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New here, need advise or suggestions please
5 Replies
dkarssen79 - December 1

Hi! Although I am not newly diagnosed I am new here. I'm 30 years old and was diagnosed about 2 years ago, although my symptoms started 4 1/2 years ago after the birth of my first daughter. I have two daughters, 2 and 4. Each time I have a flare up they seem to get worse and worse with new symptoms. When I'm not in a flare up I have what I would consider mild to moderate symptoms.

I guess I'm just looking for some advise on how to help my family understand what is going on. I try to explain it to my husband but he doesn't seem to completely understand, although he has done some research on his own and I think he's learning more about fibro. As for the children, I don't really know how to explain it in a way they will understand. They want to play and rough house and be loud like kids do from time to time and there are days that I really can not tolerate being climbed on or the noise. They are so young I try to just tolerate it when I can and on the days it is really really bad I tell them mommy does not feel well, although that usually does not do much good.

Just looking for different ideas or advise as to how any of you have handled this. My girls are very energetic and there are days I can hardly get off the couch or get out of bed, let alone keep up with them. I would really appreciate any ideas or suggestions!

Thank you,


brooksidefarm - December 1

We tell my 5 year old that I have boo boos on the inside that we cannot see and to be gentle. It is about all we can say to him. My huband really is sympathetic - the research he did helped. Pray. Remember that they love you and get frustrated too.


Fantod - December 1

Hello dkarssen79 and welcome to the forum!

Getting family and friends to understand Fibromyalgia (FMS) is difficult. A broken leg is something everyone immediately grasps while the plethora of symptoms caused by FMS are not. I think most people can not wrap their minds around the type and range of discomfort FMS patients experience on a daily basis.

FMS is a disorder of the central nervous system that causes widespread chronic pain and other "perks." It is recognised by the Center for Disease Control and the National Arthitis Foundation. There is no cure but it can be managed with prescribed medication and careful attention to diet. You should take some time to throughly read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power.

Your husband, family members and friends need to get on board. You could share this forum with them. Or, using the "search" function on the National Arthitis Foundation website send them a link to the information on FMS. You could also go to and order "Fibromyalgia for Dummies" which is pretty user friendly. Have you considered taking your husband to a doctor's appointment so he can hear firsthand what you experience and how the doctor wants to treat your symptoms.

Part of the reason that you are so achey and sore is a lack of deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which quickly becomes a vicious circle.

It is not uncommon for people with FMS to be sensitive to noise. Personally, I would rather cut off both of my arms with a butter knife than tolerate loud noise of any kind. Unfortunately, kids are kids and this is what they do. Have you thought about damping the noise with some loose ear plugs? Enough to cut it down but not enough so you can quickly determine if they are getting into trouble or need help. Perhaps there is a story hour at your local bookstore or library that would entertain them while you relax. Have you thought about sending them to daycare even for a half day a couple days a week so you can have a break?

Is your family close by? Could you ask family and/or friends to help you in rotation so no one person feels put upon? You are chronically ill and rest is essential when dealing with FMS. As you know, flare ups are very unpleasant and even more so when you are not getting proper rest and keeping your stress level under control.

I hope that my comments are helpful to you in aome way. Take care and keep in touch.


dkarssen79 - December 2

Thanks for the suggestions! I never even thought about the ear plugs, that is an excellent idea! That's also a great idea about the boo boos. When I tell them mommy's arms or legs or whatever hurts they look at them as if looking for a boo boo, but since there is nothing there they don't seem to get it, but I bet saying it that way would make a huge difference in their understanding.

Unfortunately I work full time during the week and my husband works retail so he has crazy hours sometimes and I am home by myself with the girls. I guess I'm pretty stubborn and feel like when I'm not at work the girls should be with me. But I do think maybe it's a good idea to at least once a week maybe have one of my sisters watch the girls for a couple of hours so I can relax. I work 40 hours during the week and we have been having 5-6 hours of overtime on saturdays for a while, which I can tell is taking a toll on me. I do have family that is very close. My mom actually watches the girls while I am at work, but I also have 4 sisters and a brother that are old enough to watch the girls(I have one brother who is only 9, what an age difference lol). All of my sisters and my mom live within 15 minutes of me. I just need to accept the fact that a couple of hours one evening a week with one of their aunts is not going to hurt them and will do me a world of good!

As far as my husband, I am not good at communicating with him how I am feeling. I've never really tried to explain fibro to him and just kept it to myself when I wasn't feeling well. With this flare up being one of the worst I've had I decided he needed to understand what was going on. So I explained fibro to him as much as I could as well as how I am feeling day to day. He has also started researching it on his own now, so he's getting a better understanding.

Thanks again for the suggestions and info! I really appreciate it!


Canada17 - December 2


Fantod made all the points I would have made.

To help with your stress levels you might consider meditation: relaxation yoga or even tai chi. It is so important for us to stay in shape as our nimbleness will help us deal with flare-ups better and enable us to do our daily tasks with less pain.

I have a daughter who is almost three. So I know exactly how you feel when you say you wish you could keep up with you kids and that they are noisy being kids and have a hard time understanding.

My daughter is tough as nails and so is my husband. He knows what FMS is and wants to understand but it is hard for him to grasp the fact that even waking up in the morning is sometimes a chore. The hardest thing is trying to explain to him that even though I've been in bed asleep for eight hours I am still sore and tired because I didn't get the right kind of sleep. I'm only 26 so it scares him that I am so young and in the amount of pain I am.

Just remember, you are never alone with your FMS, we are all in this boat together. As much as we rarely have spare energy, we need to be activists for FM. We need to bring awareness to this awesome disease because if not it will take longer to development real treatments and maybe even a cure.

I wish you luck in finding peace with your FM.


axxie - December 3

I feel for you, and the pain sometimes can be unbearable, kids just want to be kids, it's hard for them to understand.

Noise affect fibro people so do bright lights, and stress, where the kids want to play, you have to let them play, so you take out those earplugs and you wear them, get the kids some shades to wear in the house and pretend you are in a sunshine state.

Have a young sitter that you can hire for few hours where the young sitter won't mind, playing with them outside.

Ask your family if they would like to make extra money by getting them to take care of kids at your house while you rest for few hours.

It's a good way for kids to run wild, while you do whatever you need to do to help yourself get better.

If there's a water park close by, buy them each a pass and pack them a lunch and send them out to play in the water park, two kids, two teen to take care of them. It's money well worth it.



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