THE PAIN OF NOT LOOKING SICK

 

When you suffer from an invisible illness things are more challenging because you need to deal also with the pain of not looking sick. It feels awful being in pain, living in pain and not being believed. When you have to constantly explain yourself and convince others that your sickness is real and you are not  hypochondriac, it is a horrible feeling.

 

Take a look at my photo above. At a superficial glance, there’s nothing wrong with me. I look just fine! That’s where everyone is wrong! Little you or others know about the war going on under my skin, about the long list of invisible symptoms I experience.  I used to get annoyed whenever I was judged based on my appearance, while I was struggling to look “normal”. A few years back I took another approach: I started to Lyme educate everyone. I did my best to explain all that entails being a Lyme sufferer.

 

Once in a way when I attended a social gathering or when I met someone new, I was faced with the the same issue: everyone kept on telling me I looked healthy and that I may had a wrong diagnosis. At one point I had given up using makeup just because I could not stand one more comment regarding my appearance. I wished to look sick, just to be in line with everyone else, to make it easier for others to believe me. Their disbelief and ignorance made me feel worse than I already was.

 

Whenever asked  what was the most annoying symptom that I had to put up with, I said that it depended on the day I was having. That’s when I saw people raising an eyebrow in disbelief. Those who took an interest in finding out more about the details of my invisible illness know that I always tried not to burden them with my daily cocktail of pains and symptoms. Once they heard me describing how the burning felt like, they understood my misery.

 

The burning under my skin is by far one of the most disturbing symptoms. It never leaves me. It simply increases or decreases its intensity depending on my other symptoms.  I also get shifting pain in the muscles, joints and bones, combined with electrical pulses, twitching prickly tingly muscles. All of these things happen within my body on a daily basis. Despite all this, I still manage to put a smile on my face and carry on with my day. Life goes on! I learnt how to deal with all these.

 

 Neurological Chronic Lyme Disease (Neuroboreliosis) takes things to another level. Once the illness starts to affect your nervous system, you have to deal with a new ordeal of symptoms. Some of them are quite strange and bizarre, though not everyone gets to experience all of them in the same time. Some people have these sensations during a flare, a herx (Herxheimer reaction) while others have to deal with them on a daily basis. I count myself among the “lucky” ones who still have them.

 

When Borrelia Burgdorferi (the main culprit for Lyme) and Bartonella (co-infection) are hijacking your nervous system, you get to experience some unusual sensations, unknown before like:

  • crawling sensation – a creepy feeling that something is crawling around on or under your skin, throughout your body
  • freezing or burning sensation
  • buzzing or vibrating – better described as a TGV train passing through your body making each single cell vibrate
  • numbness
  • tingling (mostly in the limbs)- being pricked at once with thousands of needles. It does not feel anything like acupuncture. It is a totally different sensation.

 

How can I translate into words the burning sensation? Imagine that you went to the beach and got a severe sunburn which is making your body and skin ache. What do you do? You avoid touching your skin in order not to feel the pain or the tingling burning sensation. Now try to picture how it feels applying a frozen ice cube on your skin, all over that area that just got sunburnt. I am sure you just shrug your shoulders trying to visualize it. This is the best explanation I could come up with for the burning under my skin. Only difference is that it feels that way throughout the entire body. Some days it might shift from one area to another and it can change its intensity.

 

The craziest sensation is when you experience this burning on your head. Generally when you have neurological Lyme (Neuroborreliosis) , you get the privilege to feel it. That is a bit different. It feels like you have a slug or an army of ants moving slowly leaving an icy trail on your skull.

 

After reading about my daily ordeal, next time you meet someone touched by an invisible illness, please don’t tell him he looks good or healthy! Refrain yourself from saying something that would make him feel worse. Try to be creative. Make an effort and come up with something new!

 

 

19 thoughts on “THE PAIN OF NOT LOOKING SICK

      1. Omg, that is going on right now with me. Both forearms on fire for days. You sunburn/ice cube reference explains the feeling petfectly. Ty for sharing.

        1. You`re welcome! I tried to be as descriptive as possible in order to make others understand that the burning sensation is not what most of people would think of when they hear about it.

  1. I have neurological Lyme as well. My back always feels like I have sunburn. My memory is poor. My hair is falling out and the depression is so bad I have contemplated suicide.

  2. Thank you for taking the time to read and leave a comment! From one spoonie to another, please don’t give up the fight! You are not alone! Did you consider talking to someone at an international online chatting services (suicidal prevention)? Maybe you have already done it. They can’t cure Lyme but they can’t offer help with the depression by providing emotional support. There are many websites such as:
    http://remedylive.com/
    https://suicidepreventionlifeline.org/chat/,
    http://www.suicidestop.com/suicide_prevention_chat_online.html
    Stay safe and be strong!

  3. I was diagnosed a year after 2 bulls eye rashes , suffering horrible migraines, Bella polsey, chronic fatigue , brain fog and memory loss. With 2 co infections Babesia and Erlichia . A year of medications while keeping my job carrying mail outside in all elements and walking 8 miles a day. I was a go getter. Mepron, doxycycline and another handful of other pills and detox oils to help with herxing. I felt good , it was hell but at last I felt better..then a family tragedy happened and symptoms all back plus hearing loss and vision. Now out of work over a year surgery on both arms cubical and carpel tunnel surgery. Chronic migraine and no energy pain all over. No diagnosis bloodwork to a “ LL doctor” they would know I am battling my coinfections again. I have neuropathy, burning on both upper arms that causes me to want to itch. My
    Bloodwork shows chronic infection. But not one of my doctors are LL . I have called Boston and there is a 3 year wait for an infectious disease doctor who is LL. I am so afraid that if I don’t get treated soon they will go deeper into my nervous system. I gave up on doctors for a while and promised myself I would not give up this time but it is frustrating when they won’t even consider the co infections.

