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Poll for “Most Debilitating Lyme Symptoms

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Here is what people answered for most debilitating symptoms in a Lyme Support Group on Facebook, feel free to continue posting yours in the comments section.

What is your most debilitating symptom from Lyme? 
We asked this question on Facebook and these are the answers we got. (We removed names.)
    •  Fatigue
    •  pain
      Fatigue
    • mind processing
    •  Hearing loss.. Almost deaf in right ear. Hate having a hearing aide
    • Fatigue
    • Fatigue
    •  Fatigue
    •  Fatigue
    • Fatigue
    •  Deteriorating vision.
    • long term fevers and fatigue
    •  fatigue
    •  So many, most prominent, fatigue, pain, neuro and muscle pain. Not to speak of brain fog. Sorry can’t say which is worse, they all feel bad all of the time. All the best to all.
    • constant pain and nausea.
    •  central nervous system gets out of whack, fatigue, pain…
    • brain fog and fatigue
    •  My pain I can usually push through – achy joints, muscles and even the headaches. It’s the fatigue that stops me in my tracks. It’s the most debilitating, frustrating symptom.
    •  Neuropathy and Fatigue.
    • Either the pain, depression/isolation, or fatigue
    •  My brian will never work the same, have to ask lots off questions, because I can’t follow anymore, or mutitask, or I go crazy if thete is too much noise, and I can’t follow anything. I feel like my 93 year old Granddad at 42. I forget what I’m saying or doing, and it takes so much longer to do things.
    • Brain fog too…memory issues hinder me a lot
    • seizures and fatigue
    •  Seizures (because they are so very scary and have taken my independence), the heart related stuff too. Fatigue (because it makes me unable to do anything physically speaking, even walking to the bathroom sometimes), severe brain fog that has not only wiped out my short term memory, but my long term memories also! I used to play so many songs on the piano, literally hundreds, by memory. Now I struggle to remember just one.  That’s on the very rare occasion I even have enough energy to play.
    •  Oh, Debbie, I know what you mean – no matter how many times I play a song on the piano, I cannot memorize it anymore! It’s as if muscle memory has gone, as well as ‘brain’ memory.
    • Exhaustion and digestive issues.
    • Fatigue and severe pain
    •  fatigue and pain with twitching all together
    •  Fatigue & joint pain
    • Pain but the neuropathy is causing my muscles to waste away so very weak and lots of pain from it all….they say I will end up in a wheelchair next if it doesn’t stop and then not able to care for myself…
    •  Joint pain, fatigue, gastrointestinal issues
    •  Yes, Janet! That’s exactly what it’s like! It’s so very frustrating and sad.
    •  Fatigue and pain… Im happy to say the one area I have made progress in during treatment is neurological issues. I still struggle when Im over tired or stressed but I’ve seen significant improvement.
    •  CFS ,pain and panic attacks
    •  Pain
    • The one you are dealing with at each given moment?????? For me, it was the loss of usage of arms and legs, the tremors and the pain….but as I said, then you get whacked with anther and taking one day at a time meant getting over that particular symptom for the day. It changes so darn much.
    •  Fatigue, Non-functioning brain, pain
    •  EXHAUSTION AND PAIN
    • Mental Emotions .
    •  Fatigue and daily pain.
    • Non-functioning brain.
    • Fatigue is #1 pain is #2
    • Fatigue and pain.
    • Chronic pain and fatigue defiantly
    • Neuropathy – it’s been years since. I could walk without assistance !
    •  fatigue, muscle pain, and anxiety
      scleroderma
    • Muscle fatigue and Lyme-induced osteoarthritis
    •  Cognitive issues and fatigue
    •  Heart Attack symptoms , signs of paradysis and rash !
    • Fatigue and migraines are tied.
      Fatigue, pain, and a brain that sometimes does not want to work…
    • Heart issues, fatigue BRAIN FOG
    • Exhaustion, horrible pain and inflammation in my brain and spine. I use an ice pad just to be able to go somewhere.
    • Fatigue and brain fog
    •  Brain fog and balance!
    • Exhaustion
    •  Insomnia/Fatigue
    • Joint problems…19 knee operations …knees replaced when I was 36 and memory problems..brain fog.
    • leg cramps & pain
    •  Insomnia, fatigue, brain fog and spinal, neck and back pain
    • It was severe unrelenting fatigue, almost constant migraines, and brain fog – a difficulty finding words, formulating thoughts, concentrating.
    • fatigue
    •  neck/shoulder/back pain
    •  neuropathy, depression, crushing fatigue and a few more but you asked for one lol.
    •  Fatigue, numbness and stiffness.
    •  Paralysis and severe imbalance

