Experiencing new symptoms? Try not to panic

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‘It will be gone tomorrow’ or ‘this won’t last’ are statements others use to try and reassure us when something new crops up; a symptom we haven’t experienced before despite having lists longer than our arms of symptoms. I wish we could feel reassured but it is hard because we already cope with so much and the thought of adding something new to the list is terrifying.

I tend to panic when I experience something out of my norm because in the past, new symptoms have stayed with me and not gone away. For example, I had had neuropathic pain in my right leg for four years when I decided to have a lumbar puncture in 2012 as suggested by my neurologist. Despite many investigations no one had even come close to finding the cause of the pain so this was a last resort to check for any viruses in my spinal fluid. A lumbar puncture (LP) involves injecting a needle into the spine and taking out some of the cerebral spinal fluid. I had had two injections in my spine prior to this – cortisol injections with the aim of reducing inflammation – but they had both aggravated the pain significantly so I was very apprehensive about the LP. The LP didn’t just aggravate my current pain dramatically, but it also caused the pain to spread all the way down my other leg and into my lower back and hips. The pain is still very present in all of my lower body.

However history doesn’t always repeat itself and just because new symptoms have persisted before does NOT mean they will again. I have lots of examples of new symptoms disappearing after a period of time and not sticking around i.e a couple of months ago I developed the HSV1 virus (a strain of the shingles virus) on my right eye which led to neuropathic pain (trigeminal neuralgia) in my face. Despite my anxiety about it staying permanently, the pain gradually lessened and now I only feel a few pin pricks throughout the day.

So the next time you experience a new symptom; it could be a niggling pain in your face, a strange feeling in your stomach, or your body could feel like it is buzzing like a mobile phone; don’t immediately think the worst. Lyme is one complicated beast and symptoms come and go as the disease progresses or as you go through treatment.  I have heard from reading various blogs and speaking to others with the disease, about some very bizarre symptoms that lyme has caused, so you are not alone. As much as I hate the phrase, stay positive – stress and worry may aggravate your new symptoms and give them less of a chance of settling down on their own so try to stay as calm as possible.

Have you had any bizarre symptoms come and go? Let me know as we all need some reassurance sometimes.

3 Comments

  1. Kerry May 1, 2016 / 4:29 pm

    This happens to me all the time! Could be a new pain in my rib cage, a twitch, or a dizzy feeling. I tend to panic, because I’ve had so many symptoms a new symptom must mean something bad, right?! Actually, you’re right, it usually goes away in a few days and I’m back to feeling as normal as a chronic Lyme patient can feel. I’ve started writing down the strange new symptoms and then, if they are still bothering me by the time I see another doctor, I will bring it up. Of course, there are some symptoms that should not be ignored and I try to trust my instincts on those. If I can’t let it go, I’ll call my doc. Thanks for normalizing this feeling.

  2. Jennifer May 6, 2016 / 9:30 am

    It’s so unsettling right, to even lose the already difficult ‘balance’ of living with your current symptoms.

    Funnily enough, it’s been the birth of my now toddler daughter who’s taught me how to deal with this kind of uncertainty and being ‘thrown off course’. With little ones, whenever you’ve gotten used to a daily rhythm, their sleep cycles changes, they get sick or they learn something new that changes your day entirely. Those new phases used to stress me out, because disruptions of normal life are not always easy to handle with limited energy.

    But what I’ve learned is (as India Arie puts it): “the only constant in the world is change.” Nothing stays the same, not even when you’re healthy. So no matter how hard new symptoms and health changes can be (especially if you don’t know how long it will last!), it’s all part of living, and the simplest (although not easy!) thing to do is go with the flow, deal with it as best as you can and not worry too much about what the future may hold.

  3. Kami May 10, 2016 / 2:46 pm

    This post hits home for me – it can be so hard to stay calm in the face of new symptoms. Yet with Lyme it seems there’s almost always something new. I appreciate your advice on trying to stay calm and know that it helps me. Some of the more traumatic symptoms make it harder to do, but I find that bringing in someone else that is a calming source can help me get back to that place – and also help decide if we need to visit ER. This Lyme life is never dull on the symptom scale 😉 Thank you for sharing this, Sophia!

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