Discussions By Symptom: Lyme Disease

Pain for 4 years. Now tingling, numbness, twitches, spasms, fatigue. Among other things!

Posted In: Lyme Disease 2 Replies
  • Posted By: swilcox1990
  • May 12, 2014
  • 03:04 PM

Started 4 years ago after waking up 2 nights in a row, stiff and unable to move without pain. I couldn't grab a coffee cup, my fingers couldn't bend enough and trying was painful. I couldn't sit up in bed, I had to roll onto floor to push myself up.
That hasn't happened again but a month or so afterwards I began having right knee pain and sometime after the other too. Within the first year my elbows also began hurting and becoming stiff, especially first thing in the morning. It would take an hour or more to fully straighten my arms and the pain was terrible. It would also take about 15 or so minutes to get out of bed because of stiffness and pain everywhere else.
After the stiff awakening I did go to the ER and the only thing I could think of causing it would be a tick bite. I have been tested for Lyme's twice, negative. I have been to a rheumatologist and they ran 10 tests, negative. Did xrays of wrists, ankles, knees, negative except for normal wear and tear in my right ankle. Im 23, Im not sure what wear and tear would be normal at my age but that is hardly my concern. Despite the results of the Lyme's tests I took antibiotics maybe twice but at least once, a course of at least 10 days. Im still in pain.
In 2012, 2 to 2 1/2 years after onset, I began reading numbers out of sequence. I noticed because I was a cashier. During my year as a cashier standing still for long periods started causing low back pain but that was expected. The stiffness in the morning let up after about a year but the knee and elbow pain was still there.
I took another position with the same if not more hours but it enabled me to move around more. Although this new position required me to do more heavy lifting, I was capable when I started, and moving around helped my back, at first. I was required to lift boxes of up to 4 gallons of oil and car batteries. Oh I gained some muscle but 6 months or so into this my lower back pain became more severe and my elbows began burning, not just aching. One day I went in and my left forearm tingled all day, it was very annoying. About this time I also started waking up with my arms numb and tingling, pins and needles. Not from sleeping on them either, the one that was laying on top of my side.
It was during this time that I thought about pressure points hurting my back and neck and various other pains and discomforts I had. I decided to put my mattress on the floor. It worked for a lot of my pain but the tingling and numbness was still there, as well as the stiffness in my elbows.
2013, going on 4 years. Im very fatigued, my arms tingle, my back hurts, and my knees begin giving out on me while carrying boxes at work. But it has been this long, I just try to get used to it and carry on. I decide that I want to make more money so I take another position within the same company on third shift which pays more and has steady hours. This job requires constant lifting and moving around the entire 8 hour shift (not counting lunch shift is 8 hours). I move from moderate ladder use as well as lifting of oil and batteries, so I should be able to handle it, I can only get stronger.
I was wrong. I take this job and within 2 to 3 months, I am in excruciating pain. I couldn't tell but my forearms were swollen, I just thought they had gained muscle. My forearms began feeling they would break in half from lifting something 10 to 15 pounds. With this pain I also noticed bruising from the inside. My wrists began aching and I would get shooting pain down my arms (felt in the bone) into my hand.
I had to carry around a scanner for my job and just holding it at arms length beside myself would cause a popping on inside of wrist and pain. On top of this a new symptom began, pain and stiffness in my Achilles tendon. Climbing a ladder became almost impossible, I was near tears every step. While trying to get up from sitting during break it would be so stiff Id have to nearly crawl away from my chair in order for it to loosen up.
I began intermittent leave from work in April 2013, which meant I could go if I felt up to it, and I tried. I seen a doctor and he said it was tendonitis, which required rest, ice, heat. I tried the rest, ice was too painful, and it was summer time, so no heat. 2 weeks is supposed to be sufficient for tendonitis but I rested even longer because 2 weeks wasn't enough. I continued trying to work until September. I took another leave and didn't return. I was no longer able to lift or climb or walk for 8 hours.
It is now May 2014, 5 years this Fall. I now have much fatigue, numbness, tingling in my hands, feet, and sometimes other random places. My arms tire when I try to brush my hair, let alone lift something, the pain and swelling is immediate. I cant think well, I ran a red light, it just didn't register. I mix up colors and other words. In a serious conversation I just drop off sometimes or jumble up. Ive taken Naproxen, Tramadol, Gabapentin, no use. Ideas?

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  • If you choose to have another Lyme blood test, tell doc only to send to IGeneX. http://www.igenex.com (read about it) You will, at least, find out if it's Lyme and other co-infections. I was Dx'd after 2 1/2 years. Symptoms of RA, yet no RA. Would cry out in pain just turning over in bed. Had steroid injection in L knee for pain and swelling. While reading your story, the elbows and Achilles tendon jumped out at me. Then the 'brain fog' and loss of words. All too familiar. The best to you...
    RNdoesnotmeanIknow 1 Replies
    • September 28, 2014
    • 09:57 PM
    • 0
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  • I read your post and felt almost every pain. After researching all of this there are still no answers. This next week I start with yet another neurologist...neurosurgeon and rheumatologist at a university hospital. These doctors look for the weird and exotic stuff. I did find out (by accident on an mir of my head) that my brain tonsils had slipped 7mm below my skull. (yes...we have brain tonsils...its the part of the brain in the back that sort of saddles over the spinal cord and is tucked nicely into skull) It's called Chairi 1 malformation. It can cause EVERY symptom that I have had. Sadly...that it sounds like you have experienced. I am following up on that in two weeks. It's been a journey I wouldn't wish on anyone. I've had numerous Lyme tests...the ones that go to I GeneX come back with some positive stuff...the ones that went to Mayo came back as nothing. It makes you feel crazy when they tell you don't have what others say you have had. But, we will go with that for now.
    Anonymous 1 Replies Flag this Response
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