 

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15 thoughts on “Poll for “Most Debilitating Lyme Symptoms”

  1. I’ve been infected with different co-infections over the past ten years. Initially I was diagnosed by a hospital and then ignored by several doctors for a year. Then I located lyme literate doctors. They helped me immensely, but I spent 10,000 out of pocket and ended up disabled anyway. I think when doctors ignore lyme or name it as some other disease so they aren’t flagged by insurance companies – it’s criminal behavior. They took an oath to heal; cowards, first they take your money and then they take your life. Disgraceful.

    1. Allen’s story!
      Hello, first let me start by saying that I’m not positive when I contracted it or even positive even now that I have it! I have ALL of the symptoms, signs of it, so I figured I will tell y’all my story and ask for help and see what y’all say.

      I have been fighting this since I was about 19-20 years old and I’m now 45! I was an avid deer hunter back in my early years and can remember pulling off quiet a few ticks that had attached to me, some had just attached and there was 1 or 2 that was attached maybe a day or so before I found them.

      And, I can recall that out of all of them there was at least 2 or more bites that it took a while for them to heal. No, I didn’t go to any doctor as I hated doctors! For me to go to a Doctor, I would have to be about dead! And, we’ll get to that soon. When I was 5 I fell from a rock pile and busted my head pretty bad and needed stitches, my mom took me to the family doctor who first strapped my down to a table/gurney. That didn’t work as I soon came out of it, they then had to hold me down. That took a toll on me as a child and has stayed with me as an adult, so it takes a lot for me to go to a doctor! That has really hurt my health as a whole and probably has put me where I’m at now. 🙁

      Any way, when I was around 20 years old I caught what I thought was the flu bug but it turned into a sore throat, that turned into strep throat, that turned into severe strep or something!
      My tonsils and throat swollen up so bad, my lymph nodes in my neck was so sore and swollen too that they had red veins running down towards my chest. I remember feeling so bad that I couldn’t even stand hardly or walk, my equilibrium was totally gone! I some how made it home from work, crawled into bed and the last thing I remember doing was praying to God and saying….”God, Either I’m going to get better as you have something more for me to do, or I’m going to die.”

      The next thing I recall was me waking up a few days later, thirsty as all get out but the one thing I immediately knew was that I was feeling just a little better! I crawled out of bed, got me something to drink and drank and drank, used the bathroom and I could tell that I had indeed turned the corner with whatever it was that I had had, I was getting better! To this day I’m not sure how long I was out of it laying in my room! I can guess about 2 to 3 days?

      Within a few days I was almost back to myself BUT, and yes here’s the but part! about a week or so after that incident happened my hair started to fall out! Not only that but the skin on the palms of my hands and feet started to shed! I could run my fingers thru my hair and come out with a wad of hair! I could start peeling my skin off in big pieces and the new skin under neath was like a baby’s skin but it was SO SENSITIVE!
      I couldn’t hold anything warmer than my body temp. I couldn’t hardly walk on my feet! It was bad until the new skin toughened back up!

      I found out later it was due to the toxins that was released into my body from whatever, I was/am very lucky to have survived. But, this was just the beginning of my suffering!

      Shortly after this, I had a red rash appear on my neck that soon spread to cover all of my neck and most of my chest. It stayed that way for probably about 3 years. The rash from time to time was a little irritable, it would itch a little, be a little chalky like on top. Then one day I went to the beach, got into the water and stayed in the water all day, believe it or not but after that, the rash just went away!

      But, then I noticed that I had polyps in my throat and not only that I had cysts that started forming all around my scalp. Some were bigger than others. Over the years I would actually cut and drain some of them myself but it would do no good, within a month or so they would fill right back up and even get bigger in size.

