, and we managed with me being a stay at home mom.
Thanks for listening.

I was diagnosed 10 years ago with fibro and I have noticed that some of my pain in certain parts of my body, such as my Sciatica, has gotten better over they years. Every once in a while I do get an attack because I have Piriformis Syndrome, which is an illness that tightens the Piriformis muscle in your back side and compresses the nerve. But other locations have progressed. For example, my left shoulder/back has always been a weak spot for me, so I get Serapin injections every 6-8 weeks, along with my other pain meds. So I guess my situation is mixed. As with fibro, you never know where you are going to hurt or get another symptom next. I am also a slave to the weather, especially in major changes such as Fall or Spring. Every November, I noticed for the past few years, I am bedridden for at least a week. Last year was the worst for me. I was literally in bed from Thanksgiving until after the first week of this year. So, there are ups and downs, like a roller coaster, but it never truly goes away.

I've had Fibro, and about 12 other auto-immune conditions for 10 years now, and mood disorders since I was a teen (I'll be 54 next month). My pain is now, and has been from the beginning managed with strong narcotics. I hated making the choice back then, it cost me my job and my lifestyle, but it was that or the pain.

I've been lucky in that I could tolerate the meds and my husbands insurance covered them. Our marriage is horrid -- I'm in it only for the coverage. It's one of the many choices I've had to make.

The Fibro has taken a back seat the last two years to a severe endocrine situation. Have you ever had your cortisol tested? After years of fatigue that was unresolved, we added a cortisol test and learned it wasn't CFS after all but an as-yet-cause-unknown inability for me to produce cortisol. This is the one that is life threatening for me, after a ten-year span of hearing nothing but "it's a nuiscance, and may be painful, but it won't kill you" as each auto-immune diagnosis was added.

So Fibro is a huge part of my life because of the pain I'm in, the meds I take to avoid that pain and the side effects I endure as a result, and the life choices I've had to make because of it but there's a new focus for me.

So if my Fibro worse? Hard to say. My life certainly is. But in other ways it's better. I'm not a Type-A any more. I see my daughter 10 hours a day instead of 2-3. I've come to terms with my marriage and my family life and can't say that I'm angry at anyone anymore. The things I enjoy doing (coloring, crafts, bloging) I get to do every day if I want without having to worry about work, laundry, dishes, etc. -- because I don't let myself worry about anything anymore. The new me is so laid back, my place is a mess, and I don't care!

Good luck to all the rest of you. My heart is with all of you, as are my prayers. Social Security is possible -- I'm one of the lucky ones -- so don't give up hope!

Hello ggladieux,
I too have been unable to work for almost a yr now due to misdiagnosed of FM (initially was giagnosed with RA and treated for 4 yrs). My question is how long have you been fighting with SSA?
While I do have state insurance, only my medication and doctor bills are covered. I too feel I could receive better help if SSA would recognize how debilitating FM really can be for some people.
What state are you in? I am in NJ.
Sincerely,
TeriR