How has fibromyalgia effected you and your loved ones lives?

I was dx’d in 2001. I agree with you about Lyrica – I feel like I lost a year of my life to that drug, despite constantly working with the rheumatologist on dosages.

For the most part, I live relatively drug free, with exceptions of tramadol for pain occassionally. That’s mostly my choice, after trying many, many things. I do take monthly b12 shots, low thyroid meds & iron. Sleep meds occassionally, but they don’t work well for me on a daily basis.

I look at the energy I’m given each day as marbles in a bowl. Each day I’m only given so many. When they’re gone, they’re gone. So I have to use them wisely.

I live alone, so I can’t say my three grown children have been greatly affected. But there are things I can’t do. I can’t run a vacuum cleaner, for instance. Big grocery shopping trips aren’t possible without help. Etc etc.

I don’t have help w the housework, but I have done things to reduce what needs to be done. Clearing clutter was vital, for instance.

I haven’t cleaned a bathroom from top to bottom in years. But I can wipe down the bathroom sink and tub daily. Do things in little steps rather than one big job.

It’s great you have help coming in! Exercise spent cleaning house or grocery shopping is “bad” exercise, according to my doctor. Good exercise is yoga (a lot of modified classes are being offered now for people with issued like arthritis etc.) For me, just getting out & walking my dog 3 times a day is good exercise. Riding a recumbent bike is good too.

The more “good” exercise I get, the better. That’s hard to talk myself into sometimes. When I hurt, I want to not move. But after a few years I had to admit the dr. is right. The more I can get, the better I feel.

I have notes to help fight the fibro fog when it’s bad. I’m switching more & more to working from home bc the flexible schedule is better for me. I’ve also had to adjust to less income. It really has been a matter of learning how to live simply.

Find things that make you feel good about yourself. I enjoy knitting. The funny thing about that is my hands hurt all the time. But knitting (for me) is relaxing and when I’m relaxed and enjoying myself it’s easier to put the pain in the background. I also enjoy the volunteer work I do for the Rape Crisis Center. It’s not physically taxing but when I’m thinking about others I think about my pain less.

Needless to say, it’s only some things that work for me. In some ways I’ve chosen to live with the pain and find other ways to cope rather than take meds that seemed to cause me more problems than it fixed.

It has greatly “affected” a family member’s life. There are still many wrong diagnosis of fibromyalgia, but today, at least, it is recognized as a real illness with a real cause.

@netgrrl You look so young and vibrant.!!!!! I was thinkin you were 18.

Carryin beverages – cases of water, 12 packs of sodas, does require help. My hands hurt bad. I’m on disability with shoulder issues too.

I never take a whole pain pill. tramadol didnt work for me. I’ve had the busiest week in awhile and I’m beat….feet burning again. i only take lyrica about 2 or 3 times a week.

I’m glad to know there is a jelly close going through this as well. i’m a gardener and I am gettin out some plants.

Much love.

@jazmina88 ha! Thank you so
much. I’m 51. I’m so with you on the rest. I haven’t bought things like 12 packs etc in forever. I break up grocery trips so I don’t have too many heavy things to bring in at once. There have been times I bring in perishables then get the rest out of the car later. :)

Gardening has to be great exercise too. Have you tried any form of modified yoga? After thinking it wasn’t for me for years, Ive found it can reduce my pain level for 2–3 days after a class. I want to try tai chi too but I’m having trouble finding a class in my area.

What is it about the vacuuming that is bothersome?

I’m just gettin in PT again, a flare had me down. You can get tai chi videos. for seniors even.

I’m just tryin to get a plan together, besides my PT.

My right arm has issues to keep me from vacuuming. Fibro gets you really weak. makes tendons swell, fibroid lumps (arms). I did sweep last week for first time in months. Even light vacuums…...Netgrrl, you agree? too heavy for 1 arm??

@faye The vibration travels up my arms & sets my whole body screaming. I have trouble with extended car trips too, especially if I’m the passenger.

@jazmina88 I can use a handheld vac so long as I’m quick. But it’s not really the weight, it’s the vibration.

oh gosh…..i’m not loving the bed with the massaging fingers…..it tripped on the other nite. I turned it off quick. Now i know why.

And I do avoid the car now. :( Joy, oh joy,

I dont work now. I work PT but would have to do 3 weeks FT training to go back. I’d never make it. and lose my benefits. i dont think my neck would let me sit at a desk and concentrate for 8 hours for a single day anyhow. Am i being a baby?