      Most all of them are filled with a liquid like stuff, when I would lance them yellow like puss would come out. When I got married my wife and I started to lance them and it was all I could do to get her to help. The first time she help she like to have fainted! It’s really not for the faint at heart! Seriously! There is one though that is not liquid, it is hard almost like a bone. I made a mistake once to try and lance it, when I did no liquid came out what did was like tiny pieces of hard like bone but it wasn’t. Afterwards, I got ill for a few days. So, I haven’t lanced any of them since.

      After the rash incident, I had incidents with my heart. Of course I never seeked any medical help but it felt as if my heart was fluttering? It was enough to scare me but not harm me. Them incidents happened several times over a couple of years.
      Now, I think I may have gotten bite back in/around 1989 in Georgia, the throat incident happened around that same time period. Rash started around 1990-1991 and lasted thru 1993, the cysts & polyps started around 1991-1992 and I still have them today.

      Around 1994 I started fighting a battle of highs and lows of depression and other unexplained mental things that I can not explain to this day! I think looking back now all of this may be associated to lyme disease.
      I also started having sleep disorders that has only gotten worse, severely worse over time!
      Here’s the kicker, I started suffering from something that I didn’t understand with my feet. Every morning when I would get out of bed I couldn’t walk! I couldn’t put any pressure on my feet for almost an hour!

      I had to slowly work my feet to put pressure on them to get them use to my weight so I could walk.
      During all of this time I smoked marijuana, I eventually quit smoking around 2009 or so and that is when my health really took a turn for the worse!

      Then it moved to my back! And it moved with a vengeance! Man, I tell you! I thought I was dying! I couldn’t move, I needed help to get out of bed, to get dressed, it would take me 2 hours every morning to “work” my back before it would loosen up just so I could do anything!

      It was then that my wife convinced me to finally go to see a doctor! That is where my battles has begun!
      The first doctor I went to, I had to convince him to order a MRI of my back, he finally agreed. I got it and came back, he told me that I had a severely herniated disc at my T3-T4 that was pressing against my spinal cord, and that I had a hemangioma in my spine at my T8-T9 that I needed to see a spine specialist.

      I didn’t have any insurance, self employed and I had no idea of what was to come of this all but boy was I to find out! Now, I still haven’t even heard of lyme disease as a possibility! Never even crossed my mind!
      And, I still don’t know YET, that I have it but I truly believe that is what all these symptoms and problems that I have suffered through just has to be as all of these doctors that I have been to to date has so far been wrong and mis-diagnosed me!

      But, yes there is more! Sadly there is more. 🙁
      After me going around to I can’t recall how many spine doctors and flat out being rejected for not having insurance, or I couldn’t afford them, I had to settle with a pain management doctor.
      He has been good to me and it has helped me cope with the terrible pain but over time it has only gotten worse!

      Last year it took a terrible turn for the worse! May-June of 2015 I started having issues with my abdomen/stomach, diarrhea and just hurting all around in my abdomen and my kidneys. Then it got worse, and then it turned to nausea, headaches that then turned to migraines, hurting in my back & neck so bad that it felt like it was breaking in half. This lasted for a couple of days of misery, the migraines, pain and nausea and vomiting only got worse! I suffered for as long as I could take it until I couldn’t take it any more and I finally let my wife take me to the hospital.
      They did some tests and finally a spinal tap to where they quarantined me as I had meningitis.
      In my records they diagnosed me with Bacteria Meningitis & Viral Meningitis. I really think that they didn’t know which it was but they finally settled on viral.

      They treated me for about a week, I got better and was released. The first day I was released I was walking to the bathroom and I don’t know what happened but I must of blacked out as I fell straight down on my left foot and when I did I heard something pop in it. It turned black and blue, I couldn’t walk on it for about a month and it took it well over a year for it to finally heal up so I could walk normally on it! I still have pain it in!

