Coping with Fear

St. Louis, MO
I've been a CFS sufferer since 1983 and I've been in a fairly severe flare for about 2 years. After many years of denial, I accepted my diagnosis of CFS but when new symptoms crop up, I am never sure what to do. For the last few months, I've had moderate to severe muscle pain in my upper back that was first on the right side and is now on the left. Although I'm pretty sure it's CFS because I've experienced similar muscle pain over the years, I can't help but worry that it's something else and my already taxed adrenals can't take much more stress. How does everyone deal with the mental anguish about whether or not to seek additional medical treatment? I can't even remember the number of times I've had the phone in my hands wondering if I needed to call 911 but, of course, didn't. This is no way to live.


Senior Member
Hi Rmsy59,

I'm sorry you are going through this, I've had the same thought myself many times. On the reading I've done, most of the familiar specialists say to make sure not to ignore any new symptoms. I know the downside of going in to a doctor with yet another new/bizarre symptom, especially if they are not tuned in to this illness. But you know its your body and life and only 5 minutes of their time, and you are probably paying for it in some way.

My young work colleague has ME too and sometimes we joke if a particular pain is getting us down. For example my left elbow felt so painful I would have believed it was broken, but then you remind yourself 'hey it'll be gone next week maybe and the pain will be somewhere else. The magical mystery tour of ME.

So yes I'd go, I've had back pain for a very long time, to the point where drawing breath hurt, and it's pretty scary. You take care of yourself x



Senior Member
You may have some viral and/or bacterial infections and toxicity going on.

I wish we had easy access to dark field microcopes in this country. It's wasn't a pretty site when it came to bacterial infections, but after a few months of antimicrobials, my blood looks pretty clear. I had bacteria (mostly L forms) taking over not only my red blood cells, but also white blood cells.

Treating Lyme Disease and toxicity has lessened these symptoms for me. Don't get me wrong, the anxiety is not all better, but I used to not be able to ride in a car without freaking out. Now it's not a problem. Treatment made me feel generally worse for a long while (herxheimer reactions), but the indescribable anxiety and fear is a lot better and now I only herx about once a month. Oh, and I used to dial 911. And no, I was never crazy, just very ill. I never dialed 911 in my life, and the times I did I felt my life was at risk. I still have anxiety (though I prefer terms like toxic encephalopathy because that's what it is). I had viral gastroenteritis a few days ago (it hit my brain really hard and raised my anxiety 10-fold) and I ended up in the ER because of the after effects. They thought I had a heart infection called pericarditis, but it seems that I don't thank god.

Have you ever been treated for bacterial infections (often opportunistic)? It probably won't be a cure, but it may help you.

And based on personal experience, it sounds like you aren't detoxing. I can't tell you what detox protocol you need to be on, but I can tell you that your ability to detox and your level of anxiety can go hand-in-hand.

You should seek medical treatment. You obviously need it. You may not get better, but symptoms can be helped. Though I don't believe allopathic/modern medicine approach could do much to make you feel much better. Maybe a sedative/tranquilizer could help, but those are addictive. I am not against them, as I take them myself. Maybe you are already on them.

An N.D. in combination with Integative Medicine doctor with an understanding of chronic disease states and CFIDS/ME may be a good approach.

Finding competent practicioners is the hard part. Best of luck.


Senior Member
Big gentle hug for you. I empathise. I know what it is like to have the fear alongside this illness. Just came out of a 6 day hosp stay cos the fear was exacerbating and it all got out of control. Don't give in to it and if I had just taken the tranquiliser I had been prescribed maybe I wouldnt have ended up in such a bad way. The psychiatric unit stressed me out even more and I feel lucky I got out alive. I didn't sleep once in there and my psychiatrist says i dont have cfs i have complex ptsd but they go hand in hand for sufferers of both. I am worn out and need to rest after the last six days. they arent medically aware and if you are struggling that much ask your gp to prescribe something to calm the anxiety before it gets too bad. Dont let it get on top of you. I did and no psychiatric hosp is place for us. More the extreme opposite. Take care and massive hug from me