I am looking for info and research for total body ache with PPS.  My whole body is either stressed because of PPS or my muscles fatigue quicker because of PPS. I meditated but the sense of ache become stronger.  My BP is fairly normal but my pulse rate is high about 110 to 124. even when I exercise the ache does not go away it is ever present.  For me this is new.  Any insights.  Barbara

Views: 250

Reply to This

Replies to This Discussion

Mine is ever present too even when I try to roll over in my sleep..............

That was me about eight years ago.  Lipitor pushed me over the edge, but I had been getting there for a couple of years, probably.  I stopped all statins (and eventually gave up on most other cholesterol meds) and started experimenting with various supplements.  For me D-ribose worked wonders for the pain, but others have reported less success with it.  Others take L-carnitine with some good reports.  CoQ10 may also help.

You unfortunately have to be your own doctor and own guinea pig here -- there aren't really any doctors who know how to deal with this.

I tried d-ribose, didn't notice much, I do take carnitine and coQ10 and I take no meds whatsoever and still have pain, still searching!
I too have pain and ache that wakes me as I turn.  It is a heavy weakness with pain. Guess we are all learning to deal with this. Thanks for the responses

Hello Barbara, thank you for posting this as total body aches is something we all deal with I'm sure, some more often than others. I am 59 and for right now, grateful the total body aches don't consume me very often. For me it has been when the weather is really damp, rainy and cold. I have the total opposite experience when the weather is sunny and warm (for the most part).

I am afraid to come off the cholesterol med as I am fighting to get my cholesterol numbers down. My cholesterol numbers are not not bad but I hesitate to stop taking the medication. Maybe as I age I will re-consider as I am finding after a certain age  all things PPS are changing more dramatically each year. Fatigue is a big issue but I have finally realized I need to do this when I feel the need to feel re-energized.

Funny but good thing for me, when I get the total body aches, Tylenol works well for me, at least it lessens some of the throbbing. I can't take prescription pain meds at all. Except for Darvocet but as of about 6 months ago, is off the market! :L(

Take care Barbara, Paula

Boy, it sounds like alot have all over body aches- I also get pain and to try and determine if it is muscle, nerve and bone pain- very difficult.. I know my knee is bone pain but some of the other areas at times feels that way also- I do take pain meds/ I have to because nothing else touches the pain- in other words I would not be able to function each day- I have to because I am also a care giver to my husband.  Even with alot of help coming in- it is a 24/7 job.

I do notice like Paula said weather plays a big part in all over aches- we have alot of humidity here in NYS- plus cold winters, etc.  Bring on lots of aches- it is the deep down pain I am concerned about.

I have to start with a PT to figure out what exactly is causing the pain especially in my back.  Dx'd with Osteoarthritis, Scoliosis, DDD and spinal stenosis- all over pain from shoulders, neck down - so hopefully I maybebe able to try a  TENS unit(not sure) If it were up to me, I would live in my tub-lol.

Hugs and lets keep trying to help each other


I'm lucky in that regard -- not a trace of arthritis at 62.  I have a bad knee, but it's bothered me since I was a teen and hasn't gotten much worse (though it would get worse if I didn't do some special therapy for it), and I do get normal backaches (which exercise helps prevent), and then of course there's my wrecked rotator cuff that is still giving me some pain, but mostly no bone/joint pain.  So pretty much anything I get is muscle pain, and it's therefore easier to recognize.

I did discover, starting about 8 years ago, that cold made the pain worse, especially in my lower legs.  Used to wear shorts all the time (in winter, in Minnesota, even) but now they're reserved for warm weather.

It's so interesting to me how we can suffer from the same types of pain. I too have aches all over my body. I try to avoid the pain, by not sitting or laying in the same posistion for too long, I avoid cold enviroments as much as possible, to avoid getting horrible muscle pain, so painful sometimes it brings tears to my eyes. I take advils and use the heating pad often. I also began taking all natural b-12 vitamins it has helped me so much, i haven't experienced extreme fatigue,since taking them. I can't say I have tons of energy, but I don't get as tired easily.. :) thank you all for all your experiences and suggestions, they are so helpful....
Susan, is the b-12 the kind that dissolves under the tongue that you take or is it a regular vitamin capsule?
It is a really small tablet, that dissolves under the tongue, to me it resembles a baby aspirin. I bought them from a health food store.
Thank you Susan and I get the muscle pains that bring tears to my eyes to.......
Thank you all so much for your honesty and personal insights.  I guess our pain is individual but we all have pain.  I have had weakness and fatigue but recently the pain is constant. I sometimes even shiver and shake and feel like I am going to fall.  More research  for me and test over counter vitamins.  I am keeping a log of pain level and when it happens.  weather plays a big part as does eating sugar and carbos.  Will keep you posted. And agian thanks for responses. Keep posting as I am sure we learn much from each other.



  • Add Photos
  • View All

Spread the word about PolioToday.org

Post a flyer: You can let others know about PolioToday.org by downloading this flyer and posting it on a local bulletin board and/or bringing it to your local PPS support group.

Invite your friends: You can easily send out email invitations to join PolioToday.org

© 2018   Created by Salk Institute.   Powered by

Badges  |  Report an Issue  |  Terms of Service