      Then, about 6 months later in Dec. 2015 out of the blue, not like in June where it crept up on me! In Dec. it hit me all in just one afternoon! I had terrible migraines, hurting terribly in my back and by that night I was back at the emergency room again. They done another spinal tap and again they said I had viral Meningitis!
      This time they called it Mollares Meningitis? But, even the infectious disease doctor said to me that she didn’t think that it was that. The doctor done a complete lab screen on my spinal fluid and could only find herpes semplex virus in it which is the virus that causes cold cores and most of us has it.
      She treated me for it, she wanted to give me a two week treatment of Acyclovir but within a week of receiving it I got better so she decided to release me and have me come back once a day to the hospital for the last week of treatment.

      I did and the very first IV treatment a new nurse came in to give it to me. She evidently did NOT know how to administer it correctly and gave it to me wrong! Which in turn it went directly to my Kidneys and crystallized!
      It put me in Acute Renal Failure! I complained while this nurse was giving me the antibiotic but she ignored me, I even noticed that she was giving me ONLY the antibiotic and NOT the saline drip with it, see, it HAS to be diluted. All the other times I was given it I got BOTH bags that was brought in to my room, this time the nurse was ONLY giving me the antibiotic. I asked her about it and she said that it was already diluted and the saline drip was only to flush the lines!

      I had no reason not to believe her other than shortly after she started giving me the antibiotic I started hurting in my abdomen/kidney areas, I informed her of this and she said it was nothing. When she came back in to unhook me after all the antibiotic was given, I again complained of pain. I told the nurse, her name is RLinda, she works at the Mayo Clinic in Waycross, Ga. and yet again she ignored me! She simply unhooked me, handed me some release papers to sign, told me to sign them and I could go home.
      As I looked over these papers, at the top of 1 of them was where someone could write in my current pain level from 1 thru 10, 1 being the least to 10 being the worst. RLinda had already written in my pain level as a 1!

      I asked her ow did she come up with that number as my pain level? RLinda again asked, oh, I can scratch thru that number, what level would you rate your current pain level at? I told her easily an 6 to a 8!
      She said, Okay, she will make a note of that for me to please sign it at the bottom and I could go. So, I did and I left!

      Shortly after my pain got really bad! I tried to lay down and when I did it felt as if I had sand in my lungs, every breath I would take I couldn’t take in as much as in my next breath! Luckily I had some medicine that I knew would help open my lungs so I took it and within an hour I felt well enough to get back up and do some research online as to what was going on.

      I knew the drug, I knew she had administered it wrong, so I started by going to the manufacturers website.
      In it I found a complete form as to how the drug was to administered and indeed she had administered it wrong! I also found out why I was hurting as when it’s administered wrong it crystallizes in the kidneys and puts the patient in Acute Renal Failure!
      I printed the information off and back to the hospital I went! I was treated horribly at this hospital! They ignored how sick I was, matter of fact, they wanted to take me back and hook me up for another round of the antibiotic, they ignored the information that I had, they ignored that I had done swollen up and could barely walk! It took me asking for their superiors and 1 of them coming out taking 1 look at me and her telling them to rush me to the ER before I was even treated!

      Even then at the ER they treated me poorly! The ER doctor refused to listen or believe me about what I told him as to what happened to me by 1 of the hospital’s own nurses! I think that is why I was treated so badly!
      While I was laying on the examining table waiting to get help, the ER doctor informed me that they would have to run some tests to see what was going on with me and if it was my kidneys, which he didn’t believe it was with my medical history, he would take care of me.
      They weighed me each time I came into this hospital, I just want everyone to know that I put on over 20 lbs of fluids in less than 24 hours! My legs was so swollen I could barely walk! I was in so much pain in my abdomen area that I can not explain!

      After they done their tests, they proved that indeed I was in Acute Real Failure! During this time of me laying on this examining table in the ER, my wife had to go to our vehicle in the parking lot. While outside she bumped into the Infectious disease doctor whom had ordered this antibiotic, my wife told her that I was now back in the ER and the doctor in formed her that she knew. After them talking for a bit, the doctor finally agreed to come in and talk to me.

      When she came in I told her about how this Nurse RLinda had administered the antibiotic wrong, I showed her the papers I had printed off, she agreed that indeed that was what happened! The doctor told me that the nurse had indeed administered it wrong and she was going to write her up for it! The doctor went on to say that this incident was not the only one, that the Mayo Hospital was leaving this hospital because of incidents like this and the staff being not trained well! And, indeed about 6 months later the Mayo hospital is in the process of leaving. It’s been advertised on the radio and all.

