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Should I let my daughter sleep alot during a "flare up"?
12 Replies
llcsmom - November 8

Has anybody heard if alot of sleep can do more harm than good for a child who is having a rough week? I know that mild exercise is good overall, and if it can be done, even during painful times. My 11 year old daughter is 4 days into her 2nd ever major "flare up" and the first time she had something like this, she did not have extreme fatigue. This time she does (she slept a total of 20 hours the other day/night!) and she has been tired the rest of the week with sleeping about 12 hours a night. So, do I let her sleep until she wakes her up on her own? Or, do I wake her up after 10-12 hours because it is better for her to be active, moving around, and getting oxygen to her muscles and tissues etc. during a "flare up" time? She was diagnosed 5 months ago at age 10, so we are new at this. We are trying the use of essential oils and accupuncture treatments. These seem to help a little.
She has had so much nausea this time, that she doesn't want to take any pain medicine.
Thanks for your input!

 

Filipa - November 27

Hi
I am only newly diagnosed myself and learning alot. I find that while I feel so fatigued and exhausted, if I do nothing and oversleep I feel worse. So I try not to nap or remain inactive. I try to do a weekly exercise class which I find once i get there and into it is quite good. It doesn't feel like it does much for me however again I notice I feel more achey if I miss a week or 2. That said, I am 31 so this may not assist with your daughter who is still a child as an adult's body is pretty different to that of a child, there also seems to be much variation between people's experience. It may be a case of a little trial and error. Good luck :)

 

islandguy - December 4

11 years old with a major flare would be similar to being hit by a mack truck at 50 miles per hour. Deep aching muscles and flu like symptoms at their maximum. It would be painful to move and to get up for her. I find that when my muscles tighten on a flare that a hot shower or bath may have some soothing effects......The nausea is something that is a concern to me. Did a hematologist diagnose your daughter with fibro? I note that you said that she is too nauseated to take any pain meds but could it be that the meds prior are giving her the nausea?
I would want to be 100% certain that she has been diagnosed properly and that there are no underlying health issues here. Whatever it is...her body is telling her to rest...but be careful of any depression symptoms. Take care and give her a gentle hug from us....

 

islandguy - December 4

sorry...that word should be Rhematologist not...hematologist.

 

llcsmom - December 13

Thanks for your responses! Yes, my daughter likes to take hot baths in the evenings, but especially in the mornings when I have to drag her out of bed for school and she is sooo tired. Filipa--she is trying a dance class once or twice a week. She will soon be trying a yoga class that focuses on breathing.
The stomach symptoms--pain sometimes, nausea other times make it hard for her. Don't know if it's FM or something else. All she has ever taken occaionally for her pain is ibuprofen or naproxen--which I know do not help her with the fibro pain, but they can help her with headaches. She will be seeing a "wholistic" M.D. soon and we will learn more about any diet changes she should consider. Islandguy-
she was diagnosed by a physician at a childrens hospital pain treatment clinic who also does accupuncture treatments on her. In our area, if a child has FM, they have probably gone to that clinic, so she has worked with a number of kids/teens with it. My daughter just started seeing a counselor who works with kids and is into the mind/body connection. We are trying essential oils to help her relax at bedtime, etc. So far, all of these "alternative"treatments help a little, but it is hard when the pain and fatigue come on strongly. We try to be cautiously optimistic! Thanks for your concern and replies!

 

lmb2 - January 16

tylenol might be more likely to work on the joint/muscle pain than ibuprofen would since tylenol is an analgesic rather than an anti-inflamatory. massages around the trigger point areas help in a lot of people also. I can't imagine having this at such a young age though, she is a tough little girl for sure!!

 

lmhs1935 - March 28

My 15 year old daughter has fibro. When she has a major flare up (She has been hospitalized for them too) I try to only let her sleep so much. Her doc and rehab clinic don't want her to sleep to much. They want her walking around and moving her muscles as much as possible. That said it is not easy because she is in so much pain. I try to move her legs and arms when she is in bed to help. (This is also very painful)

 

lgrizz86 - July 31

Hi I was diagnosed 2 years ago. I am 22 and started getting symptoms when I was 18. I have found that I feel much better when I stay active and moving. I know that during a flare up it is hard to even move, much less get out of bed. However it it worse on the body to get stiff and tight. I suggest trying to at least get her up and walk around the house or stand up long enought to take a shower. Also, when I first got diagnosed I was having alot of nausea and gastrointetional problems. I have IBS which is a common symptom of Fibromyalgia.My doctor said to takeTylenol rather than ibuprofen, advil or other asprin products because it worsens stomach problems.

