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Any moms out there with children with FM?
23 Replies
llcsmom - June 3

It's been awhile since I've checked in here. I remember seeing a few posts either by teenagers or by moms with children with FM.

I am going through a phase where I am getting exhausted helping my daughter with FM. she is 11. She is having a bout of nausea again (which I guess can be a "normal" problem with FM),so on top of the pain and fatigue--she has nausea!! Arrgghhh! This happened to her in November, too. Then the nausea just seemed to let up after a few weeks. Does anyone else have nausea like this???

I feel so bad for her, yet, I hate that she is misssing so much school. She makes it for 1/2 days most of the week. Thank goodness summer vacation is almost here. We have accomodations set up for her at school, but some of her teachers are still a bit hard on her about missing work, etc. We will have a more organized plan for school next year, at least.
Anyways, just venting and seeing if anyone replies that has a child or is a teen themselves, and how you are coping with all of this?
Thanks,
Dawn

 

momtofour - June 7

Dawn, what you described sounds like my 14 year old daughter. She missed 43 days of school this past year. I get so frustrated with the endless things that go wrong with her but try to support her and not show her my frustration. She rarely complains about anything and has always been very tough so when she does complain I take it very seriously. She just started having chest pains with shortness of breath too. I just found on this site that that can be from the fibro as well. She has had so many stomach aches, ear aches, headaches, body aches plus fatigue, irritabilty, menstrual problems, inability to walk for very long (around the store is too much). I feel terrible for her! But, I feel that God is allowing this in her life for a reason only He knows right now, that is my comfort and I tell her that as well. I hope to hear back from you! Diana

 

llcsmom - June 11

Hi Diana,
My daughter tends to let it all hang out with me--in terms of complaining about the pain and everything else associated with the fibro. She tends to put on a happier face with other people. (Which is fine--I'd rather have her grumpy and whining with me than with some of the other people in her life) You mentioned menstrual problems...just today is the start of another period and she has so much cramping with it! She was starting to feel alot of nausea with it too. 600mg of ibuprofen did nothing for the pain (she is adult sized at 11 so this is a normal dose for her) Today is the last day of school so she went, but was in alot of pain with the cramping. Does your daughter have that or something else with her periods? Is she in middle school or high school? What kind of doctors/medical people do you go to?
Lauren goes to a pediatric pain clinic, regular pediatricain, sometimes a physical therapist, a counselor, and sometimes a massage therapist.
Do you have an IEP or a 504 plan set up for her at school? I am trying to avoid having Lauren home bound--because I feel the socialization at school is important, so she has "accomodations" at school--it is almost a 504 plan, but she has missed alot of class time--lectures, discussions, etc in one or 2 classes--because she tends to go in (which is approved) later in the mornings-it is way to hard for her to be there and alert at 7:25 am most of the time! She usually sleeps about 10 hours at least on a good day and much more than that on a bad day (has slept up to 18-20 hours a few days this year). How about your daughter--you mentioned fatigue, too?
[email protected]
Thanks for your note. I hope the summer brings less pain to your house!
Dawn

 

aBeserra - April 9

I am a teen myself. 16 years old, and I've been struggling with symptoms for over a year and been a diagnosed patient for 7 months. I hate to be the negative one, but it has changed my life, and not for the better. I had to miss over 2 weeks straight of school at one point. I have gone from 110lbs down to 93lbs, with no hopes of gaining. The hardest part though for a child/teen with FM, is the social life. I was a runner, and now I can barely walk. I would hang with my friends all the time and be happy out and living, now i'm either home sick or home because it hurts to bad to move. So the best thing, at least for me, that a mother/father can do is just be there and listen. My mom doesnt seem to fully understand the amount of pain FM puts me through. I do not want her sympathy at all, I just wish she knew that walking the dog around the block is a 10x greater task. So talk to your daughter, and see what she needs from you. Im sorry you have to go through this, but think of the bright side, you and her will be closer than ever.

 

llcsmom - April 9

Hi aBserra,

I just posted a comment to your question in the general discussion area.
Thanks for your response to my older post.

Yes, we also, are not very optimistic about my daughter's future with this fibromyalgia nightmare!
With my daughter being younger when this started, I have been very involved in her fibro life on a daily and sometimes hourly basis. I have researched fibro thoroughly, so I understand what she is going through.

