CFS or fibromyalgia?

Beingella,

I recommend that you have an abdominal CT to check for a Hiatal Hernia.  That's where the stomach protrudes through your diaphram.  I had a large one in which I had surgically repaired in June.  Some of my symptoms are gone, but I'm still exhausted.  One theory that alot of MD's wont acknowledge is the hiatal hernia/vagus nerve connection.  The vagus nerve, also called the wandering nerve goes through your entire body. if something like a hernia disrupts it, it causes a bunch of issues.  Do you get heart palpitations?  I am so sorry you are going through this at such a tender age.  If your MD won't check you for a hiatal hernia, go see a chiropractor.  They know how to physically check for it or get a new MD that is willing to listen to you.  Also, regarding the thyroid, most MD's misdiagnose hypothyroidism.  If your TSH level is above a 2, for sure go see a doctor who knows more about the thyroid.  I wasn't able to get a diagnosis for my hypothroidism, so I kept trying different doctors.  I finally found one who agreed with me that symptoms with a TSH above 2 can cause sub-clinical hypothyroidism.  Synthroid took my fibromyalgia away.  Now I have CFS due to a virus that I had 18 months ago.  I am praying that the surgery I had for my hernia will help over time.  I am experiencing more good days, but from what I understand, It takes a long time for that vagus nerve to heal.  I have appts for some acupuncture & chelation to try to move it along.  Good luck, sweety.  I hope this of some help & really hope you feel better soon. 

You sound like a very mature, "together" 13-year-old. I'm so sorry you're ill. Basically, I believe that with fibromyalgia, you would experience pain at various "trigger points" in your body. When the doctor presses on these points, it hurts. So if you don't have that particular kind of pain, but rather have muscle and joint pain, my guess would be ME/CFS. You could get this resolved by seeing a rheumatologist or infectious disease specialist. If your doctor is unhelpful (which, by the way, is common with this illness), you need to find a specialist who has the knowledge to deal with ME/CFS. Unfortunately, there is no cure for this illness, but you have every chance of getting better if you rest and don't push yourself, get as much sleep as you're able, eat healthfully (fruit, veggies, whole grains, protein), and remain calm. You sound a whole lot more sensible than the so-called medical professionals you've been dealing with.

I suggest you get a sleep specialist, and a sleep study. I have been much improved since my sleep has been fixed. Finally, I am getting deep sleep, something I do not get, wihout meds. I take Xyrem for sleep. Have been taking it for many years now, 12?.......hope you can find help. Sorry that you are suffering. I'm old, so it's not so bad. Love, abby