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Reduced Muscle Tone in PANS/PANDAS

A major symptom that I have been dealing with lately is reduced muscle tone, and it is thought to be due to PANS/PANDAS, as I am not the only one with the condition who experiences this. I tried to do some online research about low muscle tone in PANS/PANDAS, but hardly any information came up. This is why I have decided to share this post, to allow others with PANS/PANDAS/BGE and episodes of reduced muscle tone to know that they are not alone.

A small percentage of people with PANS/PANDAS/BGE may experience low muscle tone as one of their symptoms.This is interesting because a condition similar to PANDAS, called Sydenham's Chorea, also has low muscle tone as a symptom. Both PANDAS and Sydenham's Chorea are triggered by Streptococcal infections, and involve the Basal Ganglia. Low muscle tone is sometimes called hypotonia. It is important to note, that in PANS/PANDAS it is not a problem with the muscles, but is a problem with how the brain sends signals to the muscles.

Low muscle tone is where the muscles in the body are too relaxed. This can make the muscles appear and feel 'floppy'. We need some muscle tone, otherwise we would struggle to get ourselves up off of the ground.

  • People may feel like it takes their muscles a lot of effort to move and they get tired very easily.

  • People may get bad headaches and neck aches from sitting up and holding their head up.

  • People may need to lay down and lean on things a lot. People may struggle to get up.

  • People may feel the individual muscles in their back tensing when they struggle to hold themselves up.

  • People's legs may sometimes ache if they have been standing for too long.

  • People may feel like they have been on a run when they have only walked a few steps.

  • People may need to 'curl up' a bit when sitting to hold themselves up.

  • People may have exaggerated postures when standing to compensate for the muscle weakness.

  • People may feel sick from the discomfort which just sitting up causes.

  • People may pull a lot of muscles, just from going about daily activities, like lifting their arms up.

  • People may feel extremely floppy.

Low muscle tone is very different from being lazy. It is a medical symptom. Like other symptoms that people with PANS/PANDAS may experience, the low muscle tone can come and go and can fluctuate. Some days people may have no issues with their muscle tone, and other days the muscle tone may be low.

Tips on how to cope on days when your muscle tone is low:

Sit in a chair that has a long back to it and arm rests.

- Use a neck pillow to help hold your head up. (my amazing friend suggested this)

- Take a nap if you need it. Low muscle tone can make just sitting up exhausting.

- Lay down to work if you need to do so. Work on your phone rather than your PC or laptop.

- Lean against a wall when sitting.

I feel it is important to rule out any other issues that may be contributing to or causing the reduced muscle tone, such as genetic conditions and vitamin and mineral deficiencies.

I make reference to 'muscle weakness' in this post, however low muscle tone is not the same as muscle weakness, but I say this as low muscle tone can make us FEEL like our muscles are a tiny bit weaker than usual.

Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatment from a qualified physician, this is to be used for educational purposes only. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.

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