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A Very Odd Trigger Point Question

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Posted 9/28/2009 2:57 AM (GMT 0)
A year ago I was diagnosed wih Fibromyalgia (after my prior Dr said absolutly not FMS). I meat all the criteria, EXCEPT I have ZERO trigger point pain! None of my trigger points have ever been painful during examination. Now I DO have painful areas, but they are not where the points should be. I have actually rejected the FMS diagnosis because I wanted to be sure. I felt this last Dr just gave it to me because he didnt have any better ideas and didnt want to really look harder. He never was able to explain it to me to where I understood it.

I am so confused. I moved out of state. I am seeing a DR reccomended by several people I know who have gotten his help with difficult health problems. I am hopeful he can shed some light on my situation and guide me to a specialist in my new hometown.  ( he is in the city where my family lives and has agreed to see me).

I have been seeking answers for several years now and just at my wits end. I just want to move into the right direction for treatment. I am fine if I am giving a firm diagnosis of FMS. I'll completly accept it. I just want to understand this fully and get my questions answered.

Has anyone else been in this situation? Can anyone shed some light on this for me?

Posted 9/28/2009 3:12 AM (GMT 0)
Do you think it is possible that you have chronic fatigue syndrome instead of fibromyalgia? Do you have more fatigue or pain? I don't know that cfs has tenderpoints. But I do know that your tenderpoints don't always hurt when checked. Maybe you should have them checked again.

Best wishes,

Hugs, Karen
Posted 9/28/2009 3:21 AM (GMT 0)
No I dont have CFS. My fatigue comes in very short phases, more what is seen in FMS or auto-immune issues. My biggest complaint is pain and it is the deep pain often associated with FMS. I'm wondering if I may just be a fluke as far as trigger points, or perhpas mine are in different places.. I have no clue.

However, CFS was ruled out pretty early on. I dont have that kind of fatigue. I get fatigued, but we're talking I'll take long naps or need extra sleep for a few days, but then will be fine for weeks or months.
Posted 9/28/2009 1:04 PM (GMT 0)

Hi...I was given a dx about 18 years of fibro with hardly any pain!  I complained of tingling/crawling/numbness sensations on my skin and some weakness in my arms and hands.  I had ever test known to man including heavy metal poisoning.  My ANA's were normal and MRI...normal.  I did have tender trigger points when the rheumy pressed on them but not all of them.  After a year of testing they dx'd me with fibro/myofascial pain syndrome.  I have since gone long periods of time relatively symptom free which is not typical of fibro.  BUT.  Now the pain is here with a vengence and I rarely have a day when I am not aching/burning from head to toe.  I thought they had given me a bogus dx.  I think this disease is very insidious and  none of us exhibit the same symptoms.  I have a friend on disability for fibro that only had two tender trigger points.  I thought three neurologists and two rhuemy's were nuts..  All I can say is mine did not start with pain or fatigue.  It just crept up on me slowly...now I have it all!

Donna

Posted 9/28/2009 1:55 PM (GMT 0)
Hi nomaticmom and welcome. Read the fibro 101 thread, first on first page, it has a list of symptoms but it also contains "what else could it be" and make sure you have been tested for all those disorders.

 

We are all so different in how fibro started and our day to day symptoms. Mine started with fatigue and is still the biggest problem most of the time. It took an all out "been beaten with a baseball bat" flare for me to get a dx. I had already been tested for everything else. Because of the MPS (knots in the muscles) I have sore spots all over my body now that I didn't have when I was dxd.

 

I hope you get the answers so you will know what is wrong with you, we need to know what we are fighting.

 

luv and hugs

Marlee

Posted 9/28/2009 4:30 PM (GMT 0)
Thanks everyone!! I tend to forget that we may not show tender poit tenderness all the time! It's been such a long road. I'll give a proper introduction in a bit, so you can know my story and what's been going on.

I guess it's been hard for me to accept becuase my first dr sad no way was FMS a possibility. Then to get the exact opposite from another Dr. I was so confused. Then that Dr neglected to explain things to me or offer me suggestions. I would talk about pain and fatigue and he'd say "well just excersize more". Okkaaaaaay. LOL I'm sure we've all been there at some point.

I will be talking very candidly with this new Dr. Unfortunatly, he's not in my new home town, so all I can hope from his is just a lead in the right direction once I am fully moved. Hopefully he can get me started on some sort of a treatment program and I can wait until I am settled in before seeing a new Dr.
Posted 9/28/2009 9:54 PM (GMT 0)
welcome, nomadic mom! the trigger points were actually developed for research purposes not diagnostic purposes. so it makes sense that we could have fibro without trigger points [or tender points, whichever].

[marlee, i know that beaten with a bat feeling well!]
Posted 9/29/2009 12:31 AM (GMT 0)
really? I thought you had to have 11 out of 14 tender points to be diagnosed. Good to know. Really puts my mind at ease.

This is an awsome board!!! I have been on other FMS boards and they were sooooo depressing!!!! This one is very positive and very helpful! LOVE IT!
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