HealingWell
Search Close Search
☰

Link to article....tender point test is being phased out

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/4/2010 11:52 PM (GMT 0)
A friend of mine shared this article with me.

www.fmaware.org/site/News2?page=NewsArticle&id=9685&AddInterest=1002

I know some people with Fibro don't have all the tender points, so in a way this is a good thing.... but I wonder if it will be over diagnosed now. Or.... maybe it will be even stricter and not enough people will be dianogsed.... it's hard to tell because I am a little confused about the new criteria.

I'm not sure when this will start happening, if this means things will be different for me at my appointment or not. I do have pain in all areas of my body, but i woudl only describe the pain at a level 3 or 4. However, my main concern is sensitivity to touch. It seems like I have allydonia (is that the name)? Sometimes even just a light touch really bothers me. Also, I have found tender spots on my own, but not sure if they are the correct spots for tender points.

Kellie
Posted 9/5/2010 2:16 AM (GMT 0)
It would be horrible for the tender points test to be eliminated.  That plus the fact that I don't remember dreams was how I was diagnosed.  If not for the tender points test, I think I might still be in limbo!

Posted 9/5/2010 4:17 AM (GMT 0)
With me the tender areas always change. I think that every different doctor appt I had different areas that were bad. Because of this (I think) some dr's didn't think fibro. So, I don't think the tender point test would make much difference for me but we are all different
Posted 9/5/2010 4:43 AM (GMT 0)
Here is another link which may be more helpful:

www.fmnetnews.com/basics-news-criteria410.php

It actually has a survey you can take and you can find out exactly how they will be diagnosing.... according to the survey I meet the criteria for Fibromyalgia. I scored pretty high on the Widespread Pain Index, and just pretty high in general. It was interesting to take even though I know I still need to be diagnosed by a doctor.

Even though most of you already know you have Fibro, I woudl be curious for you all to go to that link and find out your score.
Posted 9/5/2010 12:14 PM (GMT 0)
Thanks for the link, bridget. I'm not sure how I feel about the changes to the criteria. I just took the survey and scored pretty high, but a lot of those symptoms could be symptoms of other diseases/conditions, too. I can see how it makes the folks at FMAware uneasy. The tender points are pretty specific to fibro, whereas many of the other symptoms are shared by other illnesses. Until an actual lab test is available, I think we will always be plagued by skepticism.

One of the problems in the medical community in dealing with fibro or other chronic pain issues is the dismissal/disbelief/disapproval of our pain, both by doctors and those around us. confused rolleyes If I say it hurts, it hurts. Period.

I'm interested to see what others think about this new proposed criteria.

Hugs - Austen
Posted 9/5/2010 12:34 PM (GMT 0)
I scored high also. Butl like austen, until the medical community is more educated, there will always be trouble getting an accurate diagnosis. I think this new method should be done in conjunction with the tender point exam for a more accurate diagnosis otherwise pts will be spending unnecessary money on tons of additional testing or other diseases will be overlooked.
Posted 9/5/2010 3:28 PM (GMT 0)
I think this is a good idea.  I feel there are people out there that have fibro but can't get a diagnosis because they don't have all the tender points.  I know I don't have all the tender points but I have had doctors that understand fibro as much as possible.  Plus, even before we are diagnosed, many take over the counter pain killers and that can skew the tender point exam.  

 

I think, if you are suffering with all the pain and have other of the symptoms, and the other illnesses are ruled out, then you should receive the fibro diagnosis.  Too many people are walking around suffering because they didn't have all the tenderpoints and they aren't getting help.  This is just my opinion.

 

Sherrine 

Posted 9/5/2010 3:36 PM (GMT 0)
I receive a subscription to the fma and had seen the article and taken the test.  I was thoroughly disgusted  after reading and taking the test.  I barely passed the test and have had fibro for 40 years.  The problem I had with the test was it was too hard to know how to answer the questions.  They want you to answer for "the past week".

I don't know about you but the last week I have gone from a pain level of a 2-3 to a pain level of 7-8 in the same day!  Then somedays, I was at a 3 all day and other days I was at a 7-8 all day!  Also, the symptoms  are flexible daily or hourly. 

Also the scoring method was rotten.  First you are to count checkmarks, on the next part you count score, and on the 3rd part you count checks AND score.  Brain fog reigns most of the time so scoring wasn't easy. 

As I said, the first time I barely passed, I just took it again and passed easily.  Tell me now--how is THIS going to help the dr diagnois you easily?  When I was diagnoised they used the tender points test and asked me questions about my symptoms.  When it comes to tender points, I'm alot like many of you--the tender points  are there but not always as tender as at other times, plus I have other areas that are extremely tender at times.

So, I think they should stick with tender points AND symptoms.

Yo-yo

Posted 9/5/2010 3:46 PM (GMT 0)
I agree with you all--while I am not even sure what my results would be with a tender point exam.... I think I would want that done as well as this new survey. I answered as best as I could but for some it was hard to know weather to put mild or moderate.... with fatigue it seems to fluctuate for me between the two.... it is my pain that bothers me the most.... and I wasn't sure how to answer on cognitive....I do tend to forget things all the time or get confused easily.... so I asked my husband and he thought it was in between mild and moderate.... so, whatever that means. lol. But, with my high Widspread Pain Index Score (got 16 out of 19).... I would have passed even if I did all mild... plus I have a lot of the "other" sympoms.

My concern is that there may be people who either underestimate their pain or who exxaggerate their pain.... those who are the true hypchrondiacs.... the doctors are putting all their trust in the patients answers as opposed to a real, validated test like the tender point exam.

