Mast Cell Disease & Central Pain Syndrome: The Connection Is (Painfully) Clear

I wanted to write more about mast cell driven inflammation in the brain and how it can cause something called CPS (central pain syndrome). I had never heard of this before but when I read about it I couldn’t help but see the connection.

CPS can be caused by stroke, a tumor or an immune system disorder. It can contribute to a surprising number of MCAS symptoms:

Pain can either be relegated to a specific part of the body or spread to the entire body. It is typically constant, and may be moderate to severe in intensity. It is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures along with many other similar ‘triggers’. Burning pain is the most common sensation, but patients also report pins and needles, pressing, lacerating, aching, and extreme bursts or constant sharp or unremitting excruciating pain. Individuals may have reduced sensitivity to touch in the areas affected by the pain, as if the part is ‘falling asleep’. The burning and loss of sense of touch are usually, but not always, most severe on the distant parts of the body, such as the feet or hands, spreading until it is in some cases felt from head to toe. For some patients with intense affliction, there often can be unremitting nausea, causing vomiting. The pain can also bring on hyperventilation. Blood pressure can rise due to the pain.

If you’ve been reading this blog you already know that I suffer from all of this and even wrote about it a few days ago  before I knew about CPS:

Less than two hours ago I went from feeling pretty good, considering it’s that time of the month again, to being in so much pain that I just wanted to die. I passed out twice and puked my guts out while writing on the bathroom floor, completely out of the blue. It came on so hard and so fast and  lasted for 15 to 20 minutes and then, for no apparent reason, went away almost as quickly as it came on.

The pain often comes out of the blue and emanates from everywhere and nowhere for me. It’s always been difficult to describe. I also get random stabbing pains all over and I’ve written about this before, too. I call it the “invisible ice pick guy” because that’s what it feels like.

Pins and needles in both my hands and feet are a real problem, too, and I often get transient tingling. I also get burning feet and limbs that fall asleep easily. Now I know it’s all part of a collection of symptoms that are attributed to this Central Pain Syndrome.

There is an obvious connection between CPS and MCAS. The question is, what (if anything) can we do about it?

Pain medications often provide some reduction of pain, but not complete relief of pain, for those affected by central pain syndrome. Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful. Lowering stress levels appears to reduce pain. For regular treatment some people prefer body length heating pads while others rely on warm baths, and most any normal ‘hot or cold’ help.

Interestingly the Doxepin  has helped a lot with these symptoms. It is a tricyclic antidepressant so it alleviates my depression and is a powerful H1 AND H2 antihistamine. I loved my Doxepin already but I love it even more now.

Also, I’ve always headed for a warm (not hot!) bath for as long as I can remember. Taking a warm bath and then stepping out into cold air always stops my CPS and even halts degranulation from head to toe for me sometimes and I never knew why.

Now I know, and now you do, too. I hope this helps you and remember, we’re in this mast cell craziness together!

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