my mom has fibromyalgia and I am soooo frustrated...any advice?

My mom was diagnosed several years ago with FM, from the time I was a little girl I can remember watching my mom, push herself, just so she could finish, simple everyday tasks like cleaning. I can also remember watching her sit on the couch for hours because of a muscle spasm or headache. I was pretty fortunate in that I had a lot of family and friends around that helped to give me a fairly normal childhood, it wasn't till I was older that I really started to understand just how frail my mother was.

Here is the problem, over the last several years my mother's health has continued to detiorate.  This detioration is evedent in all aspects of her life. She spends the majority of her time sleeping or watching TV, she is too tired to do anything social, the house is a disaster, I try to get her to go out or get involved in something, but she never accepts my offers. She talks about how depressed she is that she can't do more and how much pain she is in, etc.  I try not to get angry, but sometimes I just can't help it.  I know that she has a disease and I don't believe that she is making it up, But I just can't believe that it is causing everything. I mean no wonder she feels so bad, I would too if I ate processed carbs and drank pop all day for energy. Or slept on the couch all day. I feel torn between wanting to be sensitive and just wanting to yell at her to get off of her butt and listen to all the advice that people have been giving her for years, Workout, Make Friends, Eat Healthier.  Maybe you won't  be a 100%, But anything would be an improvement from the life that you have know.

I love my mom so much and I feel so helpless.  For those of you that have FM what have been your experiences? am I wrong. could really be as bad as she says? what should I do?

I don't know if there's much you can do.   But if she wants to make a change, I'd reccommend: http://www.flylady.net/.  Flylady is about reducing clutter & making your life easier, 15 minutes at a time.  Part of the reducing clutter is focused on losing "body clutter."   I've seen several letters from people with FM that found this site useful.

I should warn you that there is a strong religious component to it, but as a dedicated agnostic I've never found it offensive.

I have FM and CFS which usually accompanies FM.  Yes, every day is a struggle, but you just do it because you have to.  I had to go part-time at work because of the pain and exhaustion.  I'm hoping that if I get this weight off that I will have more energy and less pain, but who knows.  Just let your mom know that you love her and that you believe in her illness.  That is one of our biggest frustrations, that people don't believe in the illness.  I hope you can get through this with your mom.  She needs you.  My Dr. wants me to do stretching exercises to help with the muscle pain, it helps somewhat, maybe it can help your mom too.

Best of luck to you and your mom.

One pain specialist (who has a specific emphasis on FM) that gave us a lecture last year said that up to 1/3 of fibromyalgia patients respond better to cognitive and behavioral therapy with a psychologist/psychiatrist as opposed to traditional pain therapy. Of course, others do not.

Its hard because the science world does not understand FM very well yet. There are many theories, but no definitive cause and most believe that the cause/triggers for each person could be very different.

Does your mother see a therapist in addition to her general practitioner or pain specialist? If not, it might be something you could discuss with her. In general, it may be helpful to have a multidisciplinary approach to helping her out.

It sounds like you are a very loving daughter who recognizes how hard this is for your mom and you sound like you very well know that she is in legitimate pain. I think that is great, and just try your best not to let it frustrate you too much.

P.S. I am a sibling of someone who suffers from FM, so I know how it can be frustrating at times. You want to help them so bad when they are going through rough patches, but often verbal and emotional support is all you can personally give. Good luck to you!

Thank you all for your replies.

It looks like my only option is going to be just to stand by her and support her as best I can. 

Because money is really tight she hasn't been able to recieve treatment for several years. When she was first diagnosed we had a friend who was a chiropracter/physical therapist and he put her on a program where she would lift weights four days a week followed by a full body message, It was the only time that I have seen my mother operate normally, something about working out the lactic acid. I wish I could afford to pay for something like that again...:( 

Wow....I feel like you took the words right out of my mouth. My mom also has fibromyalgia and she too is in a very bad routine of sleeping all day on the couch and eating junk food. I uderstand what you mean about alternating between trying to be compassionate and getting angry. I know she really has something wrong with her and that she is in pain. I believe that, but what I don't understand is why my mom will not try to eat better or quit smoking. Seems like just those two little things could make her feel so much better!

