I have a TON of symptoms. Too many to list. But my most debilitating symptom is non-stop pain. Yesterday was my wonderful hubby's birthday. I woke up with a migraine but I was determined to keep our plans and let him have a fun day. My parents took the kids and I took an imitrex and off we went to the movies. Our plans were cut short though because by the time the movie was over, my migraine pain had increased to a 7 and once we started walking it spiked suddenly to a 9. I ended up curled up in the car, moaning. On my husband's birthday. He takes such good care of me, he deserved to have ONE day of fun. We rarely even go out anymore. It made me so mad, and so very depressed.
Every day is pain. My joints throb all the time, worse with walking but they hurt even just laying in bed. My skin burns. My tendons take turns hurting. My nerves zap and burn. Even my bones hurt, feels like growing pains. My arms and shoulders ache so bad, even just putting on my clothes seems like an impossible task some days. And my head, oh my stupid head, I don't even know if I'd call them migraines because the imitrex only ever helps like 20% of the time.
I see my doc on Tuesday but so far he's done nothing to help with the pain. I feel like I'm going to go nuts if I keep living in this much pain. I feel like everything else, the cognitive crap, the insomnia, the fatigue, would all be easier to bear if I didn't hurt so much.
I take all sorts of supplements, eat pretty much low sugar and low carb, nothing is helping.

Chick - I see you were on doxy for several weeks. Was your pain better..or worse while on it?

What is the plan...that you and your Dr. are discussing?

My worst symptom is pain...nerve pain...but it's not as bad as what you're describing ---I'm so sorry you're going through this...and not getting help from the Doc.

You are seeing a LL Dr., right?

I'm on Armour. The pain was the same on doxy. Nothing has made a difference. I'm still on all my herbs and supplements. I had a bunch of lab work done last week so will find out how my thyroid is doing then. My doc tried me on LDN for pain. Didn't help and screwed up my already screwed up sleep.
I think the plan is to start biaxin Tuesday. I don't know if it will be enough to get me out of this hole.

Chick, I know this pain so very well. I had such horrible head pain that I would just cry and feel horrible for not being a good wife.

I have no read everyone's replies, but I wonder if you are not doing enough abx??

I sure got a lot of head pain relief with Japanese Knotweed. It took a month of moving up low and slow, but it was so worth not having head pain.

Hugs of comfort and I bet he feels horrible because you hurt so much.

Plenty of pain here, too...my worst symptom.

Hey Blue, I've heard that Kratom is addictive - any words, better yet links, on that? I surely don't want to recommend it to people if it's addictive. It's an easy claim to make, but I want to know what the people using it have to say.



I live in a ton of pain as well, Chick, and I'm so very sorry for you. My pain often interferes with my life - and hubby's because he lives with me. LOL. My hubby does a lot to watch over me and do what he can to make sure I have what I need at most any given time. But, I can't help what my body is doing to me.

Talk to your doctor about your pain levels being high so much of the time. Gabapentin works for some, others need to use prescription pain meds - I don't have a doctor, so I don't have anything to help me with my pain other than what I can come up with on my own. I use a ton of heat and ice though! LOL! I really should buy stock in those clay freezer packs!! LOL!

By the way, thank you all, knowing I am not alone helps immensely. I mean, it sucks that we all hurt and can't get much relief but just having a place to come where my people get it helps my mental state so much. My husband often wishes that I could find a local support group for this disease but there's none around here (Seattle area) but this group serves as my support group! Love you all!

Hi, I am sorry to hear that you are in so much pain. I am also in huge pain 24/7. I hate this disease

Well I survived the long busy day. I'm spent and hurting. But you know how I was looking forward to NOT having to cook because I planned ahead and made a huge roast yesterday? I was unable to eat it yesterday due to nausea (can't ever eat meat when I'm queasy/migrained). Well I got home from the busy day, hopped in a hot bath and climbed out at least smelling better, if not feeling better. I head downstairs ready for a slice of perfectly cooked ribeye roast, and there is none left! They ate it all while I was in the tub!! Yarggg! So I ended up cooking myself asparagus for dinner. Humph.