If you want to communicate with her, let us know, she would love to talk to someone close to her age, I'm sure.
Thanks,
Dawn

 

tinker1 - April 21

Hi,

My daughter is 13 and finally we received a diagnosis for her.Unfortunately the diagnosis is juvenile fibromyalgia. We were sent to a pediatric rhuematoligist, only after seeing several other specialists. So after everything else that could possibly be causing her pain was ruled out, the final diagnosis is JFM. Now we begin physical therapy 2 to 3 times a week, along with sessions with a psychologist to work on biofeedback with her and also she will see a Dr. for accupressure, also she will go to a sleep clinic. If these things do not help enough the docs will then possibly give her medications to help treat her symptoms. To all the other Moms and or Dads that have children with JFM, can you please tell me what is being done for your child and if it is helping your child to feel better? Any input will be very much appreciated. My daughter seems to be getting worse each day. We begin all of the therapy next week, so I do have some hope. If anyone has had any success with any type of treatment please let me know. This is all new to us and I am doing everything I possibly can to get my child back to being the happy, care free girl that she was less than a year ago.

Thanks so much,
Julia

 

llcsmom - April 22

Hi Julia,

As you can see from these postings, I have been trying to make contacts, too, since we haven't run into anyone locally in the same boat. My daughter's doctor does not currently have any other patients with fibro. If you read my other posts, you will find my email--please feel free to contact me. My daughter is 12 1/2 and we have been dealing with this for about 2 1/2 years now. So, I can help you out with what we have tried. Keep in mind that everyone has different reactions to different treatments, but so far we have not found anything that helps in a big way. There are some things that help a little bit. For my daughter that is things like--arthritis type topical creams, aromatherapy oils, warm baths, and summers (both off of school and the warm weather = less stress and more moving around and activities like bike riding and swimming). It is definitely life altering and affects the whole family and school life.
You mentioned accupressure and sleep clinic--those are 2 things we have not tried yet. She tried accupuncture, but after a few months it became too painful for her, so she quit. So, accupressure is a good idea for your daughter to try. Mine has had more insomnia issues lately, so if your daughter has that problem, it is a good idea to go to a sleep clinic--I have thought about getting her Dr. to order that for her.
Let me know if I or my daughter can help you guys out anymore!
Dawn

 

tinker1 - April 25

Hi Dawn, my daughter has been prescribed Lyrica, just yesterday, by a pediatric pain doctor. This was prescribed for pain and to help improve the quality of her sleep. Next we have an appointment with a pediatric psychologist, and also she will be going to physical therapy 3 times a week.I am hoping and praying all of these things will help her.Also each day she has to do some type of aerobic exercise such as brisk walking, swimming, bike riding, ect. This helps kids with JFS very much.Caity has to do some type of aerobic exercise each day. I just sent her out to walk briskly for 15 minutes, and each day I will gradually up her time.Caity is taking magnesium 250 mg, St Johns Wort 0.3, and 5HTP, 1of each 3 times a day. She has had 2 good days of feeling good which have been the past 2 days. Up until then she was getting worse each day. This all started more than a year ago when she was only 12. I have been told by the pediatric psychologists that most likely some type of trauma caused this and she could not cope with it or rather did not have the correct coping skills. I now know what triggered the fibro. She had always attended a private christian school along with her older sister. I had to take her out of the school because I could no longer afford the tuition. The school she attended after that had tons of bullies. Some days they wanted to be friends and then the next day they were ccruel to Caity. This lasted for about a year or so. I tried talking to, meeting with the principal several times, the school councilor, she was a joke. She was actually a very unfeeling person. So after several months of trying to get the school to do something about the bullies we were told a different school would be better for Caity. So rather than the school taking care of the problem they made it worse. The school administration did what was easiest for them to do rather than doing the right thing. They wanted us to go away, 2 people, rather than having to deal with the group of bullies.It is so sad that a school will not help your child when a child actually gets up the courage to come forward and talk to them about the bullies. The school encourages this but if you do it they say it is not a big deal and you are making a big deal out of it. They give the child no support and make the child feel worse for doing what they encourage the children to do. Caity had always been very outgoing, always had a smile on her face, she does what she is told, she makes good grades. I can not wait to see that child again. I have some hope now. Just 2 weeks ago I took her to the emergency room because her pain was so bad she could not stop crying and before then her pain was horrible all day everyday. The pain was in her knees, ankles, hands, legs, and now horrible headaches I have hope now at least. Write back and let me know how you are doing.

All the best to you,
Julia

 

llcsmom - April 26

Hi Julia,

Sounds like you are doing most of the things that we should and can be trying to help our daughters with their pain and fatigue.I am sorry that Caity had to go through such a bad school/bully experience. I think we have so much to discuss. Please try to contact me--look at the comment that I made on June 11th for that info that you would need.

