What does Lyme Disease feel like?

me2What does Lyme feel like?

A patient’s experience.

How often do you as a Lyme patient get asked this question? It is an innocent question from people who are curious, some even genuinely wanting to know because they care. But how do you answer? Lyme is so complex. It changes day by day, even minute by minute.

I will share my “typical” day as a Lyme patient below. Feel free to share yours in the comment section below.

Please remember that each day and each moment can be different. With chronic Lyme, symptoms change constantly, their locations, their duration, their strength. It all changes constantly.

Mornings:

Oh the dreaded mornings. I don’t want to open my eyes. The first conscious thought I usually have is, “Oh, this again. Go away pain and weird trembling feelings, just go away and let me feel normal.” So upon waking, usually the first feeling is back pain or neck pain. I usually have a vibration, sort of like an electrical current feeling running through me. I have to just lay there for quite a while to get “normal.” And what I mean by “get normal” is to feel like I can stand up without fainting, collapsing or screaming out in pain. Sometimes I wonder if I’m having seizures when I sleep because all my muscles hurt and I have that weird tremor running through me each morning. If I stand too quickly I have great head pressure.

It always takes awhile for my eyes to wake up. I can usually not focus at first. Sometimes I have one eyelid that won’t open. Almost like it’s temporarily paralyzed upon waking. This lasts a couple minutes.

After I do get up, I feel like I can’t sit or lay down. I have to pace back and forth trying to “lubricate” my joints and muscles. That is the term I use for the feeling of getting enough blood and oxygen to my muscles, nerves and joints. Kinda like oiling the tin man.

Throughout the day:

When at Home

I feel like I have been poisoned or I’m hungover. That is the only way I can think to explain it. It’s like I don’t feel “right” but can’t exactly put my finger on it. It is a combination of weakness, numbness, tremors, shaking, nausea, brain fog and severe fatigue. I am not talking about being “sleepy.” I am talking the kind of fatigue where you feel like you might slip into a coma. You feel like you are in a dream. You feel like you are walking through cement. Did someone slip Benadryl or Nyquil into my IV? You don’t even feel like you are in your own body sometimes. Half in the physical world and half in the spiritual, like your spirit is trying to escape your body. Yeah, I know, I sound crazy. But it doesn’t change how it feels. That is what Lyme feels like to me.

When I go Out

Most of my time is spent alone and at home in my room, in bed. This is where I can handle symptoms the most. It’s easier to be alone and have quietness. Any stimulation bugs me, voices, smells, noises, lights so being at home in a controlled setting is best for me as isolating as it is.

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Photo Credit: animevir.com

Sometimes I am antsy and feeling ADHD. I feel like I have to get out, or like I have to get groceries or see nature. Sometimes on rare occasions I WANT to leave the house.  Well this is what happens.

Sometimes it will feel great, especially when on an outing in nature. Usually it does not. Usually I can be normal one moment walking through walmart, then BAM. Kazow, Kaboom! My legs go out, they get so weak like rubber bands. Feels like my heart is racing or skipping beats. I get a shock to my head or neck. I feel faint. I feel like my body is too weak to push the cart or even walk or continuing to stand another moment. I can smell everything, chemicals everywhere. I can’t see. The lights above are so bright. They hurt my head. People are everywhere, trying to talk to me. They don’t see that I can’t understand that I am not understanding anything that they are saying to me. I feel like I am about to throw up. Please don’t throw up. Please don’t faint. I have to get out. Stop talking to me. I like you but I’m about to pass out if I stand here any longer, I have to keep moving or get out, which should I do? So much stimulation. Am I now autistic? If not, is this what the autistic people I used to work with when I worked in groups homes felt?

It is the same way at family reunions, friends gatherings, backyard cookouts, birthday parties or meeting at restaurants. It doesn’t matter where I go, it will be likely to happen. Panic attack or neurological overload? I don’t know. I just know the feeling of it sucks. So stop inviting me places. (Just kidding) But seriously, if I have to decline an invitation, this is why, it can be overwhelming as well as embarrassing not to mention totally uncomfortable. This is why one day you might see me out gardening but the next day I can’t come to your house for your one year old’s birthday party. I have “comfort” spots.

