It’s a common assumption that any bodily changes are just a result of getting older. I know I thought that way. Whenever a new issue arose, I’d push it in the back of my head not wanting to come across as a whiner. But the pain and frequency associated with these symptoms eventually became overbearing. I look back at how my body was slowly deteriorating and realise these symptoms could all be linked back to the progression of my autoimmune diseases.
In this post I’m sharing with you 11 of my early warning signs.
- Hair loss
6 months prior to my hospitalisation was when I noticed that my hair was falling out at an unusual rate. My hair had always been very curly and fluffy – I had to straighten it often to keep it manageable. But now I was starting to lose handfuls of hair weekly. At first, I thought great – now it will be easier to maintain but then it became so bad I didn’t want to wash my hair for days because it was thinning out on the top too quickly. Brushing my hair, washing my hair, tying up my hair, running my fingers through my hair – all contributed to my hair loss. It really created a lot of self-confidence issues.
- Increased fatigue
This has to be one of the worst ongoing symptoms of autoimmune disease. What you want to get done during the day, doesn’t coincide with what your body allows you to do. You can wake up with the best intentions to power through a task list but it rarely ends up turning out the way you want it to. The fatigue can hit you like a ton of bricks. One moment I would be on top of everything, running around getting errands completed. The next minute, I wanted to curl up on the floor of a shopping centre because the thought of one more step was too overwhelming.
- Fingernail changes
One of the first warning signs I noticed was a change in my fingernails. They say the fingernails are a window to what occurs in the body so when I noticed these changes I immediately visited a doctor. The colour of my fingernails had changed – they were now half light brown/yellowish and the bottom half, purple. In the cold these would turn a deep blue. I was missing all of my lunula except on my thumbs but these were purple also. Vertical ridges started appearing and I had inflamed nail folds. I experienced issues with cold digits. When I was suffering from a fever, my body would be burning but my hands and feet were freezing cold and numb.
- Muscle weakness
Exerting any type of physical energy was difficult. I had difficulty opening doors – they were too heavy for my wrists. My legs felt like jelly. My grip was completely gone and I started dropping a lot of plates and food in the kitchen!
Normal sunlight left my skin burning. I would have to wear long sleeve shirts and pants in Summer to avoid getting rashes. My eyes became sensitive to sunlight and street lights. I’m certain I looked odd wearing sunglasses after sunset. At work I sat underneath large LED lights and I left the building everyday with a warm rash over my cheeks and nose.
Sounds began to disorient me. If someone was talking too quickly, my anxiety was heightened. I couldn’t stand high pitch noises and I often told my husband to turn down the radio because it hurt my ears. Working within a call centre definitely didn’t help the situation!
Smells were just as bad. I remember being in a plane on a business trip when the crew suddenly brought out pork rolls. Being vegetarian at the time, they weren’t going to serve me one – but everyone around me was ripping them open. I couldn’t deal. There was no way of escaping the smell. You’re in a confined space, with nowhere to go and the best you can do is pull your coat over your nose. I tried so hard not to become physically ill but it was all too much to handle, I grabbed a sick bag and well the rest is history. I couldn’t believe it, I was SO embarrassed. When I went to pick up my luggage I overheard a woman pointing me out to her husband saying – “that’s the lady that vomited!”
Going into a supermarket became difficult. The sights, sounds, smells and speed of all the people began to disorient me. Walking home from work I would have to use all of my energy to push my feet into the ground in order to stand straight at the lights to prevent from falling over. If I walked at a slow pace I wasn’t able to stand without becoming disoriented. I made sure to power walk and get through it all as quickly as possible so I could sit down. My eyesight became blurry and I was afraid I was going to pass out in the middle of a street.
- Chest pain
I wasn’t able to walk longer than five minutes without my sinus tachycardia flaring. I would wake up and my heart would average 125 beats/minute. There was always a dull aching deep within my chest but on the days I found myself really exhausted, these pains were sharp and my chest sore to touch.
- Brain fog
My short and long term memory were impacted by my autoimmune disease. I would forget what someone had said to me within minutes. I was constantly forgetting what my husband was saying mid-conversation (no, I assure you this wasn’t intentional). He kept telling me, “I just told you this, I just told you that.” I tried so hard to recall the information but I wasn’t able to.
I struggled to get enough air into my lungs. I’m not sure if this was due to the constant panic attacks or that I had inflammation in my chest. It really could have been both. At the time I was a manager and held quite a few meetings. A day of meetings would leave me physically exhausted from all the energy exerted by talking.
- Bone density
I had never broken a bone in my body until 2016. I fractured my finger and damaged my tendon by putting minimal pressure on it. Long story short, I went to a hand specialist and had my finger bandaged and splinted for 9 months but it never returned to its normal shape. It had a growth of cartilage over the top and the result was a slight mallet finger. I went in to get a Dexa scan and found out that I had osteopenia. The worst of it being on my spine and hips. Osteopenia is a condition where bone mineral density is lower than normal. Bones are weaker, but not weak enough to be called osteoporosis.
My body ached every day and my husband was patient enough to help me by rubbing my legs and arms. The next day I would find my skin littered with bruises. I tried to stop wearing dresses and skirts because I wanted to hide all of these marks.
If you have already been diagnosed, did you notice any warning signs prior to your diagnosis? It’s very important to keep track of everything going on with your body – how you’re feeling, what you’re eating and deterioration/improvements. When visiting my specialists, they were asking me for timelines of symptoms and if anything new had arisen but I always drew a blank. I’d get home and remember but it was too late. Generally there are long periods of time between appointments so I wouldn’t be able to bring symptoms up until then. I now try and keep a medical planner detailing any new or recurring symptoms. I bring this along with me to my appointments.
You may be experiencing one of the above signs, none of these signs or all of these signs. It’s significant to note that every individual will experience their own set of symptoms so the above is not at all medical advice. If you are worried about your situation, I would encourage you to seek medical help from your doctors. They will be able to conduct further tests and determine any underlying conditions.