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On and off flu like symptoms? Is this CFS?

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Chronic Fatigue Syndrome
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Posted 6/30/2016 10:51 PM (GMT 0)
Hi everyone
I am visiting from the Lyme forum and have considered maybe this is CFS. I am just wondering if anyone's experience with CFS has been anything like what I have been going through for 7 weeks. I've had a terrible flu-like illness but with no objective fevers. Just genuinely feeling VERY unwell. Malaise. Fluey. Terrible aches all over my body, and these shooting nerve pains that are in my arms, forearms, wrists, ankles, thighs, shins, etc. At one point I had a sore throat, but that dissipated. I have had episodes of this on an off for years but never this bad.

I've been to my MD and had a whole gamut of bloodwork and a chest xray which has been normal. I just saw an ID doc who sent a ton of stuff off since this all started after a tiring trip to spain.

I have had a number of breakdowns. I have a supportive wife, but she doesn't understand the extent of how I am feeling.

Supplement wise, I am taking turmeric, ashwagandah, magnesium, resveratrol, pterostilbene, nicotinamide riboside, selenium, vitamin D, Maca. I also just started the Vital Plan. I thought maybe these were contributing to the illness so I stopped them a while, but it made no difference. I've taken more advil in the last 2 months than in my entire life.

Can anyone offer up a similar experience? Or offer advice to temporarily relieve these symptoms? Some days or I should say, hours, are better, and then I will just get these waves of flu like aches and pains. I cant say I'm fatigued, I mean I dont feel sleepy. And I am not sure I have PEM either...

Thanks for reading.
Posted 7/1/2016 12:34 PM (GMT 0)
JDB, I am sorry you are having such a hard time right now, I hope you don't have CFS/ME because there really isn't anything that can be done & we are left to our own devices to see what works for each of us. Have you been dx'd with Lyme? Lyme has a lot of the same symptoms as CFS so it has to be ruled out before a dx of CFS/ME can be given. This is a diagnosis of exclusion, all other possibilities are ruled out first. Sounds like you have had quite a few of these tests done so just hang in there, it seemed to take me forever to get a diagnosis & I had given up for awhile, I took a 6 month sabbatical from Dr's. If your Dr isn't looking in the right direction, feel free to ask him about CFS but if he doesn't believe CFS is an illness then you may need to move on to a Dr who does.

PEM can happen anytime from right away to up to 48 hours after exertion so kind of keep an eye out for that. Once it hits it can stay a few hours to a few months so that is depressing, right? They are looking into new ways to dx this illness & I am praying it happens soon, people shouldn't have to go through months of tests to find out what they have. I am on disability for CFS/ME, it is debilitating. It isn't that we are sleepy, although I can sleep up to 24 hours, it is a lack of energy because our bodies don't make energy basically. We can't sit down & recoup like most people, when the energy is gone it is gone & then we may have to deal with days of flulike symptoms & unable to move. I sit down after I have done something & don't expect it to help me. I can sleep hours & wake up totally fatigued. Somedays I have more energy than others but who knows where it comes from lol.

I hope this helps some & that you will find out what it is you have. Don't give up & let people tell you it is all in your head. You have an illness. I am glad you have some support but it is hard for others to truly understand. Take care, hugs, Denise
Posted 7/5/2016 3:30 AM (GMT 0)
Wow, your symptoms sounds a lot like mine when I was diagnosed with fibromyalgia. I kept feeling "sick" like I had the flu, bad malaise feeling, no fever either. Shooting, stabbing pains just randomly firing off all over my body. I used to get PEM as soon as I did anything. Even cooking dinner put me in a sick weird flare or episode and I had to lay down. I remember one day walking for an hour instead of my normal 30 mins. Within 30 mins, while I was laying down I became nauseated, a very weird feeling came over me, I felt extremely exhausted could hardly breath and just hurt all over. It was the scariest thing I have ever went through. I literally thought I was going to die or my body was starving for energy or oxygen. I have no idea what that was..PEM?
I can honestly say I am better now. I still have to watch what I do. I have only been diagnosed with fibro. I have been through numerous tests, doctors etc. I do get fatigued if I overdo stuff, not really sick feeling like I used too.
I also had lymes back in 1995. I had the round bulls eye ring. I did 2 weeks of antibiotics. I don't know if that was enough. All of my tests came back negative.
Oh, and I was Vit b12 and D deficient. I only take those vitamins, a muscle relaxer when needed and Tylenol or motrin.

Post Edited (Klambert1) : 7/4/2016 9:33:00 PM (GMT-6)

Posted 7/5/2016 10:50 PM (GMT 0)
Klambert1,

I'm sorry to tell you this, but you likely still have a lyme infection. You were not prescribed antibiotics long enough to clear a lyme infection properly and reliably to any extent. Back in 1995 when you were diagnosed, 2 weeks of antibiotics was considered sufficient. The CDC has been fighting tooth and nail to dismiss "Chronic Lyme Disease", however international led efforts have proven this government body to be miscalculated in their treatment protocols, which they begrudgingly have been slowly changing over the last 20 years. I highly recommend you revisit your lyme infection if you still have symptoms that would be in line with lyme disease (it sounds like you do considering a Fibro diagnoses years later, and CFS issues) it is the likely cause, even though you were "cured". I would pop your head into the Lyme forum and tell your story, or visit an LLMD and have them asses you properly. ID Dr's are not in tune with what Lyme Disease really is as their training is extremely sparse to the point it is dismissed.

An interesting fact that may change your decision. Somewhere around the 90's and independant researcher discovered that lyme bacteria create a "biofilm" to hide in when under attack from antibiotics. They hide in biofilms where the antibiotics cannot penetrate and kill the bacteria. This is internationally acknowledged research to this day. I cannot stress the importance of revisitng your lyme infection, by a proper LLMD (Lyme Literate Medical Doctor), or member of ILADS (International Lyme and Associated Disease Society). If you need help with this I recommend the lyme forum on this site as from my stalking of it I have seen some great advice go through this particular one. I even joined this site to tell you this, so please take it seriously.

Also I cannot stress the importance of finding a LLMD and telling them your story, not an infectious disease Dr or a neurologist or whatever specialist you are sent to. These are important Dr's as the main stream medical community is ignorant to lyme disease, and these specialists are the only ones who can properly asses your situation. If you need more info post on the Lyme Forum or visit http://www.ilads.org/ for proper information on Lyme disease.

Post Edited (Shocker35) : 7/5/2016 4:59:39 PM (GMT-6)

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