I'm very interested to see what you and Caity think of the Lyrica. That's been in the back of my mind, but I think there were some unpleasant side effects, so I haven't gone there yet with Lauren. I will consider it though since she has had an awful 2 months. We are also thinking of Cymbalta (she is currently taking Prozac low dose, daily, plus a few other meds/supplements). We are in WI. Lauren and I would be happy to communicate with you and Caity.
Dawn

 

tinker1 - May 7

Hello again Dawn. The Lyrica is helping Caity. She is taking it 1 time a day, at night right before she goes to bed. So far no side effects other than a slight increase in appetite. So I will try to make sure she is not over eating. She has had several days without pain and she is sleeping better, not tossing and turning and moving around in her sleep like she was before taking the Lyrica. We began physical therapy again this past week and hopefully by next week she will begin her sessions with the psychologists and learn about biofeedback. Before taking the Lyrica, each day Caity was getting worse, she woke up tired, she was getting depressed because of the constant pain she was having and not being able to have any fun with her friends because she never felt well enough to do anything. I am making sure she is exercising each day, cardio for at least 20 minutes at this time and gradually build up to at least 1 hour daily. I am hoping that the Lyrica continues to work, if it does not continue to help Caity, then the next option we would have is to add an antidepressant to take along with the Lyrica, but that will only be an option if the Lyrica stops working as well as it is now. So I am hoping the Lyrica continues to work for her. The pediatric pain doctors - specialists in my area think using Lyrica first, before trying antidepressants on kids with JFS is the best way to treat JFS. Let me know how you are doing and if your daughter is better. Caity still has pain and headaches occasionaly, but it is not all day, every day as it was before. Today her right wrist and left knee were causing her problems, but the pain was not very bad. We used therma heat packs and the pain subsided after awhile.

All the best,
Julia

 

lettuce - June 4

Hello, I'm new to this forum. Maybe someone can give me advice. My 14 year old daughter has been out of school since late Jan. Her main complaint is stomach pains, morning nausea, body aches, feelings like her ribs are poking her lungs, severe warts on her hands that refuse to leave. She sleeps 12 hours a day & the other 12 are very low keyed. She also cannot walk through the store without getting exhausted. One doctor said she has typical teenage behavior. Every few weeks she gets a sore throat, fever, flu like symptoms. One doctor said if she'd go to school, get her mind off herself she'd feel better, that was 5 years ago. Since she was a child she has not had stamina of other children. If she has too much fun for a day, she is wiped out for a couple of days after. She has been seen by 5 doctors & a psychologist who have all done as many tests as their level of expertise allows & then sent her on to someone else. They have all focused on her stomach pains & have done a huge battery of tests on her intestines, stomach, blood, scans, etc etc. Everything comes back normal but still she continues to have daily severe pain. They came to the conclusion that she is depressed & put her on Cymbalta. Is stomach pain a symptom of FM? She doesn't have diarhea or anything like that, occasional constipation. I don't know what kind of doctor to take her to from here, we feel like we are at the beginning still without any answers. Please help if you can. Thanks

 

llcsmom - September 9

Hi all,
Sorry, I am just posting again, now.

How are all the girls doing?

My daughter was diagnosed with POTS (in addition to or causing the fibro) in June which is a dysautonomia--it means that the autonomic nervous system is messed up, and she has tachycardia (fast heart rate) when she is standing. She has a lot of nasty symptoms with this disorder.
It's something to ask about since it causes so many similar symptoms as fibro and/or they are connected. (Extreme fatigue, nausea,abdominal pain, chest pain and shortness of breath, overall pain, dizziness, feeling faint, tremors, and on and on.)

She is doing okay with all of this right now, no major flare ups at least for this week!
Last test for awhile, we hope, is coming up in a few weeks--a sleep study. She has insomnia, and usually wakes up 1-3 times a night, snd sometimes stays awake for 1-2 hours.

I feel like we have to find ways to help them cope and appreciate the good days.

Dawn

 

lacie - February 19

Hello Dawn,

I am 20 years old currently and began experiencing fibro symptoms when I was 17. One day I was completely normal, and the next I could not walk. Since then I have been diagnosed with Interstitial Cystitis, dysmenorreah, rosacea, and vulvar vestibulitis (a subtype of vulvodynia), all of which seem to stem from the fibromyalgia.

It has been difficult for me to transition from 17 years of being completely normal to the terrible effects fibro takes on you. I felt so guilty having to take 2 weeks off of school, but I was literally crawling because I could not walk, and my teachers all told me I needed to stay home. Since then I made it to school if I could walk, which ended up being very harsh on me. Now that I'm in college I have the luxury of scheduling my classes only on two days a week. My teachers now are also sensitive to my health problems.