      But, I got put back in intensive care for a week, they had to give me a lot of fluids thru my IV to dissolve the crystals in my Kidneys! Since then I have had issues with my Kidneys and it has been put on my medical records that I have kidney problems, even though it was the hospitals fault and NOT mine that caused this!
      i have talked to a few lawyers about this and none will touch it!

      They say that I have to have existing kidney damage before they will touch the case! It doesn’t matter to any of them about how much I suffered at the hands of that so called Nurse RLinda, or how I was treated by the hospital, or how I had to be treated in ICU for another WEEK and I got billed for it! None of that matters! How is that MY fault! If ONLY that so-called nurse RLinda had done her Job correctly, if she had ONLY listened to my when I complained about the pain, if she had only listened when I told her about how every time before I always got BOTH bags of the Antibiotic and Saline before! But, NO and now I’m the victim and Now I’m the one that will suffer even more from this terrible disease and from this terrible nurse and hospital that has only made my life so much more miserable!

      Since then, I’ve been battling severe migraines, memory loss, vision loss, ringing in my ears, and I mean bad ringing in my ears!

      My kidneys hurt almost daily, my urine is extremely dark most of the time and a lot of the times it is very cloudy!
      But, yes, again, here we go again with another but!
      And, this one makes me want to cry!

      Seriously, whew, about 3 months ago I started having problems with my arms. More in my right arm than my left and guess what, I’m right handed! It started in my shoulder area almost in the joints but at the same time it’s in the nerves and muscles! It has weakened my muscles to where they will tear! I tore my bicep from doing nothing but pulling my arm back quick! It hurts if I turn my arm even remotely fast. I can not raise my right arm barely above my head and it has moved into my left arm now.
      Tender-nous, hurting even to the touch that progressed into a terrible pain beyond your wildest imagination! Seriously, I have done tried suicide once and failed! This pain is one that NO pain meds will touch! It travels down your nerves and bones! It is….100 times worse than a cramp because a cramp you can move and get some kind of relief, this pain you can not. Imagine something that wont allow you to sleep and if you try it awakens you with such immense pain that you have never felt in your life! Pain scale of 1-10 doesn’t even touch this level! 10 is a cake walk to this pain! They would need to move that chart up to at least a 15!

      Only time can make this pain subside! It may last 10-20 minutes! It’s worst at nights for me! Especially when I lay down to try and sleep. Then when I take my sleep meds and do go to sleep and my arms I can’t move but in a certain position or it will trigger that terrible pain, I start to sleep and move them! I instantly awake in that pain! You can only imagine!

      So, I ask? I have asked my so-called doctors and my spine doctor thinks it’s my spine?
      After doing my own research and a lot of thinking I truly believe I have lyme disease!
      And, it’s killing me!
      What else could be causing all of these things?

  2. Eternal pain from permanent damage done to my spine at the sacro-lumbar junction (I was told that is a very popular location for the spirochetes), over my iliac crests, and hip joints. I was not properly diagnosed or treated for over 30 years (I had the unlucky distinction of hiking in CT in the late 1970’s and got my first deer tick bite then). About 25 years later when the joint pain became so unbearable I feared losing my job, I saw an arthrologist who tried injecting steroids into my hip joints, which made the hip pain instantly worse and caused much more damage. Besides the endless joint pain, there is the constant unbelievable (even to me) amount of severe fatigue that limits me from doing even simple things like making a nice dinner. And, I cannot leave out the endless insomnia and brain fog. All in all, those are the fairly constant tormentors, but there is an endlessly changing array of other symptoms that csn attack at any time and can be just as painful and life altering, like irretractable seizures, dysautonomia = nothing in your body functions properly, anxiety and panic attacks, partial loss of vision and/or hearing, digestive problems, waking up terrorized from being unable to oxygenate, meningitis that makes me so desperate I create special ice helmets to stop the skull splitting pain (anyone else with meningitis caused by any other pathogen would be rushed to the ER and get help immediately, but not us). No short term memory, so just making a cup of tea becomes a comedic trek through your kitchen as you forget the teabags, then forget you did not not turn the stove on, or you forget and the water boils away so that that stink of overheated metal alerts you to your forgotten cup of tea. Having to pack away things I enjoyed doing for a lifrtime like beading, then knitting, then origami, then needlwork, and most upsetting of all reading. This is extremely distressing to someone who before end-stage Lyme was a very busy executive assistant who constantly multitasked daily. And most of all, as I thank Amy Tan for saying: the ignorance about Lyme and all the harm it causes. Ironically, I was able to obtain SSDI for permanent disability primarily caused by “Advanced Lyme Disease.” However, I cannot use my Medicare insurance to treat the very illness the goverment awarded me disability for!

