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Pain pain so much (big old whine fest ahead, you've been warned)

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Posted 1/22/2017 4:24 PM (GMT -8)
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.
Posted 1/22/2017 5:30 PM (GMT -8)
My heart breaks for you chick.. I cannot imagine what I would do without my oxycodone. I was headed for being bed ridden if I hadn't have gotten something that worked, and I didn't get it until I over did it after gall bladder surgery.

I know there is a huge stigma against taking any of the narcotic pain relievers but for gosh sakes, if it stops the suffering why have people be tortured to death? It is NOT the addictive gateway to heroin use so many believe. Yes you can develop a dependence, but not everyone can't control themselves.

After 13 years of use, I still use less than half of my monthly prescription, and while I do have really painful stretches because of over-doing, the disease plus the weather, I only take halves of low dose when I absolutely have to, to avoid whimpering in bed.

It's getting harder and harder to get because of the drug culture and the government's attempts to curtail that.

But what kind of recourse do we have until we have these infections under control? Again, if it was cancer......

That is all I can suggest. Is there any way this is doable for you?


ETA: this probably won't help your migraines, not even with it being a aspirin combo pill, because it does nothing for my Lyme related headaches. But less body pain would be less stress for you.
Posted 1/22/2017 8:09 PM (GMT -8)
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?
Posted 1/22/2017 8:15 PM (GMT -8)
I was like this about 8 -10 years ago. Some of my nerve burning and tingling was from super low thyroid - not uncommon, and lyme is hard on the thyroid gland.

Have you had free T4 and freeT3 tested? TSH only is worthless for diagnosing thyroid, but most commonly done.
Posted 1/22/2017 8:21 PM (GMT -8)
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.
Posted 1/22/2017 8:30 PM (GMT -8)
I probably should have made a disclaimer that I suffered with pain off and on with my relapses for 19 years, and it wasn't until 2003 having gall bladder surgery that it got so bad I had to let my retail store go, even though it was after the surgery, like I said, that I got my first relief in all of those years.

Then the pain just hit me many times worse and never left after my upper arm/shoulder reconstruction in 2014.
I didn't get any Medical recognition of any tick infection until 2015. So loads of damage has been done to me.

I am hoping herbs will take it all a way, it would be wonderful.


I just can't stand to see anyone suffer like this the way I did.

Post Edited (julymorning) : 1/22/2017 9:33:46 PM (GMT-7)

Posted 1/22/2017 8:38 PM (GMT -8)
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.
Posted 1/22/2017 8:42 PM (GMT -8)
Same here never ending pain... specially in my legs. N9t a second of the day I go without pain
Posted 1/22/2017 8:43 PM (GMT -8)
Plenty of pain here, too...my worst symptom.
Posted 1/23/2017 1:20 AM (GMT -8)
Kratom for pain gets sorta dizzy n hot but pain stops for 5 hrs ...also bee venom breaks the signal reduces inflammation and has been eliminating symptoms .
the bone pain WAS the worst ...

my friend with babs says alinia or malerone is the only thing stops her migrains til her liver says quit
Posted 1/23/2017 8:29 AM (GMT -8)
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!
Posted 1/23/2017 8:56 AM (GMT -8)
Yes, heating pads, ice packs, hot Epsom salt baths are my main method of coping. But those are all very much housebound methods. Well, I have those heat packs that you throw away when you are done but I need heat on my whole body! lol!
My head is awful again today and it's my busiest day of the week. The kids have their homeschool co op, so that means pack lunches, drive quite a ways, hang out with loud kids all day, and the class I help out in is a gym class for kids aged 3-5! lol!! Help me! Then we drive home, rest for half an hour, then it's off to karate. My only saving grace is I made a huge roast yesterday so I don't have to cook tonight.
I can do this.
And yes, I will be having a serious talk with my doctor tomorrow about pain. I cannot live like this. I understand why people get on the brink of suicide. Living with non-stop intense pain changes one's brain chemistry and personality. It's unbearable.
I have two bottles of gabapentin sitting on my counter but I am scared to take them. My other doc prescribed them, not my llnd, and he wanted me to try to tough out the pain with curcurmin and LDN and just treating the underlying cause. I am also nervous of the side effects of the gabapentin and I read that it's success rate is rather low.
Posted 1/23/2017 8:58 AM (GMT -8)
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!
Posted 1/23/2017 9:07 AM (GMT -8)
Gabapentin helped me for a few months - at least it was a break in the cycle. Some get a lot of relief with it, some only short term, and some don't get any help from it. Most all meds are this way with Lyme. =(

Do be prepared to just have to delegate and slow down some. That's quite a schedule you have! I'm not telling you that you have to, check out your options first, but do know that if nothing else helps, that may be the only way for a while. Sorry.
Posted 1/23/2017 1:09 PM (GMT -8)
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
Posted 1/23/2017 6:39 PM (GMT -8)
Chick,

I love the title of your post - cracked me up. My litmus test is that if someone still has their sense of humor they will make it through. I'm betting you make your husband laugh and that he had a nice birthday just being with you.

That said I'm so sorry. Pain is the worst. It is so debilitating and makes us grouchy.

My pain is nowhere near what you describe but Wobynzyme PS REALLY helps me. It is a an anti-inflammatory and I won't go a day without it. Magnesium oil spray helps too.

Hugs and prayers to you.
Posted 1/23/2017 6:54 PM (GMT -8)
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.
Posted 1/24/2017 6:11 AM (GMT -8)
I am so very sorry you are in so much pain. My first thought was LDN but you said that screwed things up worse. I know people take it in the morning if it messes with your sleep and it can take awhile to work.

Also, are you taking a good binder? So important to mop up all the toxic crap.

Good luck and I hope you can find something that works soon for the pain.
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