A flare with EDS typically involves an increase in pain (and instability) in specific joints. For example, a bad dislocation of my shoulder can lead to severe pain (and bruising) for days and the need to immobilize for a period of time to allow the shoulder (and all of the supporting tissue) to calm down. The same applies to all of my joints.
When my neck "flares" I am typically dealing with several cervical rotations that lead to unpleasant neurological symptoms. Fortunately, we are pretty good at figuring out the cause of the problem based on the specific set of symptoms I am experiencing. To manage I receive manual therapy weekly to work through the cervical rotations and muscle tension. I also wear a cervical collar when the neck pain and instability are unmanageable (I try to avoid the cervical collar as much as possible as my neck muscles tend to “forget” to hold my head up after wearing the collar for extended periods of time).
A flare for POTS usually involves several days or weeks with a lower blood pressure than my normal baseline, tachycardia at rest and with standing, difficulty tolerating being upright for more than a few minutes, more pre-syncopal and syncopal episodes, and usually the need to increase IV fluids and blood pressure medications for a period of time. A POTS flare can be caused by a number of different factors--dehydration, heat intolerance, too much exertion (such as with travel), illness, cervical rotations (a flare in my neck can lead to a flare in POTS---the body is connected).
A flare with MCAS involves allergic reactions (primarily rashes) to unknown allergens/triggers more regularly. Sometimes a MCAS flare leads to an asthma flare (as I have allergic asthma). I wear a mask for precautionary reasons and always in the presence of grass (as that triggers an asthma attack almost instantly).
CRPS flares often bring the most panic because I have no medication options anymore with the exception of Ketamine. I try my best to avoid tiggers and until recently CRPS had been in remission. Unfortunately, my body decided to react to the hardware in my leg and that has led to a flare of CRPS. With a flare, I get severe pain in my legs. They feel like they are on fire and even the breeze blowing against my legs is excruciatingly painful. Hopefully, having just removed the hardware, this particular flare will subside and I’ll return to baseline shortly. In the meantime I will work on desensitization techniques by using different textures to rub on the problematic area(a).
For GI issues (gastroparesis), I am not sure what a flare is at this point as I haven’t tolerated food in a very long time. If not tolerating food is a flare then I have been stuck in this flare for 2 years.
Flares are frustrating but inevitable. Sometimes they occur with no known trigger or reason. Other times they occur as a result of pushing yourself. Often times, multiple problems are flaring at the same time. It is exhausting and just adds to my baseline fatigue. But you can’t stop living your life just to avoid the repercussions. It’s important to find a balance.
It is important to remember that there are many faces to chronic illness and everyone experiences flares and symptoms differently.
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