Hello. I have been experiencing very bad fatigue that now limits most of my life. Can't work very much, can't even enjoy vacations as after a few hours I start to feel very very tired. If I keep going, the fatigue turns into sort of a coming down with the flu type symptom. I also have pretty bad insomnia but even if I sleep well with meds I don't wake up feeling like I slept much at all. Don't have apnea. Also I have been seeing a neurologist as I have been having headaches and lots of pain in neck and shoulders. Have had various blood tests run by family doctor and all was ok. I know I am not okay because at 43 I can do less than my elderly aunt ( who has always been pretty slow moving ).
Have you had the blood test for Epstein Barr Virus? My pulmonologist is the one who ran it for me but our primary should be able to do that and it showed active EBV and based on my symptoms, it was determined that I had Chronic Fatigue Syndrome. What has your neurologist said about the pain in neck and shoulders? That is a very common first symptom of pain in Fibromyalgia. Run a copy of the symptoms for Fibro and check or highlight the ones you have and take it to your primary. I have found for me personally, that alot of doctors still don't believe in either syndrome. I am lucky to have a primary that does and she is treating me. Good luck!
I came down with mono from epstein barr virus years ago very sick but resuleved. I few years leter I fet really tired and tested positive for epstein barr again but believed it was done., Neurologist doesn't say much just put on on Gabapenitin which didn't work so quit as I was up to 600mg three times a day and didn't help much, now he's trying with lyrica 50mg twice a day, have some moderate success-shoulders and neck always sore also pain goes down by scapula area a bit. Haven't mentioned to neuro all the fatigue that I have had so will go over that with him. I just know it hurts most of all of the time, I also have really bad insomnia. Life has definitely not been much fun over these last few months, any suggestion would be appreciated, thanks!
I go to an immunologist that treats chroonic fatigue syndrome and fibro, a lot of times you could have both, one of the tests that my dr does. Is the epstein barr and hhv6 and natural killer cells activity.among others.
I agree with pepito6, it sounds like you probably have Fibro and Chronic Fatigue Syndrome and definitely the EBV will cause these issues! and just so you know, I take Gabapentin for my peripheral nueropathy and it works great for that but has done nothing for the pain in my shoulders, neck and elsewhere. Haven't found anything but pain pills to help with that.
To pepito6, how does your immunologist treat you for the fibro and CFS? Thanks!
My drs treat each symptom
First sleep - makes sure y get a sleep study and treats insomnia with meds( doxepin, lunesta )
Immunologic wise- if natural killer cell activation is low - she gives inmunovir antiviral
( from canada)They sell another type of this in the internet( i cannot think of name right now)
Pain- low dose naltrezone ,
Orthostatic intolerence- lots of fluid intake - salt. Meds depending. On what kind of dysautonomia
These r just a few that I know she does but of course everybody is different and needs different meds
She also likes us to do some form of exercise ( pool therapy or bike. , but she recomends
5 mins working out and 5 mins flat on your back ) start very slowly maybe with 2 mns and
increase every week by 1 mn
She also recommends a lot of omega 3 and co q 10 vit c ( antioxidants)
My doctor is just a primary. I wonder if I should ask her about an imuunoligist. I don't think they are very open here where I live to CFS and Fibro. I have had a sleep study and that was fine but I am on some meds that help me sleep, so not surprised there. But have not here of inmunovir antiviral and I know that Dr. Teitlebaum believes in cell activity. Thank you for letting me know. I hope it is helping you!
The name of the medicine that is the same S the inmunovir is isoprinosine 500 mg , you canget it in the internet , the way she asks us to take it is
1 st week - 1 tablet 3 x a day monday- friday ( off weekend)
2 nd week 2 tablets 3 x a day monday-friday ( off weekend)
Alternating weeks , she asks us to do it for 4-6 months and then be off about 4 months
You might want to ask your drs to measure all the virus and nk cell activity and depending on results ask him if you could get on this supplement ( over the counter)
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