sore neck muscles, sometimes just one side from ear down into into shoulder, with the muscles in the neck being the most painful. Has anyone else had such an issue? They are very sore to the touch.

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Are you on statins?  This is a classic sign of statin myopathy.  (And, of course, PPSers have probably about a 50/50 chance of being sensitive to statins.)

No I am not on any statins. It is strange because it is only on the one side.

Consider how you sleep, and how you sit or stay in any fixed position.  I know my right hip gets sore if I sleep too much on my right side.

Mine are sore a lot too and never were before PPS……….

Of course, PPS muscles fatigue much more rapidly, and if you lay in the same position too long, especially with poor bed and pillow support, the muscles will get sore.

Plus, of course, we're none of us getting any younger.

There's maybe one chance in 4 that taking ribose will help this.

Thank you to everyone for their comments, I appreciate the input.  Shari

My neck can get so painful at times it feels like it can't support my head
When really bad it travels down my right shoulder, its been like this for some
years the only advice I'v been given by my doctor is check my pillows and
some very strong pain killers neither give me much relief good luck Shari I know
I haven't been much help just so you know your not alone

Not "accusing" anyone in particular here, but my aunt had bad scoliosis (really bad) and was told by her doctors to NOT sleep on her back, because it was causing bedsores on her spine.  But she did it anyway because she didn't want to mess up her hairdo (which was quite a point of pride with her).  The bedsores got quite bad and were probably a factor in her death (albeit a age 97).

So if anyone there is resisting a change in sleeping position so as to not "mess up your hair", maybe you should reconsider.

Not a concern here, I had to laugh at some of our priorities as we face new challenges, at 97 that is some spirit!

Thank you Kay, mine is exactly as you describe, I just was wondering if anyone found something that worked or what the cause of this would be. I wondered if it was related to walking which I am finding more difficult all the time, do you walk or do you use a scooter or wheelchair?   

Hi Shari I haven't found any thing to help relieve the symptoms, but I do find when I am tired its a lot worse.
I walk with with the help of a crutch

I've mentioned this before, but thought I should reiterate a tad --

I never new I'd had polio, and prior to discovering I did, I found out I have another disorder:  Myoadenylate Deaminase Deficiency (MADD).  This is an inherited disorder of the muscles which has many symptoms similar to PPS muscle pain.  About 1% of the population has it, and the vast majority don't know it.  (And the vast majority of doctors never heard of it.)

In any event, it's easy to diagnose and, within reason, treat.  If you have fairly severe muscle pain (especially in the neck and shoulders), and you take 2-3 grams of "D-ribose" (an inexpensive and very safe "food supplement" available at any store that sells that sort of thing) you will notice (if you have MADD) that there is a DRAMATIC reduction in pain within about two hours of taking the ribose.  "Treatment", then, consists simply of taking regular doses of the stuff (it's a form of sugar found in RNA and used in the manufacture of ATP in the muscles).



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