Dating all the way back to 2006, thanks all for your generosity in sharing and for well wishes.
Im 60. I think my condition started when I was much younger from drinking any kind of coffee or taking any stimulant—I would come down with flu-like symptoms that were immune supression-related, i.e. sore throat, fever, often progressing to lower respiratory sxs (symptoms). I would fight it off with nutraceuticals. I eventually stopped using any stimulants including ephedrine.
I am a runner and had run 6 miles 2x/week for decades. (I loved running, like most of you who were exercisers.) A year ago the same flu-like sxs would occur with that, so I cut back running to fewer miles and then less often and then 5 months ago stopped all together.
Two months ago I did go an ND who did labs and only found a low ACTH. She hypothesized stress-related pituitary-adrenal issues that also affect white cell function. Two months ago she started a slow titration of low dose naltrexone (LDN) to stimulate immunity and ACTH production. So far, on half of her target dose, here's my report: I ran two blocks 2 days ago and tonight have a sore throat, sneezing and am fighting it from going into my lungs. I'll keep you posted if it eventually makes a difference when she reaches her target dose of 9mg.
In the meantime, thanks to your posts, I'll begin with a gluten-free diet, try H1 blockers (antihistamines) and find a functional medicine internist who can check endocrine function and methylation issues.
Best of luck to everyone.
Great thread. Helpful answers
I have had this since I was 13 years old. I contracted a particularly debilitating virus for a few weeks and went from being an incredibly active child to being bedridden for days after walking up a steep hill.
I have been to every specialist. My opinion of the majority of medical professionals is poor on a good day.
It has affected my life greatly and still no-one can tell me why.
Errr - bright side. I'm a lot older now and the severity of the symptoms have lessened. A lot of it is management and building up my tolerance to intense exercise.(very..slowly) I have dealt with this for more than half my life and it definitely teaches you hard lessons!
I'm hopeful they will develop past the vague and unhelpful diagnosis of CFS so I check up on forums every now and then. I am also looking into the effect of diet on your inflammatory response which I think is really helpful in managing the symptoms.
All the best to everyone! Thank you for sharing your stories
I get the same symptoms as mentioned here, and don't have the perfect answer. However, I think it might be heart or blood sugar related. I would imagine we do not all have the exact same issues, but I would just encourage everyone to be careful, don't overdo your workouts, and maybe get a check up.
I have Lyme disease as well. I started having symptoms about 9 years ago and was finally diagnosed about a year and a half ago. The flu-like symptoms started after exercise or massage about 2 or 3 years into the onset of Lyme symptoms. The symptoms are worse when I do yoga than cardio/weights. I think because yoga is so detoxifying. I agree with @NatHenry above. It couldn't hurt to be tested for Lyme if you are having these symptoms, but it MUST be done by a Lyme literate Dr using those specific labs. The CDC estimates 300,000+ people are contracting Lyme a year. I never had a bullseye rash and I'm not "outdoorsy." Plus I live in Los Angeles which is not considered a Lyme zone, yet I have 3 coworkers with it - one was born with it. Would have never believed I had Lyme Disease. Lyme mimics autoimmune disease, so it is frequently misdiagnosed. Also this flu after exercise seems to be frequently associated with Chronic Fatigue Syndrome which many think is actually actually Lyme. I am going the natural route to treat my Lyme. I've read that antibiotics are not the best choice for long term remission; plus the long term treatment with them destroys your gut microbiome. I have not conquered this flu after exercise symptom yet, but am confident with treatment, I will become stronger. I just bought the book "Unlocking Lyme" by William Rawls MD, a doctor who contracted Lyme and healed himself naturally with herbs and diet. I plan on following his protocol and am hoping for a solution. Another great book is "Why Can't I Get Better?" by Richard I Horowitz MD. Best of luck to all dealing with this yucky flu after exertion symptom. Hope we get a concrete solution soon.
Seeing how this was posted in 2006 and people are still posting in 2016, a decade later, I wish someone would take a serious look at this condition. I have been suffering from flu like symptoms and consistently get sick after working out or any exercise since June 2016. I am a competitive spear fisherman and have travelled the world diving. I was always extremely healthy and took great care of myself. That includes running, weight training, and eating extremely clean. Out of nowhere I started getting sick and the recovery kept getting longer and harder. I have had every possible blood test and everything came back normal. I am having my tonsils removed as the doctor thinks this may be where the bacteria is harbored and keeps coming out. I was hoping to see if anyone who has this condition has been told the same thing or experiences chronic viral and bacterial strep. I am 20 years old and had to drop out of a top university to deal with my illness and am just looking for an answer. This stupid recurring illness has completely put my life on hold, as it looks like it has for many of you, and I just want it figured out. As with many of you, the doctors don't believe there is a correlation with exercise and getting sick and just believe it is my tonsils. I hope they are right, but given the extremely similar symptoms everyone on here is experiencing, I don't know if it will be. I recently cut out gluten and dairy and am eating according to my blood type. I will post again when I am finally better and hope to have an answer that will work for some of you. Cheers.