Comfort spots.. yep, those are the places where you know you can have your weird illness in peace. You can lay down immediately if you need to, like if your back goes out, or you get lightheaded, you can faint, you can throw up, you can just sit on Facebook all day if you want without judgement. These are the places you can control light, sound, what foods you eat, and you can wear yoga pants all day. Yeah! You don’t have to put on a fake smile and ‘act’ like you are ok, when you are not. You are allowed to be sick and you are allowed to take the comfort measures you need to get through it. These comfort places for me are at home,  with my kids anywhere, cuz I know they will help me through it, at local parks. Nature helps me ‘get out of myself.”

It is so hard to be out and about with people and try to act like you are not in pain, or feeling totally sick. Or trying to not throw up.

At Night:

I usually start feeling better as the sun goes down. I don’t know what this is. But as soon as evening comes my symptoms lighten. Not go away totally but I feel more functional. I can work on crafts, talk to my friends on the computer, visit my kids or play with my grandaughter, sit in the back yard on the swing, walk the dog. The vibrations calm down as long as I haven’t been too active in the day. Head pressure is less. Maybe it’s knowing I have gotten through another day. I can sit back put on Netflix and just relax with no expectations of me left to fulfill.

The only thing that is usually worse, the one symptoms that worsens as the day goes is back pain. Really back, neck, shoulder or any joint stuff I’m experiencing might get worse.

Sleeping:

Sleep what’s that? This is one of the those symptoms that can change with me. Usually I just ooopcan’t. Or if I do fall asleep, I will wake up two hours later, my brain tricking my body into thinking I have slept for the night, and just lay there for hours til the sun comes up and I hear the birds singing. As much as I love birds, I hate that noise. So many nights I lay here listening to the birds.

I wake up a lot with hallucinations. I see spiders usually, but also black balls, sometimes balls of bugs, or other strange things. It looks real but I know it’s not. They are called Hypnagogic Hallucinations. You can learn more about these here if you are interested. 

I have gone through the bouts of sleeping endless hours too. I know a lot of Lymies and me at one time, could not sleep enough. I would sleep for 12 hours straight, get up and eat, go back to sleep for another four hours and wake up feeling tired and exhausted. These stages or sleeplessness and oversleeping switch back and forth. Again the roller coaster of symptoms.

There have also been stages where I was up all night, only able to sleep from 5am to noon. That lasted three years. Basically sleep just never comes easy. Even when it seems all you do is sleep, it’s not a restful peaceful fulfilling sleep. You still wake up exhausted.

Symptoms I have Experienced

bladder pain * burning nerves * stabbing sensations * heart rhythm irregularities* chest pain like someone kicked in my sternum * confusion * apathy * anxiety * difficulty making myself think* can’t concentrate * troubles speaking * can’t think of word * pain * getting lost going somewhere familiar * leg pain * arm pain * head pressure * insomnia * fatigue * can’t drink alcohol (extremely bad hangovers and hives) ”  random hives on legs * vision is messed up * numbness in legs and arms * weakness everywhere * paralyzed feeling * head pressure * neck, back and shoulder pain * pelvic pain * rectal pain * tremor * visible shaking * seizure like activity * TIA (mini stroke) * menstrual problems leading to hysterectomy * twitching * need to lay down suddenly * fainting * low blood pressure * vertigo * facial flushing * hallucinations * rage-like anger * paranoia * dark thinking * panic attacks * agoraphobia * trouble swallowing * unexplained bruising * sound sensitivity * heat intolerance  * cold intolerance * dizziness *

These are the symptoms I thought of just off the top of my head. 

Written by Lisa Hilton

Here is what people on Facebook said about how
Lyme Disease makes them feel.

My story in detail is here. Please post a link to your story or post your story or your symptoms in the comment section below. Tell the world what Lyme disease feels like to YOU.

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13 thoughts on “What does Lyme Disease feel like?”

