What brings on a flare for you?

[Ashley]

Dawn,

Extreme heat is definitely one of my triggers, especially in the direct sunlight. I have some damage to my small fiber nerves, so I don’t sweat much and have a very hard time cooling myself down.

I also can have a flare if I get really emotional or stressed, but I have found that to be more of a flare of my autonomic nervous system. I will get a rash that starts on my ears and spreads down my arms and chest and feel like I am on fire when this happens.

Lack of sleep is also a trigger for me.

Another trigger for me is being late on any of my medications, especially when it concerns IVIG. The shortage brought on severe symptoms that I hadn’t experienced since the early stages of my diagnosis and was very scary to me.

These are a few I can think of on the top of my head now, I will also post more as they come to me.

What are your triggers, Dawn?

[Carmen Willings]

Oh my goodness! I get the same rash when I am in an extreme flare up! But my is on my thighs just above my knees. It swells, turns red and is hot to the touch – and it feels like my legs are on fire!

As for muscle fatigue and flare ups, the largest trigger is exerting myself and stress. When I am heading into a big flare that lasts several months, it always begins with chest/back/jaw pain when I walk up stairs or inclines. Then the heaviness in my legs and wobbliness/unsteadiness begins. During these periods, severe heat and cold make symptoms worse as does lack of sleep. Also hormonal changes are a big factor. My flare ups are probalby prolonged as I continue to work full time and push myself. I’m noticing lately there’s less “non-flare” times and a blending between flare ups and non-flare times. I’m trying to adjust and manage symptoms more consistently.

[Dawn DeBois]

I learned early on with my LEMS diagnosis that heat was my nemesis.  I can fortunately take hot showers to relieve my neck and shoulder tension; but any hot humid weather that I can’t find relief with air conditioning will bring on crazy LEMS weakness, including facial drooping. I wrote about the experience of trying to save money by taking my conditioners out early on fall in my blog, The Battle Within. I paid dearly for it.

Another LEMS trigger for me is any food that is has a lot of magnesium in it. Magnesium is contraindicated in LEMS and MG patients because it slows down the neuro pathways, and ours are already compromised. When I was doing Weight Watchers, I decided to make a “jello” with chia seeds and sugar free cranberry juice for a more full feeling in my stomach. When I could barely walk up my basement stairs, I looked at the amount of magnesium in chia seeds (95 mg per oz) and sent it to my neuro- she said that absolutely could bring on the flare I was feeling.  My neuro cautioned me from day one about taking any magnesium supplements but many neuros never even mention it. I also found dried papaya and mango have high levels of mg because it’s condensed.

Stress, illness and not getting enough sleep are triggers as well. Those I try to alleviate by managing myself. IVIG has helped me greatly in regards to avoiding illness!  All those extra antibodies are super helpful!

Lastly, not receiving IVIG during the shortage, just like Ashley found, was a real eye opener to the benefit I was receiving. I was shuffling around like a grandpa, barely able to life my legs. I was exhausted, weak, and most of all, I was having trouble with conversations. It turns out the type of antibodies I have, type-N, are highly prevalent in the brain synapses and when they once again took over without the Ig in my system, everyone I spoke to knew something was dreadfully wrong. My first IVIg treatment after the delay immediately brought relief of those symptoms. Some describe “brain fog” as a sign of a flare with autoimmune disease. My term for what I went through with the shortage was “brain paint,”  There was no way to see through it and grab any words I was trying to say. It was incredibly scary.

[RDT]

Since my LEMS isn’t stable yet, excessive WALKING or Delayed Standing will make my muscles weaker and especially my calves will cramp up terribly & fasciculate. Then my chronic fatigue kicks in and I’m bed bound for at least 2 days. If I go out for a Dr. appt etc, I will have rested up for at least 2-3 days beforehand. So when I go out, it’s not that bad in the moment but it quickly catches up and I’ll get the above symptoms and is definitely at its worse the night of and next day. I also have atrophy of my vocal cords. So I have a low or hoarse voice that will only last about an hour if I’m constantly talking. Weak voice will last all day if I only talk in short bursts.