I have extreme difficulty sleeping through the night. On average I wake up every 2 hours. I have not had deep sleep since I was diagnosed. This has taken a toll on all my relationships, since it I am oftentimes cranky from lack of sleep. I also have muscle twitching which has caused me to break dishes and burn my skin on several occasions. I was originally given a few weeks worth of samples of Lyrica, which greatly helped my twitching and allowed me to sleep through the night. Unfortunately the prescription was too expensive to continue use. My general practictioner and rheumatologist would only give me the option of Lyrica, and upon begging for a less expensive option I was given a prescription for flexeril to aid in sleep.

Recently my mom found a pain management doctor that she thought I should see. He has put me on Lexapro with intentions to switch me to Savella. He says that patients who start on a consistent dose of Lexapro on average have a transition to Savella that includes significantly less of the terrible side effects patients starting Savella "cold turkey" experience. I can't say yet if this option will work for me, but I'm very hopeful.

My physical therapist advised that I not bike, since the sitting position is not optimal for my spinal pain, but I have taken up biking with a friend. I couldn't find friends willing to accompany me on walks since I am unable to run, and was desperate for companionship. Biking has turned into a wonderful outlet for me. Some days I can't get myself out of the house, or I can't bike too far, but having that fall back has really helped me. Hopefully your daughter can find some sort of mild exercise that is fun for her, because exercise really helps your spirits not dwindle.

Also, I was involved in yoga and pilates before I was diagnosed with fibromyalgia. The positions I learned in these two classes have greatly helped me as well. I do yoga/pilates positions when I wake up and before I go to sleep religiously, and during the day if I can fit it in. It helps my muscles loosen up (since I am very stiff ALWAYS, but especially in the morning!), which aids me in falling asleep! I suggest your daughter try to learn some of these positions, which a physical therapist will also be able to teach you.

I hope your daughter's condition becomes more manageable as she gets older. I'm trying the dietary restrictions I've seen on this website right now, and hopefully there will be a noticeable improvement for myself!

Best of luck,
Lacie

 

bmcgovern - February 19

llcsmom,

I don't have any kids, but i do get nauseated all the time, I have had to change what i eat to help this and it has. I am so sensitive to food. Have you changed what your daughter eats. A lot of foods can set your stomach off and make you very nauseated. I do take Stomach Curing. Its natural and you can get it at any health food store or oder it online. Its Doctor Shens Stomach Curing. Foods i have to stay away from are. Dairy, Greasy Foods, Red Meat, Sugar, Anything Acidic, Gluten. I also get chest pain and i take tylenol or Ibuprofen and use a heat pad helps a little but have to let it pass. I hope this helped. Good luck with your daughter and i hope things get better.

 

Canada17 - February 22

I am a mom but my daughter is a toddler so we have no idea yet if she will be affected by Fibro the way I was as a child. I sure hope not.

Maybe by the time it is an issue for her, there will be better treatment options, maybe even a cure. I don't want her to have to deal with this on a personal level.

 

AmandaEffy - March 1

Your daughter is lucky she has you. My Mom still makes my life hell even after being diagnosed. She says she understands but then she tells me to make all the beds when I'm too tired to disagree. I can't go to school anymore but when I could I used to spend most of the day crying. My Mom would scream at me in the morning telling me to go to school, my friends would then keep telling me to get my sh-t together and stop trying to get out of going to school and then all the teachers screaming at me to wake up/give out for incomplete homework/absense from class. Then I would text my Dad and he'd leave work and bring me home when my Mom was at work and make me hot chocolate and make a fire and strech my limbs. I wouldn't wish this illness on anyone. I want to be at College not here with my parents everyday.The hardest years are still ahead of your daughter. Please please please be there for her because more than likely you could be the only on who will actually believe her. We don't want to miss school so when a parent asks you everyday 'Will you be able to go to school tomorrow?', your kid may snap at you but that is only because that is the only thought in their minds all day. I would chop off a foot if it meant I could go back to school

 

Canada17 - March 2

AmandaEffy, you sure are in a difficult place. The way your mom treats you is unfortunate. It is nice though that your dad is understanding and there for you when you need him.

It is extremely difficult for people to understand Fibromyalgia. Heck, it's hard for me to understand it sometimes and I have lived with it everyday of my life.

Try to remember that your mom wants the best for you. She probably doesn't even realize how her treatment of you affects you and that it makes you feel worse. You need to talk to her.

Perhaps you could consider speaking with a counselor who specializes in chronic illnesses. Maybe broach the subject with your father first, as he seems more amicable, and have him there when you try to discuss it with your mom.

Having an open and honest dialogue with your parents about what your limitations are and what you need from them with only make your relationship stronger. Take it from me, hoping that things will work themselves out will only cause resentment.

 

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