Not sure if I'm herxing or getting Fibromyalgia

I don't know about any one else, but I was first diagnosed with fibromyalgia/Chronic Fatigue Syndrome years before I finally got positive testing done at Igenex for Lyme. I'm sure it was Lyme all the time. For me, fibromyalgia symptoms are apart of the Lyme. I used to get what you are describing all the time. It was an everyday thing. Now I get it here and there, to what I think is just the waxing and waning of Lyme. Certainly if I am herxing, it will be worse. Especially the tendon tightening in my neck, legs etc. I think it is all one and the same thing. I don't think you have to worry, but maybe some others can give you their views on this. I really hope you feel better soon. It's all so scary, especially when new symptoms pop up. We all know how you feel. The fear of all of this can be the hardest part sometime. Take care of yourself!

Achievinggrace:

I figure that I am herxing, but sometimes my worry gets the better of me. Pain has NOT been one of my ongoing symptoms with Lyme so this is really, as you said, disturbing to me. It is always nice to come on here, post my concerns and then have them validated.

Hopeful, Thank you for your post too. That does make me feel better. Everything on my body is hurting right now.

Carrier, unfortunately once you have lyme, everything seems to snowball. You start think you are just imagining things. I remember thinking I couldn't possibly tell anyone what I was experiencing as no one has pain in their head, eyes, jaw, teeth, face, neck, flank, back, wrist, fingers, elbows, hips, legs, ankles, and calves on a daily basis. and once you start worrying with your nervous system haywire from lyme, it only adds to the pain as muscles tense, etc.

Fortunately I can now tell you that yes you are probably herxing and to make sure you get tons of rest, fluids, and be gentle and kind to yourself. Try and keep busy and think positive. Maybe try deep breathing to get through the roughest times. and believe it or not, you will get better!

After a year on antibiotics for Lyme + Co. my body was just screaming for me to stop all meds.

Nothing bad happened-- I just felt it was time to take a break.

I had reached a plateau recently where my only symptom was a nagging pain in my shoulder area-- particularly on the right side.

No amount of time on ABX-- or any combination of ABX has ever thoroughly eliminated this pain which I think is akin to Fibromyagia that WAS Lyme induced.

Though it is very localized to my shoulder area and neck too (no wide spread pain) it flares like fibro and I do get some relief with NSAIDS and pressure point massage on the muscle knots.

Anyway.....and aside from the shoulder pain.....I feel pretty great in general.

Since antibiotics were not 'curing' this year long Fibromyalgia type syndrome (that I did not have before getting Lyme Disease) I now think my body needs time to heal itself from this, naturally-- with diet, exercise, massage and a lot of positive thinking!

Thou shalt not be sick! .....is my new mantra! LOL

The decision to stop all ABX was precipitated by the herx reaction I believe I was constantly having-- all day long and at night too. In other words: my shoulder 'fibromyalgia' (for lack of a better or more accurate name) was worse and very consistent on ABX.

So I did a few self tests by going off ABX for several days..... and then would go back on them for several days. During the days off I always felt much better. During the days ON I was back to being in a constant (shoulder pain) herx. That is if this was a herx.

But now that I have been off ABX for over 2 weeks, the shoulder pain is significantly less. It does flare......but overall it is 90% better than it is when I'm taking ABX.

I have no way to explain this really. But it does feel good to NOT be in constant, nagging, all day pain.

I don't know where this hiatus from ABX will lead me. I could totally relapse.......or I could get better and better. Who knows.

But the bottom line at the moment is that I DO feel better while off ABX.

I am not suggesting ANYONE go off their meds. But for me, it just felt like it was time to do so.

Interestingly, I am sleeping better too. I always had to take Ativan in order to fall asleep. Now I can do that naturally and am NOT being awoken in the middle of the night by my shoulder throbbing with pain.

Again, I have no way to explain these 'phenomena'. But the plateau I reached on ABX seems to have been broken by not taking them right now.

I wish I could say I am 'cured' of Lyme.....but I won't go that far! Not yet! LOL But my fingers are crossed.......and I am trying very hard to not attribute every little ache and pain as a Lyme relapse.

Like for instance, yesterday I got a seriously bad headache--- bordering on a migraine-- and thought UH OH! Here we go! The relapse has begun!

But after a moist heat neck and shoulder massage, the headache went completely away and did not come back. It must have been a muscle spasm cutting off the blood supply to my neck and head. Not Lyme induced. Just my guess, though!

The relationship between Fibro and Lyme is real-- I think-- and I do believe I am dealing with that relationship, one that ABX is either able to aggravate.....or cure.

I just don't know where ABX fits in once you reach a plateau like I did.....and SEEM to feel better without them. The mystery continues.