The pain & discomfort is real, my guess is no, you’re not being a baby. That’s the trouble with conditions that are essentially invisible to everyone else. We tend to doubt ourselves. I love working in front of my computer, but I know what you mean about the discomfort. I have to stretch often & occassionally use a microwave heat pack across my head & shoulders.

My rheumy says I still have too much passive pain vs active pain. But if I can stay engaged in my activities I can usually keep it in the background.

Nights to me are the worst bc there’s nothing to distract me & every ache, pain & spasm is there to remind me it serves no useful purpose except to keep me awake.

I was diagnosed in 1992. I thought it was residual pain from back surgery 4 years earlier. But, my hands were the key to my doctor. Just touching the fatty part of my thumb was not something I wanted to happen. It is like dropping a sliver thin piece of soap on your foot. One would think a new bar of soap just hit. It would raise a red welt, hurt like hell, and go away by the time you were dressing. It is a very strange pain when an accident happens. However, there are days, when getting out of bed, is about all you can handle. I found that lyrica and or pain pills do not help. I also notice (unfortunately) that a glass or two of wine will make it worse.
I call my plan of attack, the same as my other issues, working through it. After all I am in my 60’s. It’s not always possible, but there is always the possibility. It is, what it is. It can also be inherited. My mother had it, I have it, my 3 sisters have it, and my son is starting to experience it. We were all diagnosed by different doctors. It does effect everyone in the house, but it is our job to try to keep that at a minimum. Yeah right. Water therapy is suppose to be very good. Weightless exercise.

Swimming & water “jogging” or walking in water is one oft favorite exercises, but I closed my Y membership recently & I haven’t found a new place. I used to go to water aerobics until they changed class times & it interfered with work.

I’m a slow swimmer but I found swimming laps was great.

And then there are those days. You couldn’t swim a stroke. You wonder, how am I going to deal today? You lay there thinking of what you can do to at least accomplish something. Around 10am you haul your aching body up and try to do something. Wish I had one of those little lap pools in my yard.

@jazmina88 I have a feeling we will always be back at square one. So it is up to us to handle it somehow. I use to go to doctors that would say things like “Oh it’s just old lady syndrome” I was only in my 40’s for heaven sakes. Did you experience that as well?

I am. 48. I have days where th4 dog gets fed and I find something to eat and that is it. especially with a lyrica hangover. They started me at 50 mg 3 x day. he gave up quick on that day he looked like he wanted to play golf. He’s the best in town. holistic. I need 25 once a day, maybe. I’m too tired too fight sometimes.

nights are horrible. and I cant decide if shoulder surgery will help again. the arm – torn bicep and massive fibroid system in right arm is causing the arm not to work, makin the shoulder worse and the tendon in shoulder is swollen. I have lymph issues and swollen. fluid. That is not fibro related is it?

My sister is sick…I need to tell her more about the disease.

I was lucky in that the 1st rheumatologist I saw firmly believed that fibro was very real. We went through all the tests to rule out everything else of course, but he never made me feel it was “all in my head” the way doctors used to do.

I’m grateful it wasn’t so many other things… I feared rheumatoid arthritis bc it runs in my family.
He told me once having fibro was a good news/bad news joke. The good news is, it won’t kill you. The bad news is, it won’t kill you.

@jazmina88 I have days like that too. Like @Rangie said, it is what it is. That dosage of Lyrica isn’t very high, btw. Can his nurse practitioner talk to you about changing dosage when he’s not available? It’s a difficult drug to find the right dosage for, in my experience, and each time the dosage is changed there’s a period of adjustment to side effects all over again.

It doesn’t sound like what’s going on with your arm is fibro related but matter how much I’ve read, I’m no expert except with what’s gone on with me.

@jazmina88 I can’t speak to the shoulder issue. I fell off of a ladder about 4 years ago and broke my shoulder and I am still having pain so bad, I can’t sleep. It worse at night. I had a cortisone shot in it and it didn’t help at all. I am however going to an orthopedic man in 2 weeks to see what he can do. I have one of those ten’s units, and turn it up so high my shoulder jumps all over the place, but I can’t feel the pain. I don’t have a problem with my right shoulder, so I don’t think it is a Fibro issue.

Oh, my gosh. Wait until you get to be my age. There are so many things to contend with, it is like making a pot of stew. You just throw all the pain in one pot and let it meld together. Now you only have to deal with one pain instead of a bunch. hehe
I know it is not funny, but what else can we do, but laugh. If I wake up without pain, then I know I am dead. hehe. sorry, but that is all I know how to do in dealing with this aging plus pain stuff.