I don't think there is anything I can do for her, other than listen to her when she is upset, which in turn makes me very upset as well. Just talked to her last night and today I am still really upset.

I understand what you are going through. It is very hard to see them like this. If you ever want to talk via email, my address is kellir78@yahoo.com.

Good luck to you and your mom! 

((((HUGS))))

Hi,

I was diagnosed with FMS in January.   It took almost a year to get a diagnosis as the symptoms just seemed to come in spurts.   It wasn't until my body pretty much collapsed in November that I really made an effort to find out what was wrong.

FM takes a real toll on a person's life.  Depression and anxiety are just two very common symptoms.   My doctor recommended the following site to us:

www.fibromyalgiatreatment.com

I have just recently started on the guaifenesin protocol.   There are two people that live in my area that have been on it for a while and swear by it. 

There is a lot of information on that site, and a link to a support group.   Here is a link to a great letter to family and friends of people suffering from FM. 

http://fibromyalgiatreatment.com/board/viewto pic.php?t=150

You will have a much better understanding of the disease after reading this. 

I'd be happy to share some of the information I have gathered over the last several months with you and your mom.  

Good luck!

So the other two posts about their moms having fibro, trust me...I know JUST how it is...

it's been about four years since my mom was diagnosed, and I honestly am losing my patience with it. She missed pretty much my whole high school experience, didn't make it to one cheerleading competition, actually one..my last one. Suprisingly made it to senior prom pictures but was acting weird, and had to leave my graduation last year early becuase of the pain. Before she was able to somewhat control her feelings, however now, it's pretty much impossible. She's moody, she sits on the couch ALL DAY eating or sleeping, or she's in the garage sleeping. I often come home to see the garage cracked open and her asleep on the laptop. It's not that I dont care, but I dont have the patience for her anymore. I work with kids and i feel like im coming home having to watch after my mom more than the 2 year olds at my work.
I'm past trying to get her to go do things with me, but then she gets SO jealous when I go out with my boyfriends parents. But She's so moody she'll call me a bitch for trying to wake her up for her doctors appt. she's already running about 30 min. behind for.

I really dont know what to do anymore. In about a year I should be transfering to college, and my dads the best thing to ever happen to her, he does SO SO SO much for her, but i dont want to see my father or mother live their lives this way. How are you guys dealing with this? Becuase I know the my sister and I, along with everyone else having a parent w/Fibro, has so much pressure put on them...

I have FM and this thread is absolutely terrifying to me! I dont want to end up like you are describing, on a couch w/ my life falling apart around me!

My doc (specialist in FM) says that scientist have recently concluded that FM is a disorder in the pain center in the brain. so while the sensation of pain is very real the problem is actually in a the brain- which is overreactive to pain- and not in the body. she says  that b/c of this FM is different than other pain diseases (arthritis, etc.) which you have to listen to and respect so that you dont hurt yourself. w/ FM you just have to push through it- get active anyway. according to my dr. the pain that you feel wont usually result in injury and you dont have to worry that you are damaging yourself.

that said, i have never heard anybody else say anything lik ethat so im not sure...

i have found alot of relief through acupuncture, regular swimming, physical therapy, and a healthful diet. oh and massages!

Well, i have maybe a different attitude to your problem. I've had FMS for many, many years, and tried just about everything. I also have chronic major depression, which doesn't help because I, too, want to spend every day on the couch, hiding from the world.

Exercise WILL help, even if only walking. It will also help your mom's depression, which I believe both of you are seeing. Meds and therapy can help. PHysical therapy can help. Swimming or water aerobics are the best. The guifenesin treatment helped me a lot for a long time. There are a TON of things that can help, and each person has to find them, and then implement them into their lives.

Kimo, your doc is right, exercise won't injure you, only temporarily increase pain and fatigue. It should be done with the help of someone who knows how to increase it, and deal with the aftermath. It will really help in the long run. If you can get physical therapy a couple of time as week it will help you be able to increas your exercise without as much pain. They taught my husband how to find the FMS knots and break them up and it really helped.