  1. lisa, YOU kept us all in suspense above hoping we’d see someone’s name at the bottom who wrote this!

    night time i know so well; sleeping 2 hrs. getting up to pee, and sometimes not getting back to sleep. so i watch tv until i fall asleep.

    lately i’ve gotten to bed 4-6 AM; my days/nights have been mixed up for 17+ years now since i retired/QUIT without retirement benefits at age 49 with almost 31 full yrs. working FT.

    birds singing in morning drive me up a wall even with the windows CLOSED!

    that’s with my cpap breathing machine going too….grrr.

    lisa, as a 46.5 yr. chronic lyme patient severely NEURO lyme, i had a hard time reading your story since you didn’t have short paragraphs and doublespacing between each paragraph like this.

    we start in and then we can’t comprehend any more; that’s what i hate the most also in addition to the extreme sensitivities of:

    lights/glare/reflections are like looking directly at the sun for me; so painful to my eyes;

    noise is AMPLIFIED and having had a former 16 yr. old neighbor with 2 RACING CARS and loud mufflers drove me up a wall! finally he moved out.

    chemical smells: perfume, hair spray, aftershave, colored hair, SMOKE ON PEOPLE’S CLOTHING, smokers, cleaning products, diesel fumes, some oriental foods, spray cans contents, bbq smoke, and the list goes on … prevents me from breathing.

    so i can’t go to church, movies, concerts, etc.

    family get togethers are rough too as after i leave, they are back talking about me … “it’s ALL IN HER HEAD” crap!! grrr.

    i love being home CONTROLLING volume sound, muting loud commercials, etc.

    i love sitting in the dark at night with just the tv screen light and hallway nightlite plugged in.

    right now is the BEST i’ve been in 27 yrs ending of FAMILY CAREGIVING thru their health crisis, death, funerals, and paperwork following my husband’s death 11.13.14.

    NO MORE STRESS FROM CAREGIVING; wow, what a burden taken off my shoulders for doing all i could for each of my immediate family loved ones all those years.

    i’ve had chronic lyme 46.5 yrs; 35 yrs. MISDIAGNOSED by 40-50 drs; completely UNACCEPTABLE.

    lisa, thank you and others for sharing your stories above, but most importantly for ALL THE TIME you spend on putting your newsletter/site together each month when you are so SICK!

    people take it for granted that’s it’s QUICK/SIMPLE to do since YOU make it look that way sweetie.

    lisa, god bless you for being YOU; a leader who I LOOK UP TO so much.

    you were a good student; now YOU ARE MY TEACHER 😉 KUDOS LISA.

    iowa admirer/friend,

    bettyg

    1. Thank you for taking the time to read it Betty. You are right when you say its not easy to write.. especially with my extreme dyslexia. But so many people ask this and so many don’t even know how to answer. I know we are all different, yet all the same.

      I am glad your caregiver duties are lifted off of you now and you can now focus on just YOU. I know how hard it is to be expected to do “anything” is.. sometimes its hard to “just be.”

      Im still praying for a miracle for all of us Betty xoxoxoxo

  2. I am 62 and was diagnosed with MS 20 some years ago and have suffered migraines and a variety of neurological problems since then. Several times I requested the Lymes test for different doctors who all refused in one manor or another including yelling at me when I insisted.

    I developed trigeminal neuralgia and my legs started refusing to function properly and my doctors basically referred me to a wheelchair telling me it was the course of the MS disease. Out of fear and frustration, I went to a Naturopath Dr who’s 1st question after seeing my symptoms list was if I’d ever been tested for Lymes. I was unsure how to act over finally finding a Dr wanting to find the source of my illness instead of wanting to just treat the symptoms. I was referred to a Dr who specializes in Lymes treatment.

    Since that referal, positive ID of Lymes and several co-infections and subsequent ongoing treatments, many of my symptoms have disappeared or reduced. I am far from being out of the woods as I still suffer from symptoms that come and go. Going out to places is hard as I never know how I will feel in the next minute. I am grateful for the attention this disease is finally getting. I am grateful for the few Drs who have risked their jobs, businesses and personal reputations to stay focused and determined to help those of us who have acquired this horrible illness.