I’m 21 years old and I was just diagnosed 4 months ago, but I have been exhibiting symptoms for several years.
My mother also has fibromyalgia, so I wasn’t completely shocked when I was also diagnosed. This disease has affected our home so much, from household chores, keeping a regular schedule, all of it.
When I was diagnosed I was put on the drug Cymbalta. I was already suffering from depression and I noticed when i started taking the medicine that my emotional state improved so much. I felt so good! I was happy and productive for the first time in a year. And then slowly it would fade, so I would go back to the doctor and they would up the dose. Eventually, and I don’t know exactly how it happened, I was trying to hurt myself. It snuck up on me, and I was away at college, away from everyone who knew me. So no one else noticed the severe change. It got so bad that I had to medically withdrawal from college and come home. They took me off Cymbalta and I suffered through two weeks of painful, nerve-wracking withdrawal. And now I am in the process of trying to figure out how to control my pain and my emotions. Naturally, I am very hesitant about trying any more prescriptions.
Some days are better than others, some days I am fine, I feel happy and free from pain; other days I feel hopeless and I am in so much pain that I can’t concentrate on anything else. These are the days that I am bitter and angry, I don’t understand why these horrible things have to happen to people.
Luckily I have a wonderful support system, my family has been so concerned and have done nothing but try to help me through. My boyfriend is the most understanding and caring man I could ever ask for. I was so afraid to tell him the truth about my diagnosis, so afraid that he would leave me because it was too hard. I worry about our future, I see how my mother is on a daily basis, and I see how bad this disease can get and I just dread that happening to me. But he has stuck by me, done everything he can to be helpful and understanding, and that has made all the difference.

I’m 42 years old, and have been dealing with fibro for over 13 years. I spent several years undiagnosed, just barely getting through my days while raising three young children (I had 3 kids in 4 years). It was all I could do to get them fed 3 times a day. I essentially laid down on the couch all day, and did what I absolutely had to do and nothing more. It was awful. Caused lots of problems in my marriage, too.

When I was diagnosed, I was devastated. I didn’t even believe in Fibromyalgia… how could I have it??? Well, I’m a believer now, let me tell you. Everything about my fibro is a balancing act. How much can I do today? How much will I pay for over-doing it? (The answer used to be: 3 days down for one day of over-exertion.) I also have mild kidney disease, which should prevent me from taking NSAIDs for pain… but I do anyway. My doc and I decided that quality of life is more important than quantity of life. What good is living an extra 5 years if every moment is unbearable? So, I take Diclofenac twice a day, every day. It’s a strong NSAID, and has allowed me to function in a minimal way again. I’m still always in pain, but it’s a bearable pain.

About a year ago, we added Lyrica to the mix. After the first two days it no longer made me sleepy. (I have a very strong resistance to narcotics though… I can take morphine and still be up walking around. So my experience w/ Lyrica may not be typical.) At first, I didn’t think it was doing anything for me… my pain didn’t improve at all. I was just about ready to quit the drug when I over-did it again. Instead of being down for 3 days, I was only down one. I decided to stay on the Lyrica and see what happened. Sure enough, every time I go overboard with activity, I’m only out of commission for one day instead of the three it used to be. I credit the Lyrica for that, as there is no other explanation.

Back to how it has affected my life: Even with all the drugs, I am in constant pain. I stretch frequently, and have my (second) husband pull on my arms and legs to release the tension in the tendons. I massage my arms and hands all day long, using enough pressure to hurt because it feels better afterward. I attempted to go back to work after years of being a stay-at-home mom for 13 years. Six months into my new job, I was missing a minimum of one day a week due to the pain. It was unsustainable. If I chop vegetables or slice cheese or wash dishes, my hands are killing me within minutes. Vacuuming just about kills me. Ditto for big shopping trips. I frequently only put away perishable groceries, leaving the rest on the kitchen table for later. When I overdo the activity, I must sleep. For a looong time. My kids have definitely suffered along with me. I am mostly a bump on a log. :( On an ordinary day, I do what I can while in bearable pain. It gets unbearable again when I overdo it, when I am overly stressed, and sometimes for no apparent reason at all.

In the last 13 years, I can count on one hand the number of days I’ve been pain free. When they happen, we try to make the most of it. I have tickle fights with the kids, skip around the house, and am so happy I’m just about bursting with it. Of course, I pay for it later, but I’ll be damned if I’m not going to enjoy those rare moments without pain!

Wow. Sorry this is so long!