How true are the 18 tender pts for FM?

[sfbaygirl]

Just wondering about all the tender points that the websites I have looked at talk about. Are these tender points tender and painful all the time, even when not in a flare?  Some of the sites seem to say that they use a lot of pressure to test them. My Dr. didn't test them all. At first I thought it was CFS, perhaps it could be?  I am so new with so little knowledge at this point.  

I know I have several that I have tested myself. My elbow is so bad, stabbing, I can hardly bend it or pick something up. The last time it was fingers and wrists and shoulders,  always with back, neck and buttocks and thigh pain. Never had burning except once on the bottoms of my feet.  It seems to be something different all the time. Is this normal?  Thanks for your help.

[junie37]

  I agree that there seem to be many , varied synptoms. My Dr first did the " stab your chest/breast bone with his finger " which of course I felt but it was not extremely painful however i had the roaming pain, muscle pain, stinging in back ,ribs, tight ,hard muscles especially if I did repetitive movement.  He ran a test for arthritis ( negative ) and came back to the conclusion that it was Fibro. There are times when it lets up and then seemingly for no good reason starts up again, tho weather does seem to play a part.
                                             Junie37

[sfbaygirl]

Thanks for that info. I sort of got the sense over the months that the points were variable and sometimes not there or in some other spot.  The pressure they put in a spot would seem to make a difference.  My Dr. didn't seem to put much stock in the points and after reading neither did I, although we didn't discuss it. He was more interested in my symptoms over the many months I saw him, which varied alot!

By the last time I saw him, I KNEW I had FM. Perhaps I do have something like you do, but I know it is FM.  At first I thought it was CFS as I slept like 18 hours a day and was in agony.  Perhaps my Dr and I will get to refine the DX and hope like hell that this Lyrica works for me.  Thanks a lot, you seem to know lots about this as I have read lots of the posts here.  

[Curls]

Take the points with a grain of salt.  First of all, it's an arbitrary measure of how much pressure a doctor is supposed to use (not a tool to consistently get a measure.)  You should see the gagets they came up with to do research studies.

The points vary from day to day.  There will be similar points of pain in other areas on some days.  Really it's more the type of pain that's more identifiable.  It's hard to describe but as you read other people's comments or meet in support groups, you'll start to recognize it, and it is different than what a healthy person feels or an arthrisis patient or a site-specific injury.  Also it feels different in different people and in the same person from day to day.  For some form, I wrote a list that included, burning, stabbing, spasms, chemical burn sensation, arthritis type stiffness which then morphed into shooting pains, what I labeled "bone" pain in hands and feet, roaming pains, skin sensitive to touch, ultra sensitive to pressure, ligament pulls, chest pains...which is all I can remember at the moment... and then added that all of that wasn't the problem but really it was the muscluar fatigue that prevented me from just ignoring and pushing through the pain.  (The muscle fatigue is more associtated with cfs, but can be part of fm.  I have "cfs with fm elements.")  

So that should give you an "idea" and also - a sense of taking it with a grain of salt.  I don't always test positive in the pressure points.  

And more interestingly - healthy people who are sleep deprived activate in those same points!!

[sfbaygirl]

Perhaps you can get your Neuro to give you a script for the Neuronton or Lyrica to try it out. Actually I got a free 7 day trial packet from the Pharm. Maybe you can go to the Lyrica website and get that free packet.  I am planning on going slowly with this drug. One everyday for a week, then 2 everyday for a week, then 3 (if I need it).  The packet will last 21 days if you do it this way.  With the way you feel, you need to start ASAP with something!  Pain meds don't do it for nerve pain.

[BrandyF]

hi, i too am wondering about this all! i'm not sure to tell u the truth. but i had my husband do the trigger points on me,& i have 17 of them! suck!!! i have pain without pressure at the back of my head(occipital nerve),neck,both shoulders,both arms,lower back, both hips,throughout both legs into feet,knees,&ankles,& in both breast! i hurt so badly all over!!! but, i have not yet been diagnosed with fm. i am going back to my neurosurgeon next week & i am going to have him refer my to a hopefully good rheumatologist in my area. wish i could help u!! best of luck to you & with your health!!!