Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
My 16 year old has CFS, or so we think, its been 7 1/2 months and cant seem to get a consistent diagnosis. But how do I help her? What can I do for her? She went from a happy healthy 15 year old a week shy of her 16th birthday to having to be pulled out of school, in pain constantly, totally wiped out, zero quality of life.
Is there a way to help her get phsyically ready in the days leading up to having to leave the house for something?
I feel so helpless most of the time. I know she is miserable and even if it's a little thing I can do for her, Im open to suggestions. Thank you.
I wish I could tell you something that could help. Your understanding your daughter is huge, in and of itself. It took watching Unrest with my wife for her to finally get what I’m going through... and she’d been with me 25 years, almost all of it I’ve been suffering from this. Other than resting, resting and more resting, there is little I can offer that might help.
Um, little things, um, is there some small thing you can bring her/make for her each day? It doesn’t have to be much. I know you support her as much as is physically and emotionally possible... and isn’t it surprising just how much we can handle when put to the test?
Have you seen “Unrest” by Jen Brea? Or watched her Ted Talk? If not I *strongly* urge you to. For all of you. My sister, my other biggest supporter than my wife, watched it, and contacted me instantly. She’d been trying to help me with my anxiety and seeming inability to exercise because of emotional difficulties. Exercise helps that, after all. She felt sooooo guilty. I have never been upset with her, though, for her efforts to help me (I had only just been diagnosed with ME/CFS a year before “Unrest” was released, so all of this was new to us... despite my having suffered since (very likely) the early 90s).
Heh, the documentary won’t provide insight for what you can do, either. Just confirmation of what your daughter suffers from.
The good news... though... is that, as miserable as this can get, it does’t kill us. We can persevere. We can still advocate for help. Doctors don’t understand, yet... but they will!!!!!!!
-Nykodemos
I"m definitely starting to get some relief. For sure a complete diet overhaul is helpful, I cut out carbs, glutten and sugar (as much as possible, not perfect) and the doctors found I was low on Vitamin B and D, both energy producing nutrients so I added a supplement for those. I eat mostly eggs, fish, turkey, and chicken for protrein, no red meat (beef or pork). I also added a lot of vegetables and some fruit (lots of sugar) and at least 1/2 gallon of water daily. I also do turmeric, fish oil, and some other stuff but the supplements are personal trial and error.
How is she doing with push/crash? Does she get a couple of good days and then overdo it or is she nearly full time bed rest? It's super hard to do but I found the mental fatigue was just as damaging as the physical so I had to cut phone, internet, tv use way down... if I was crashed then it was sleep or maybe reading but electronics somehow engage the brain eventhough it seems mindless. (good luck doing that with a 16 year old girl ha ha)
My heart definitely goes out to you all, it seems like it mostly just has to run it's course. I actually did counseling twice a week and although I still say it wasn't all mental, the therapy uncorcked some childhood trauma stuff that I didn't even know was lurking and it did help! I wasn't depressed either.
Sorry, I'm kind of rambling here, just keep loving on her and encourage. There are a few helpful website out there that can help with setting up a personal care plan, this one has lots of free info http://www.cfsselfhelp.org/library
Prayers for quick healing, the numbers are much better for kids who get it, still has to run it's course but I've read some really good success stories. I'm also a big fan of Toby Morrison at CFSHealth https://cfshealth.com/
Lots of Love
George
If possible, I would get her assessed for an autonomic disorder at an autonomic center. That is something that often goes hand in hand with ME/CFS and something that can be at least somewhat treated.
I've been sick for over 14 years and have tried a lot of things. Things that have helped a bit have been:
1. Lactated Ringers (IVs) - Increase blood volume, raise low blood pressure. Reduce symptoms of tachycardia
2. Test and increase ferritin levels if indicated. Ferritin is the iron stores in the body. Many women are low. Lab levels are often missing low ferritin. It should ideally be 50+
3. Increase Vitamin D if low
4. Increase B-12 if low
5. Increase Iodine and COQ-10 if low.
6. Get a fitbit or a heartrate monitor that she can wear. The autonomic center will often assess the heart rate that you should stay under (her anaerobic thresh hold)
7. Measures to save energy like a shower chair. Staying out of the sun. Do not "overdo" it when having a good day. Periods of rest throughout the day. Also if she has ME/CFS exercise can be harmful...
8. Following the research out of The Open Medicine Institute. They are making great advances in the research of this disease
9. Some people are looking into probiotics as well.. I haven't researched this very much
10. *** Last but not least, I would make sure 100 percent that she stay off of hormonal birth control. I had serious issues with the hormones causing huge problems and I've heard many other women say the same. I don't think it's worth the risk.
11. One more thing right now there is NO current understanding of the mechanisms for what is causing this disease, no cure, and no real validated treatments. Therefore be cautious and do your research on any drugs or medications. Just wanted to put that in because a lot of people have been made worse by these drugs, myself included. It seems the bodies of many with ME/CFS are more sensitive to many things, including even supplements. Just be careful and aware of this.
Those are some ideas.
It is more important to try to recover than push to go back to school in my opinion. I know it's hard, but she could do her classes online, it would not have to be forever. She may be able to make some progress by resting and following certain protocols, especially since she is young. The disease is different for everyone, but most people agree that pushing too hard makes things worse.