    I am currently just passed the 1 year point of my treatment and am walking fairly straight again. I some times need to use walking sticks or grocery carts to lean on. I still suffer from bouts of instant fatigue and weakness, brain fogs and great pain in my hips and lower back. I only have occasional migrains now and those are generally from herxing. I am having better days now though. I feel like I have hope instead of a wheelchair promise. I am grateful for the additional herbal supplimentation regiments instead of just pharmaceuticals being offered to heal my body. The guidance to keep my body healthy so I can stand up against these bacteria is priceless.

  3. I enjoyed your article, and related so closely to everything you said. I’m hoping it’s a good resource for me to share with friends and family, as a fellow lymie.

    In 1998, I stayed having TONS of symptoms and was diagnosed with fibromyalgia. I only just learned this year that the symptoms are the same for Lyme disease. I tested negative on the CDC test several times. This year, I learned that I could pay for my own test via IGenex. I tested positive for Lyme disease. We assume it’s stage 3 and I will need treatment for life come up with a prognosis of 50-75% improvement if I stay on antibiotics forever.

    1. Im so sorry Lynn. Its kinda scary if you read about fibro, lyme, ms, cfs, and many more.. they are all have the same symtpoms, only Lyme explains a “cause.” I hope that you find a treatment that will help you. Sorry for all you are going through but hope you find your answers. <3

    2. Lynn,
      I do all my lab work through Igenix.
      I just call them and they mail my billing statement to me, I get 1 copy for myself and mail the other to my insurance co. and they have all been reimbursed. Just wanted to let you know that you have that option. Of course, depending upon your insurance company. I have Blue Cross.
      Best wishes.

    3. PS: I agree with Lisa Hilton, keep looking for answers, you may not have a life sentence of this. I’m wondering who your LLMD is. Don’t stop looking for answers to treat late stage Chronic Lyme Disease.
      Hugs.

    4. PS: Lynn , I agree with Lisa Hilton that you keep looking for answers. This doesn’t have to be a life time sentence, keep looking.
      Best wishes.

  4. I often don’t answer the question “how are you” anymore, especially to the people that know i have Lyme for 20 years and keep asking everyday how are you, cause they often ask but don’t really care about how you really feel, they just want to hear someone say “i’m fine” so they they can start a conversation about something else.
    Most people don’t want to hear i feel like a trainwreck, so i just don’t answer the question anymore.

    It may sound unfriendly, but i have a tendency to be honest, so i usually feel the urge to say i feel bad, but i don’t want to be a whiner, so i say nothing, it would help if they realize i always feel like wreck since i have neuroborreliose, then they wouldn’t bother to ask anymore, and we could just start to talk about other stuff.

    i do feel a lot better ever since i eat healthy and take a bunch of herbs and vitamin supplements and since i’m detoxing after i had my mercury fillings removed.
    It makes a world of difference if you live extremely healthy in how you feel, but it is still a long way from feeling actually good, but i guess i can’t complain cause i can still walk and do what i “need” to do.
    It would be fantastic if there comes a time that i can do whatever i “want” to do.

    but i’m fairly positive, i do believe that time will come, but it will probably still take years to accomplish that.

    1. Oh I could so relate to everything you just said. Well I hope the natural stuff keeps helping you! I am also trying all natural right now and hoping it will help.

    2. I totally understand that! I’ve been in treatment for 8 months. I’m kinda tired of answering the question how am I doing because when my treatment is working, I feel like crap. It just sounds like I’m complaining so I just say I’m progressing and looking forward to when I feel good again. Whenever that might, I think in my head.

  5. Hi there!
    I’m 37 years old women from Finland. I have had Lyme from autumn 2005, last october I finally got diagnose from Germany. Now I have been eating natural medicines over 7 months and I am getting better.
    I so feel you! I have big problems to express myself and you wrote all like I feel. Thank you for that! I really hope you will get help with all this shit what this awful disease keeps around.
    And I hope many sunny days to you!!!
    -M-

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