Pain meds aren't out of the question, even though there are variously different opinions on that front. I've been on the same dose of tylenol with codiene for almost 20 years, and it works fine except for breakthrough pain. Then I increase my relaxation techniques or get some physical therapy.

The thing that helped me most was going to a real pain clinic who could measure everything. I found that I wasn't applying the non drug pain management that I'd been taught early enough in the pain cycle. It made a huge difference. Now I pay attention to my pain and heed the warning. I take my meds on time, not waiting until it's already too bad.

kmatuszak: I've known LOTS of people with FMS and that kind of mood is not a normal part of it. Most of us are just regular people that keep trying and appreciate the support we get. I think she has something else going on, either severe depression or some other condion that might need to be addressed. Severe pain and hopelessness can really lead to serious depression if it goes on long enough. There are lots of places that use a sliding scale or provide free couseling if she'll go.

Unfortunately, some people like to use their condition to give up and opt out of being responsible. It sounds like maybe that has happened in a couple of these posts. If you can't get help for your mom, or she refuses to accept it and try to help herself, you will have to learn to disengage from her at an emotional level. That doesn't mean you can't be supportive, but perhaps getting some therapy, or finding a caregivers support group would be helpful for you. The anger you are experiencing will hurt you over time, and hurt your relationships with others.

I've been part of several FMS support groups over the hears and have seen this happen before. It's the rest of the family that actually suffers more than the FMS person. Please get some help for yourself, you're important, too.

I, too, will be glad to share my knowledge and experience anytime. My email address in in my profile if anyone wants to talk.

To all of you with FMS (((((HUGS)))).  I know what it is like to be diagnosed with this terrible and life altering disorder.  Unfortunately mine didn't stay there because it wasn't FM to begin with.  But, I can understand completely the mind-numbing fatigue and the emotional and physical pain of the disease. 

swearimn-  Your mother is so lucky to have a child(?) of hers around that cares as much as you seem to.  As someone who was diagnosed with FMS for 5 years before we found the "real" problem, I can truly empathize with both you and your mother.  I understand the frustration of looking at a house that is a shambles, of being TTTC- too tired to care.  Depression and this disease go hand in hand. I know it's difficult, but is she seeing someone on the mental health side of this disease?  Another thing that may help is having her rheumatologist or PCP (whoever she's seeing to treat this disorder) to refer her to an occupational therapist.  I saw one despite being on disability, and she was wonderful.  She showed me how to make ADL's (activities of daily living) easier.  Cooking, cleaning, dressing, bathing, etc.  She got me a shower chair.  All that.  Got me onto a T'ai Chi program to increase flexibility and lift my spirits.  Wonderful.  I couldn't reccomend a good Occupational Therapist more highly.

A great book to read is:
When Muscle Pain Won't Go Away
Gail Backstrom with Dr. Bernard R. Rubin

Hope all goes well,
Von

I was in pain and felt exhausted all the time, from the moment I got out of bed.  I was also mind numbingly depressed.  Then, I and a friend of mine who I ate with frequently were both diagnozed with FM.  Turns out that a diet controlling yeast and exercise completely elminated the symptons for me and yet my friend had food allergies that she had to address such as night shades - potatoes, onions etc.  I would suggest any one with FM try to eliminate yeast from their diet as there is more and more evidence suggesting that a yeast overgrowth can trigger this condition.   Also, have yourself tested for food allergies.  Yes, it can be that simple and I hope it will be for most of you. 

I posted earlier, in April, and since starting my new lifestyle of eating better, I have lost 55 pounds.  In the last few weeks, I have quit taking my muscle relaxer and my asthma pill.  I still take my hydrocodone (1/2 of a 750, twice a day) and I feel great!  Losing the weight has helped tremendously.  I still have a ways to go, but I WILL get there.  The chronic fatigue hasn't eased up, but I'm almost used to not being a good sleeper. 

When I was first diagnosed, I too pretty much gave up life as I knew it.  We quit camping and sold our camper because I was in too much pain to sleep in the campers bed.  I spent ALOT of my time sitting at the computer and feeling sorry for myself.  FM is a real condition, but getting any extra weight off and light exercise really helps!  Be patient, your moms will find a reason to begin their lives anew.