 

llcsmom - August 24

Hi again,
Thanks for all of the support. My daughter has only had some minor incidences with pain since June. She has tried Tylenol numerous times, but that has no effect on her pain level at all. The nausea has pretty much disappeared. One major reason that she is feeling better this summer, I am sure, is summer vacation. She has been more active with swimming and biking. She is sleeping until she wakes up on her own--usually sleeps until 8 or 9am versus getting up for school at 630am. She has had some insomnia issues though--but that has been minor.
Now it is time to get back on a school schedule again! We will see how this year goes!

 

ibritz - August 24

Thanks for the update on your daughter. I don't know if you have, but pay attention to the weather, hot/cold, humidity, rain, etc. The weather affects me greatly. Some people are more sensitive the cold and others heat / humidity and some can predict the weather just like those with arthritis or previous broken bones. Good luck to you and your daughter. Keep us posted.

 

Fantod - November 10

With regards to the nausea, have you tried ginger? It works quite well on nausea but not everyone likes the taste. You could find lozenge form in any decent health food store. For that matter, there are some other homeopathic remedies made by Borion that come in a little blue tube. They should have one for nausea and it will taste like nothing. The pills are about the size of the head of a pin. They must be used correctly for maximum benefit. Nothing to drink, eat or teeth brushing (smoking too) a half hour before and after placing the pills under your tongue and letting them dissolve. You can find these at the health food store too. As with any homeopathic remedy, be sure you understand how to use it and the risks associated with the remedy. Take care.

 

llcsmom - November 20

Update:

Thanks for the help everyone! Well, it's a little more than a year since I posted this, and guess what? Today she is having one of those "Mom, I'm so tired, all I can do is sleep" days. She can't even think about going to school for a few hours today. She slept for 9 hours at night, got up and took a shower, then read in bed and fell asleep again. So....hopefully tomorrow will be a better day, right?

 

axxie - February 6

Hi, have you been communicating with your child about how she is feeling. Chrilden may recognize the symptoms when are described to them, and they need to know that what they are feeling is not their fault. They also need to know that something can be done about the way they feel. Ask your pediatrician for advice on ways to talk about chronic illness in an emotionally supportive manner. You must emphasize the importance of good sleep and good food. The sooner she understand this the better she can then decide if she wants to feel crummy or better. She feelings the same achy joint pain etc as adult who have FMS. But to a child's point of view she may not feel good mentally and may have no empowering power to help herself.
As school she probably is suffering from Fibrofog and other cognitive deficits. This can cause unwanted attention and being misunderstood by the teacher(s) and kids. Ask if it's possible to have the teachers to hand out lists of homework assignments to ensure that, if she misses school because of fatigue that she can continue with her school learning. Has the specialist explain to you how important that your child has adequate sleep and good meals, especially before she's off to school, note that the typical breakfast may leave your daughter in the fog, if there's too much carbohydrates. I would tell you to make sure you encourage her to eat the right foods and even watch what she eats. If your daughter eats too many potatoes, breads, and sweet that will not help her it will give her what they call the fibrofog and being tired. Look at teaching her to make good food choice. I would suggest you look on line on diabetic meal planner, it's the right way of eating and by helping her choose the right food and the reason she needs to choose the right food, she may feel empowered. Pain and sleep issues are the same being 12 or being 30 and having Fibro. She needs pain management, she may also need to seek help with a rheumy, your pediatrician, nutritionist and chiroprator.
BTW, has your daughter started her mens, if yes, then she is going to through some rough times, watch out for sleep loss, as you know teen will sleep more and what your daughter needs is good sleep. If she is having difficulty sleeping and getting good rest, you may want to try Benadryle. Don't forget that you should always include your daughter in the doctor's visit and give her a chance to explain her feelings. Good luck to you and keep sending us email telling us how well or not she is doing.

 

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