Anyone else with chronic leg pain?

Some back story: 23 years old, came down with debilitating symptoms out of nowhere last september. 2 months in, diagnosed with lyme disease by first doctor based on a positive Igenex blood test. Took 2 months of doxycycline with no change in symptoms. Switched lyme docs and was also diagnosed with bartonella last month. Been on Rifampin and minocycline since.

Anyways, I am in so much pain! It seem like nobody with lyme really struggles with chronic pain like I do. I'm starting to think its fibromyalgia or something. The muscles in my legs, especially calves, feel like they are "boiling" - twitching all over, and it's painful! Feels like a horrible massage or something. I can actually feel the muscles rolling around down there, squeezing in on themselves. Just to be clear - this isn't your typical flu like ache. It's hardcore. From day 1 this has been my worst symptom, and pain meds dont even touch it. It doesn't come and go, but it does wax and wane, usually better in the morning and worse at night. Any physical activity causes more pain and more twitching. If I do anything high-impact (like try to run or jump) my calves will cramp up.

So... anyone else with this symptom? I really wish it would resolve already. I had crippling fatigue and lots of neuro symptoms, but that has mostly cleared up leaving me with a crap ton of pain to deal with. I'm seeing my LLMD next week, so I'm trying to get ideas of how I can target this symptom. Does anyone have any ideas of what exactly is happening? seems like some sort of nutrient deficiency or something. Maybe my thyroid is off? I've been taking magnesium from Thorne Research in pill form, but that doesn't seem to be helping. Any ideas would be appreciated!

I have severe pain in my wrists, shoulders(mostly right), and my knees, spine, and ankles. I also have moderate to nearly severe muscle and tendon pain. I began showing symptoms in third grade, at least that's when my face went numb for the first time that I remember, I was sent home from school with the flu.... I was only just diagnosed last year. "Does it get better?", I hope the heck so! I have gotten worse but I'm not getting proper treatment yet, I've only been on high dose amoxicillin because I had just had a baby when I was finally diagnosed and amoxicillin is the only thing I could take while breast feeding. Lately even my stomach muscles hurt so badly, like I've done 100 sit ups and it's painful to just sit upright and hold my posture. I have kids so I can't rest when ever I feel the need, I have to keep going.

I wish I had an answer for the pain, I just don't know though. I don't take pain mess but I notice that klonopin helps my neuropathy.

Drew I have been suffering for 15 yrs with lots of pain, just got diagnosed in November. Today I had such bad pain in my legs and butt but started back into antibiotics today. My pain started in my neck and down my spine, then my butt hurts a lot and legs. I think I was born with leg aches, had them all my childhood but I am now 54. I take a muscle relaxer every night because my muscles are so hard especially in the neck shoulder area and I would get spasms and I've also been on pain pills since this all started.

You are not alone but everybody seems to have different symptoms. I seem to get eye pain also, sometimes into my ears. My worse symptoms are also dizzy/vertigo, I can't describe it exactly and my pain.

Hope you feel better soon.

Thanks for the input everyone. I talked to my LLMD about possible fibromyalgia, and he seems to think it is a symptom of the Lyme disease.

My leg pain is definitely chronic because it's there all day, every day, all the time. My dr gave me some Flexeril to try, but I took 1 pill and noticed no difference. I knew it wouldn't work because I don't have spasms, whatever is in my legs is straight from hell and causing some strange condition that nobody can nail down.

It's in my tendons and muscles, and feels like someone pumped some poison up in there. My doc switched me to Biaxin yesterday, so maybe that will tip the scales finally. It'd be nice to see at least a ray of hope with 3 months in treatment and no change in pain symptoms.

yes, please think about Bartonella! I think your LLMD is right.

My dr considers fibromyalgia not as a disease/affection, but merely as a symptom of another illness. My sister and myself were both 'diagnosed' with fibromyalgia before we both tested positive first for Bartonella and then for Lyme.

I know what you are going through, it is so hard, cause no painmed seems to help. I have the joint pains, the muscle pains (run over by a truck feeling), and bone pain, for many many years. At times it is so hard that I can not stay seated, I sometimes have the urge to hit my legs cause of the pain.
Have you tried taking warm baths with epsom salt? They are also good for detoxing.

Sorry your suffering so bad. Sounds like he'll for you. I think the detoxing it takes the edge off. The probiotic really helped my stomach issues a lot and the baths do a little something as well.
Hope your pain subsides.

I had a lot of the same symptoms of leg pain that you are describing, lots of detox baths with the epson salts, peroxide & ginger and drink lots of lemon water. This helped me more then anything.

Btw I'm also 23. Hooray for being young and having your life fd over by this crapty disease -_-

Hi Drew and welcome!

When I was sick with chronic lyme one of my worse symptoms was the pain in my legs, it felt like I had 1000 tiny knives inside my legs and all I wanted to do was scream!  I also lost the use of my legs for a long time, I needed crutches to get around.   I had no idea back then that it was toxins causing me all that pain.

Like you when I first heard of detoxing, I didn't buy into it either.  I said to myself "what in the world does detoxing have to do with lyme?"...  Made no sense to me.

Well, I learned the hard way (as many of us do).  People kept talking about detox baths, foot baths, dry skin brushing and finally I gave in and said to myself "what do I have to lose?"...  So I started a detox regime and wow, my leg pains went away as well as the migrating pain around my hip bones, my arms, my hands, etc. 

On the advice of others who were getting better I bought a book they recommended to learn more about detoxing and botanical medicine and that's when I started to heal.  That was 8 years ago and I am still totally better from chronic lyme! 

If you have a tub, buy some bags of Epsom Salts, bottles of food grade 3% hydrogen peroxide and a natural fiber body brush and start detoxing!   The instructions are in the "New to Lyme? Start Here!" Sticky Thread on top.  The mustard foot baths also help.

Hope this helps!

Denise

@lmm22 - Yeah, cheers to being young and having your life f'd over by this! And it's true, I think legitimate fibro involves the pain points and overall body tenderness, and I really don't have that going on.

I would agree, the pain is probably mostly a bart thing. How long have you been sick? Are you on any treatments? I was actually considering getting some rick simpson oil to see if it helps, but I'm a little worried to try it since smoking makes my symptoms way worse.