Managing the long-term physical and mental effects of multiple diagnoses

As I’ve mentioned before, I have several diagnoses, some considered rare and others not so much. My first big one was Lyme disease. Frankly, I’ve never felt a return to “normal” since having it, and subsequently it was deemed chronic. I also have Ehlers-Danlos syndrome, mast cell activation syndrome, long COVID-19, and of course, hereditary angioedema (HAE).

So many of my diagnoses seem to have overlapping symptoms as well. I experience major fatigue and sensitivity to food, chemicals, environmental stimuli, and even weather changes. These triggers can cause rashes, nausea, inflammation, headaches, joint and muscle pain, and even emotional changes.

Over the past year, my discomfort has been increasing. Also, my neuropathy has become a more pronounced and frequent issue. These have affected my ability to pursue the things I formerly enjoyed and complete my household and caregiver tasks. All of this has resulted in increased stress and anxiety.

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I’ve written many times about how stress is my greatest HAE trigger. I’ve had many swelling attacks from mental and emotional stress in addition to physical stress. All of these can impact my quality of life as well as my ability to focus or work.

Earlier this year, I shared with my immunologist about my increasing HAE attacks and swelling. He said it could be from various factors and suggested that changing my medications might help. Reluctantly, I agreed to try a new medication, which didn’t go very well. It resulted in many more attacks and lots of rescue medication. I am still in the process of working through transitioning back to my former HAE treatment protocol.

Just last week, I had an appointment with my rheumatologist, who is evaluating me for Sjögren’s disease. I asked him if there were any known connections between my diagnoses. He mentioned that current studies are finding correlations between some of them. Lucky me!

He also suggested a possible intravenous immunoglobulin study I might want to be involved in, which potentially could address my chronic inflammatory demyelinating polyneuropathy. Unfortunately, I had to decline, especially after my recent foray into trying new drugs and my obviously oversensitive immune system. I’ve never considered myself to be delicate, but apparently my body thinks otherwise.

I’m interested in seeing the results of all the new and ongoing research into the immune complement system, and how scientists may develop new treatments for us patients. I’m just not currently ready to jump in and be a test subject again.

I’m still rebuilding my stamina. I think the best thing I can do for myself and my family is to take it easy, try to avoid my known stressors, and return to my best mental and physical health management plan.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.