  3. Complete mental take over. Everything from major depression, major anxiety listed with many other anxiety problems. Extreme head pressures and feeling of brain being taken over. SO scary and especially when there is nothing you can do to stop it. Absolute exhaustion, and fatigue. Insomnia, muscle weakness and migrating joint pain. So many other symptoms, but these are the ones I cannot come out of.

  4. Is there not help for all this? I thought Lyme disease was treatable and curable! Are we ever going to feel better? I can’t live much longer like this, I have no life!!!!!!!

  5. It’s kind of hard to pick one. Some are more transient than others, but I think cognitive decline and difficulty standing (nausea) are the most prominent.

    I used to jokingly think of myself as a part-time administrative super hero, but my ability to focus on something without being overcome with anxiety has been tough. I’ve helped design user interfaces in the past and have been a believer in automating things as much as possible. Now I twitch at having to invent a new password. I’ve taken to waiting until i have a good brain day, and i might be able to see the artifacts of having had one a few weeks ago.

    Not being able to comfortably stand has greatly reduced the size of my world and reduced my ability to even make minor contributions to the household. (Oddly enough, no one else seems to mind if things pile up.). When in public or around others, I find myself half listening while spying a place to lean, wondering if I will need to completely lie down before retreating to the car.

    I used to enjoy recreating and wanted to learn parasailing to replace running. Now pushing a shopping cart is enough of an adventure.

  6. The worst and scariest symptom I have would be the periods of time each month when I react anaphylacticly to the bio toxins released during herxes. Not being able to breathe is horrible. The pain, the weakness, fatigue,the sleep problems are bad enough but having an allergic response to the toxins is frightening and debilitating.

  7. “Not knowing” which of the eighty symptoms I have had, that tomorrow will bring. Will I be able to walk, think, taste, write, read, concentrate, eat, move, get out of bed…………losing the ability to plan, be reliable, and keep promises….adapting to a life that I never foresaw….learning to be grateful if I achieve just one thing a day…… acknowledging that no-one knows of a cure…..not knowing which of the many illnesses Lyme disease causes that I will die from. Yes….”not knowing what tomorrow will bring” is the worse symptom for me.

  8. The neurological symptoms including the seizures are the most debilitating. Although the pain is horrendous, the neurological issues keep me from driving thus keep me from many things.

    1. I am at the same stage too. First I had petit mal type seizures, now I just shut down like someone pulled the plug. I live alone, as my family abandoned me out of pure greed. The longest siezure left alone unconsciuos for almost exactly 24 hours so I thoght it was still Saturday and I was “out” for 15 minutes. I was wrong, it was Sunday 15 minutes longer than 24 hours. My only companion, my precious loving Pug stays by my side when I shut down and does not eat or even go to the bathroom. I feel sorry for her and feel I must give her up now as she does not desrve this. Then I will have no one. I also worry what will become of her when I die. I cannot get even one friend to promise to either adopt her or take back to her mommy pug’s home, where she is welcome. I can no longer go anywhere as I cannot tell when I will have a blackout. No one understands this at all. Not even visiting nurse organizations, who will not help me, as they know nothing about this disease and how very ill I am.

      1. Don’t give up your dog she needs u as much as u need her as u love her. Sounds like u would benefit from shared accomadation with a flatmate or a hostel? If that’s an option or what about a signal with a neighbour to open curtains in the am & close in pm & if this doesn’t happen to check on u? There should be more services available to come twice a day but I don’t know where u r located. Hang in there

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