Lyme Disease Community
What does lyme feel like for YOU?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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What does lyme feel like for YOU?

I am curious what other folks are feeling/what their symptoms are, etc. If you are willing to share, please post.

Thanks!
9 Comments Post a Comment
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1763947_tn?1334058919
Recently I have "electric shock" like pains in my feet, and what feels like dull pains throughout my body. I am exhausted all the time. I have poor eye site and anxiety. I am off balance most of the time and have mental confusion.
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Avatar_f_tn
I have arthritis that moves around.  Always in the knees, but sometimes elbows, ankles, wrists, fingers are involved.  Can change in an hour.  I don't have the energy I used to have (but getting better) and I'm not sure if the mental fog is Lyme or being 64.  I've been on antibiotics now for 7 months plus supplements.  Not sure if I'm getting a lot better, or just learning how to live with the constant pain.  Still working - sometimes by brute force.  If I can, I can sleep for 11 - 12 hours straight through.  That comes and goes too.  Every day is a surprise - never know how I'll feel.
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Avatar_m_tn
I have arhritis that move around a lot,mostly in hands and thighs. Anxiety,extreme sensitivity to outside light,nausea,very unsteady on my feet and dizzyness. Thyroid blood tests that makes no sense at all. GP is baffled and so am. Headaches and eyepain I No diagnose yet but I strongly suspect it's lyme
Maylise
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5569754_tn?1376857888
I am 42 and have consistent knee pain. Mostly when exerting like up stairs and brisk walking for the last 10 years. I do get pain and other cramps in my other limbs but it is not constant. I am also tired but that comes and goes. I can sleep a straight 9-10 hours a night. I have brain fog but is that age or Lyme? My IgG and IgM were both positive. My C4a level was 4366 and my CD57 level 44. Below 80 is considered chronic Lyme. I have left eye pain sometimes and floaters that come and go. My left eye has started this weird twitching during the day. I use to get a headache everyday but that has subsided. What made me persistent to find a dx was the constant knee pain for no reason. Hormones or that time of the month does make my pain worse. I had x-ray, MRI that showed nothing but to hear my knees you would think there is bubble wrap in them or crinkling paper. Very noisy knees. I also get numbness in my limbs especially during exercise. I do feel weak all of a sudden for no reason sometimes. I have bouts of anxiety which I never had before. Cant loose weight yet I am extremely active and have a good diet usually 1500 to 1800 calories a day yet can't drop a pound. I have food allergies and sensitivities which have gotten worse in the last couple years. Hope this helps. Lyme makes me think I am crazy with all these weird random symptoms. My primary care doc just kept saying it was thyroid and wanted to put me on thyroid meds. I refused.  
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428506_tn?1296560999

Speaking of my past, and not my current state:

-Waking up feeling exhausted.  A horrible, heavy feeling like I'm not far from dying upon waking up.

-Vast paresthesias:  Tingling or mild burning sensations in the skin in a glove/stocking pattern and in my face and scalp.  Random migrating  "zaps" and "twinges" all over my body.  Sometimes my whole body would "jolt" at random times:  I could be sitting at my desk then suddenly my whole body would shake, just for a second, as if I had gotten shocked.

-Drilling pain in my pains and forearms

-Sharp pain in my ankles that appears after I've been still or in bed or in the cold.  When this strikes, moving my feet is awfully painful.

-Phosphenes.  Seeing lights when there are none.  In a dim room, if I move my eyes from side to side it looks like (somewhat dim) camera flashes are going off.  I also see "trails" from time to time, experience eye pain upon moving my eyes, and experience ocular migraines.

-Facial flushing.  I would get the lupus-like "butterfly" rash.

-Discoid rashes of patchy dry skin, mostly on my neck.

-Small hard bumps covering my forearms and lower legs constantly for years, and in intermittent breakouts on my face, chest, back.  Breakouts last a few weeks.  Some of the bumps seem to have a hard white gritty substance in them.

-Lots of small red marks on my skin, flat and not itchy.

-Profound fatigue and "brain fog."  Difficulty recalling words, I started to mistake homonyms and to change tenses in my writing.  Difficulty articulating my thoughts, difficulty remembering things (recently learned or old memories, but especially anything recently learned).  Prone to transpose errors.  Easily distracted, poorly focuses.  

-Legs feel heavy, like they are dipped in cement.

-Heat intolerance.  Many symptoms, especially paresthesias, get worse with heat.

