Not only is Lyme disease a soul destroying and truly hellish disease to deal with. There are many symptoms that we experience that we often panic about but don't really know how to deal with.
So today I will be bringing up some of the symptoms we often experience and deal with on a daily basis.
I wanted to talk about these symptoms so you all don't feel alone! This is a lonely disease. I know when I get new symptoms I panic and find great relief by talking on the Lyme discussion group and finding out I am not the only one - I am not crazy.
So here we go...
1. Hair loss - hair thinning and hair loss can not only knock your confidence but it is also very worrying to many of us. Although it's not one of the main symptoms nor does it often get mentioned it is a symptom especially when going through herxing. It is the body's reaction to high stress situations. You have to remember all the stress you body is under with coping with Lyme. Like you all will have a way you deal with stress, whether it is screaming, shouting, colouring, singing etc. Your body reacts to the stress by shutting off hormones in order to use the energy elsewhere ( to fight off toxins and viruses within the body ). Once your body is a little more settled your hair will begin to thicken and grow once again. There have been some people who have suffered extremely badly from hair loss, going bald. This can really knock your confidence and on top of everything else you are dealing with. Just know it can improve. Try to destress with activities you enjoy - a mindful colouring, watching films, sewings, jigsaws etc.
2. Burning under the skin - this is a new symptom for me and I did engage with people on the discussion group to ensure I wasn't just imaging this. I received a number of replies with people telling me they also feel this symptom. It's very unpleasant. It feels like bugs crawling under your skin whilst it burns. I suffer with it on the back of my neck and lower head. I know many people suffer from this in their scalp. Just know you aren't going crazy. There is no know trigger to this symptom and I am yet to find something that lessens the burn and helps heal it.
3. Blurred vision - this can be one of the worst symptoms. As one minute you can be fine and the next you feel like you have drunk 11 glasses of wine. You feel dizzy and can't see straight. You may be out and about, you may be at home, you may be out in a group. To have to deal with not being able to see properly in any situtation causes a major amount of stress. It also causes you to feel very sick and tired as you just want to shut your eyes. The best thing to do is stay seated. If out in a group just take a back seat, let others talk and just listen for a moment. Us walking aids or ask someone to offer their arm or hand to you. It's never nice to have to rely on people but you have to, you have to be sensible and use the people around you. They want to help in anyway they can so they won't judge you for asking for a hand.
4. Joint pain - something for me that is getting worse recently. You feel 80 not 23. Bending and moving is painful! It becomes a point where loose clothes are your only option, cushions and padding is needed and easy shoes are what you need. It's hard to deal with as not only do you feel your body is failing you but you get to the point where you are wearing things you don't really want to wear. Meaning not only are you in pain when you are out and about, you don't feel confident. We just have to rock what we have & accept that it's more important to keep our pain levels at a reasonable level over our ego's. My Mama is amazing at seeking out suitable clothes that are comfy but are lovely and I feel more confident in. Top woman!
5. Memory loss - my memory is getting worse. This is frightening to me. I am finding more and more these days that I am missing part of my days. I simply can't remember. Sometimes moments come back to me when people explain the situation other times I simply can't remember. I hate this. You know me with cherishing moments and memories I don't want to miss major moments & memories. Luckily presently I have just missed out conversations and visits. I know my main trigger is food intolerances. Sometimes I can feel it come over me like a wave. I begin feeling sick, blurred visions, stomach pains and brain fog. When I get like this I panic and just want to sleep it off. As don't want to be sick and hate feeling this way. Though after sleeping it off I can wake up and part of my day are missing. You are so tired and fatigued however you can't even find the energy to try and figure out the missing pieces to the jigsaw. I feel maybe the best thing to do is quickly write down what has occurred before sleeping it off. Many of you may just suffer with memory loss without any real trigger. Keeping a journal or even a list of to do's for that day, reading over them may help things come back to you.
6. Brain Fog - brain fog.. oh boy. You are in a group and you feel like you are behind a glass not actually in the room with them nor part of the conversation. You may fear you are sat there giving the 'I don't want to be here' 'I'm bored' vibe. When actually you are in a bubble - a bubble you can't burst. Brain fog is exhausting and makes you tired extremely quickly. I know with my brain fog I am getting to the point I have to excuse myself from the situation. Leave on a high as my Mama always taught me. Leave before you feel too ill. Unfortunately a lot of the time this can lead you to feel boring because you can only hack short events. We must learn that just being at the event is a massive success. The cloud you are feeling, the glass that is there - you aren't alone.
7. Loss of Taste & Smell - we all love a yummy dinner and beautiful scented candles. I have filled my house with scented candles as I am unable to smell as well now and panic about having unwanted smells in my house. Though worst of all is the loss of taste. I could pour a whole jar of mustard on my food and the spice wouldn't effect me as I'd hardly be able to taste it. You can add herbs, spices and all sorts to your food and never taste the benefit. It's awful. It's hell to me. You lose motivation to cook, eat and enjoy food. I love food and miss it so much . On top of having to miss out on your fave foods due to intolerances you now can't taste the foods you can eat. Try to add flavour as best you can using natural herbs and spices.
Here are all the symptoms many of you will be experiencing with your Lyme:
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell’s Palsy, Horner’s syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose
Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights, peripheral waves or phantom images in corner of eyes
Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears
Digestive and Excretory Systems
Irritable bladder (trouble starting, stopping) or interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
Shortness of breath, can’t get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, heart blockage
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Mood swings, irritability, bi-polar disorder
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety
Memory loss (short or long term)
Confusion, difficulty thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Difficulty finding commonly used words
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
Unexplained weight gain or loss
Swollen glands or lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a “flu-like” illness, after which you have not since felt well
Low body temperature
Allergies or chemical sensitivities
Increased effect from alcohol and possible worse hangover
Just know that you are not crazy and the pain, symptoms we have to deal with many others couldn't. We do a lot fab job.
Are you suffering from any of the symptoms above and need help and advice on dealing with them.. please, please reach out.
Don't suffer in silence.
I hope this blog helps in some ways.
I will cover more of the symptoms over the next few blogs. As it's important to know and show you aren't crazy and these symptoms are part of the Lyme .
Suffering from them is a big a big task let alone dealing with them.
Love and peace