What does CRPS feel like?
What CRPS feels like varies by person and by episode. Here are some of the symptoms and what they feel like.
Pain vs. Numbness
Pain associated with CRPS has been shown to be worse than most any other pain including childbirth. This is noted by the McGill Pain Index shown below. Pain can be felt internally and externally (on the surface of the skin). If felt externally (skin hypersensitivity), pain is so extreme that even water in the bathtub can can cause extreme pain and be unbearable. A cotton swab gently touching the skin often would register a 10/10 on a pain scale. This hypersensitivity can affect any surface of the body including the tongue. If that happens, eating foods with certain textures becomes very unpleasant. For example, the seeds of a strawberry would feel so painful on your tongue that you couldn’t eat strawberries even if that was your favorite food.
You don’t have to have pain with every CRPS episode. You can also have a lack of sensation which makes a part of the body feel “numb”or “tingly”. This sensation is similar to the “pins and needles” feeling most people get after they’ve stayed in one position for too long but much more intense. When this happens, that body part will become unusable and feel like it’s paralyzed.
Hot vs. Cold
CRPS episodes or flares will typically cause a limb to feel hot or cold regardless of what the rest of the body feels like. The hot flares typically feel like a burning pain/sensation and are much more uncomfortable than the cold flares. The majority of people feel hot; however, most of my episodes were cold ones.
Skin color changes typically accompany flares. Hot flares tend to make the skin appear red and cold flares tend to make the skin appear more purple. The color changes in the skin don’t feel like anything.
Headache, extreme fatigue, depression, swelling, and stiffness are also quite common and add to the discomfort associated with this chronic illness.