-Muscle cramps in my calves

-Ear pain, ringing ears

-Violent dreams that feel very real

-Symptoms of anxiety and panic attacks

-Sensory overload:  My nerves felt "irritated" and I was sensitive to certain lights and sounds.  For example, I could not tolerate being in a movie theatre.  At times, I would "abandon" my grocery cart mid-trip if the lights and noise in the store became too much.  I was easily startled, even by fairly mundane sounds.

-Systemic inflammation.  I felt puffy and sore all over.

-Symptoms of fibromyalgia.  Migrating phantom pains.  At times I had to sleep on an air mattress because my regular bed "hurt too much."

-Exercise intolerance.  I didn't get the endorphin rush that is supposed to come with exercise.  Instead my fatigue would worsen and I would be sore/achy.

-Headaches that were unlike my usual or "pre-Lyme" headaches.

-Joint pain, but honestly this came late for me and was not an early symptom.

-Pain in my face, mostly in my cheeks just an inch or so below my eyes.

And of course there was the depression and emotional anguish that came along with becoming so sick, being dismissed by doctors, fearing I'd lose everything, and  not knowing what to do about it!   I am very grateful to be so much better off as I write this today!
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4451049_tn?1387157037
Anxiety, mainly social anxiety; paranoia; irritability; depression; small body twitches throughout; wrist pain and stiffness; exhaustion beyond explanation, the other day I slept 24 hrs straight - no joke; don't feel like doing anything at all; want to be alone; intolerant of people.

Can't stand on my feet long without feeling like I'm about to faint and puke, it sort of varies in degree and seems to be worse during a certain time of the month; lightheadedness on standing; shortness of breath; chronic cough and I've never smoked; skin issues; sound sensitivity; short term memory issues, "wait what was I saying" or "what was I about to say"; vision decline; slowed thinking; environmental skin sensitivity; heat intolerance; ears ring; multiple strange, firm, growing nodules on head - lyme? Bart?  Who knows!

My symptoms change a lot and have changed a lot.  Just began treatment two months ago and my ears been crack and popping ever since, is that strange?  I'm also in more pain.  I have a lot of upper back and neck pain and stiffness, which was never an issue before.  

Have yet to be dx but my Dr uses the CD57 and response to treatment to make a clinical dx.  My CD57 was 5, so it's likely.  
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5792451_tn?1390938290
I'm only 26 and I feel like I'm 80. I'm almost underweight but my body feels so heavy that I might as well weigh 500+ pounds. My back aches, my muscles burn and spasm, bone pain that moves from place to place, random paresthesia that last for 24-48 hours at a time, muscle weakness, insomnia and exhaustion, add, foot pain (usually only in the mornings), heat and cold intolerance, but the severe migraines and neck stiffness take the cake for me. I can deal with everything else but when my neck feels like its exploding while someone is crushing my skull with bricks I can't take it!!!! I have anxiety attacks ever time my head begins to throb because I don't know if its going to be a regular headache or if its going to be one of "those headaches." I gave up on my pride along time ago. Now I go to the ER and gets hooked up to a morphine pump . No shame here.
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Avatar_f_tn
Let's see....

I am 27 years old.. My symptoms started with quick burning sensations all throughout my body.  Thought it was a pinched nerve or something... a few weeks later, was sitting at work and got extreme stiffness/pressure in my neck, base of skull and later travelled to my entire head. With that came extreme dizziness, nauseas, and (at its worst) difficulty walking. I ended up in the ER twice.  

All of these symptoms never left. I started running low grade fevers (around 99.4).  These would come as "hot flashes' I like to call them and then the next minute I will be freezing.  I have muscle twitching and full body twitching.  Constant face twitching.  I have started getting muscle pain that will last for a few minutes then alleviate.  I also have depression and irritability. I don't want to be around people, or to be touched, or even talked to. LOL Not good for my husband. ANOTHER recent symptom is that my hands and feet will literally just go numb. I'll be sitting there and suddenly, I can't feel my left foot. Then it starts burning.  

That's all I can think of for now. Every day is something new. I start antibiotics on Monday. I just tested positive on the Western Blot yesterday
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Avatar_f_tn
"And of course there was the depression and emotional anguish that came along with becoming so sick, being dismissed by doctors, fearing I'd lose everything, and  not knowing what to do about it!   I am very grateful to be so much better off as I write this today! "

i hate being dismissed!
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