    1. Hi Ann! You got two bulls eye rashes? I don’t know how you managed to do your job while being on Mepron! I can relate to some parts of your story. First of all, thank you for sharing it here! Battling Lyme it ain’t easy! secondly, I learnt that you need to be mentally strong in order to keep some of the symptoms under control. Strong emotions can bring back a lot of symptoms.
      As for the doctors, I find that either they rush into giving one a diagnosis (which in most of the cases is not accurate) or they simply try to treat the symptoms and not the cause. A LL usually looks at all pieces of the puzzle and then comes up with a treatment plan. Speaking of LLs, did you try asking on certain FB Lyme groups about LLs in a neighbour state, or somewhere that is not too far from you?
      Also you may want to look into the Buhner protocol, it might help.

  4. I was diagnosed a little over three years ago with Lyme’s disease. With a course of about a month of two different antibiotics I finally started feeling better but took many months afterwards to finally get back to feeling normal. And I am currently suffering from the severe burning under my skin which I became very frustrated with because I could not talk to anybody who could relate to what I was going through. My doctors won’t even answer my phone calls anymore. All I want is for someone to tell me they can help me. I am currently taking Spiro which is supposed to help but it’s only been 3 days and not feeling any effects from it yet. I can’t sleep and it’s making me very depressed. Not to mention the stress its putting on my body is going to make the symptoms even worse. Thank you for sharing your story, I no longer feel alone.

    1. Hi Chrissy! Thank you for taking the time to read and leave a comment, as well as for sharing your own story. Unfortunately, most of the Lyme sufferers face this problem with doctors. You are your own advocate and must fight to get better. I supposed you were not seen by a Lyme literate doctor. Check if you have one in your area and try to get an appointment. Hopefully there will be a waiting list and it won’t take half an year for one appointment. One month of antibiotic treatment helps, but is not enough to get rid of Lyme.
      The burning under the skin may reduce its intensity and slowly go away with the proper meds or protocols. In my case, it didn’t go away for good. It is on and off, mostly kicks in when I am facing stress or I don’t get enough rest.Then it comes and takes over.

  5. Can you explain your twitching.. I have been dealing with a lot of these symptoms and seeing a lyme specialist and for some reason I’m still not convinced it’s lyme… I have seen every doctor imaginable, with really no reasons for my symptoms. My ELIAS came back positive and my western blot negative. My twitching is full body and my legs are losing sensation but also have burning in them as well as my spine.

    1. Hi Michael! Keep in mind that the Lyme tests are not reliable and getting a positive test is sort of winning the lottery. Most of the Lyme specialists would have a look at all of your symptoms and diagnose you without a positive result. Many Lyme sufferers had negative results at the tests, and later on when they repeated the test, it came positive. Others never got a positive result. Lyme and the co-infections can cause a wide array of symptoms (twitching included).

    2. I have exact same symptoms. I’m being treated for Lyme after positive igenex and dna Connections test, but negative cdc Elisa and western blot. My last mri was 6 months ago and I’m scared it’s not really Lyme even though my previous tests ruled out other Neuro disorders. When did yours start? What is the spine pain like?

    3. Hi Michael-I have exact same symptoms as you. Mine started with twitching a year ago and I also have changed sensations in my legs and burning and popping in my spine. I’ve had MRIs and EMGs and no diagnosis. Have had positive lyme testing only through private testing (e.g., Igenex). I’m curious, did you also start by seeing conventional neurologists? Did they come up with any explanation?

  6. Yes! I have lyme and coinfections and I also have horrible burning sensations all over—it’s the worst in my legs. It seems to flare up when I am on my iphone too long, so I think it has something to do with the EMF causing the lyme to flare up. It feels like a sunburn mixed with a static, tingling feeling. It waxes and wanes throughout the day depending on what I’m doing, but overall, it feels like being tortured in my own body with no escape.

  7. Are you being treated for lyme and the co-infections? With the proper treatment the burning can be reduced. Note that tiredness or overexertion can increase the intensity of your symptoms.

  8. Hi! I am experiencing the same symptoms, it began with a weird sensation of stiffness on my left leg and then it just went up the leg and also left arm, all the way to my neck. Every doctor said it is a psychological problem because they examined me for MS and I also had other blood tests done…amd all came negative. Also had a test for LD and it showed increased levels of IgG antibodies which showed there was a bacteria in my blood at one time but the spirebral fluid was negative. They dissmisead LD after that. But I read that the tests are not reliable. I am suffering a lot the last few months, having burnt sensations, pins and needles all over my body, anxiety all the time, heart palpations before sleeping… it really exhausts me. You mentioned that the doctors can help regarding the symptoms, could you write more about that maybe? Thank you so much for the blog and to find out I am not alone in this. Ana

  9. Hi Ana! Thank you for taking the time to leave me a message. You are not alone. Many Lyme sufferers share a similar path. Getting an accurate diagnosis and then starting to treat Lyme +co-infections can be a lengthy nerve-wrecking and quite expensive process.
    If you can find a Lyme literate doctor in your area, maybe he could be able to help you with your symptoms. A lot of people get a false negative due to the unreliability of the tests.

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