I guess I don't understand what the big deal is. I understand there are many doctors out there who don't know how to do the exam... well, then a patient needs to find one who does. Obviously, you all had no problem getting the test done. So it is not like it is not available at all.

It will be interesting for me to find out how they will test me. I think what i will do is print off that survey with my results..... but also request they do the tender point exam. If i don't have 11 of the tender points, but still meet the criteria, then I would think I should still be diagnosed with Fibro.... unless the doctor says there are more lab tests to be done.... then I would be happy to get them done because I want to have a correct diagnosis.
Posted 9/5/2010 4:33 PM (GMT 0)

Even being positve to all the tender points my first Rheumy was reluctant to dx me with fibro.  But that was many years ago and the term Fibromyaglia had not even been coined yet.  She dx'd me with Myofascial Pain Syndome and 'possible fibrotitis'...which is now Fibromyalgia.  Fibro was an 'eye roller disease' way back then, more so than now.  After ruling everything else out, my new Rhuemy uses the tender point test for a final dx.

Donna

Posted 9/5/2010 7:14 PM (GMT 0)
The doctor I have now used the tender point test for the final dx. Doctors before didn't use it and shrugged off my symptoms. All had given me all the tests to rule out anything else. I think the tender points are a good tool to help dx, at least in my case.
Posted 9/5/2010 10:22 PM (GMT 0)
well, according to the old criteria, my husband has Fibromyalgia, but his doctor STILL would not diagnose him. He got all the usual blood work which was all negative... then his dr. did the tender point and he got 14/18.... plus he had widespread pain all over (for about 3 years at that point).... he has other issues too. But his doctor STILL woudl not diagnose him....he wanted my husband to see get a heart test... why, I don't know. Why even have a set criteria if you are not going to even go by it? So my husband never got the heart test because he was tired of tests and didn't think he needed it. So now he is still stuck in limboland, but since he passed the tender point test, I am just assuming he has Fibromyalgia, and we talk like he has it.

Now, it is weird with me having the same symptoms that he has. But he knows I am not just making it up to get the attention . :) Too bad we can't both see a Rheumy together, he might think we are crazy. lol

I am different then my husband though-- he is more relaxed... i feel like I HAVE to have a diagnosis. I get obsessed too easily.
Posted 9/6/2010 1:10 AM (GMT 0)
I was dismayed to find out that foot pain and head pain were not on the WPI list. They also did not have feeling of heavy limbs or skin sensitivity or other things that go with fibro. I think it is not that good of a test. Is it going to be the real criteria test?
Posted 9/6/2010 1:56 AM (GMT 0)
I took the test also stated I had fibro,  your right the skin issues weren't on the test which from what I understand that is one of many symptoms, which I have too.

Kellie, (that is so odd typing my name)

I want to know why I was a strong healthy woman last year and this year I feel like I have aged, for some odd reason I thought I would have these problems when I'm older, someone lied to me and I want a refund on this body!!!!!!!!!!!!  tongue    Honestly, I'm too the point I am ok with what is happening to my body, I just want a name for it that doesn't include crazy woman with a mid-life crisis attached to it.  smilewinkgrin

Posted 9/6/2010 5:32 AM (GMT 0)
yes, I agree... I have sensitivity to touch... plus hand pain and foot pain (though the foot pain may be from my bulging disc in lower back). I don't care too much for the test.
Posted 9/6/2010 8:28 AM (GMT 0)
ok, as I imagined, my scores were off the chart as well. I believe the tender point exam should be used in conjunction with any other criteria, however, the way my Rheumy explained to me and in articles I have read, this test is so misunderstood that often times it's without merit as well.

This tender point was a "test" in the beginning. In order to get INTO the STUDY, you had to have the "number" of points. This did not mean you did not have fibro, it only meant that you were not considered a candidate for the study. After this point doctors began using the exam and it evolved to being determined that if you didn't have that number of tender points your did not have fibro. Many people WITH fibro are walking around because they did not "QUALIFY" with the right number of tenderpoints. That is not what this test was meant to show. It's not a credible test in the pure sense. Many of us have what I would call a "good day" and may be examined on that day and NOT hit the magic number. (wish I could say I have had one of those days lately) Many of us just long for a tolerable day.

Our medical professionals must be educated and must take this seriously or we will not see any changes in attitude or treatment. I am in the middle of changing doctors right now because of a move out of state. I should not be scared to death about the prospects of a) finding a doctor that is educated and has compassion and the ability to treat b) the prospect of having to find a doctor that I can manipulate into treating me the way I need to be treated in respect to prescribing the right combination of medications or even being willing to continue on the treatment path that my EXCELLENT Rhuemy has started. Unfortunantly, this is the reality and it sucks...

New criteria or old, something has to be done to change the thinking of our medical professionals.
Rambling now so I will be quiet...LOL
Posted 9/7/2010 6:06 AM (GMT 0)
I took the test online and scored 12 on the first part and 8 and 2 on the second part, so I met the criteria for FM. You're right, I got confused on the 2a test part where it was scored differently. I had to read that several times before I got it. I did send a note telling them what I thought. I told them that the test does not take into account the skin sensitivity that comes with FM and that sometimes even having bangs makes my forehead hurt. I also told them that I was exercise intolerant, that I don't get a natural high from exercise like I did before I got sick. And I also told them that the test doesn't take into account how widely pain scores can vary during the same day. Most days I wake up with a 7-8 score and have to immediately take something for pain before I can function. If I don't overdo it during the day, by the evening my pain might be a 3-4 and manageable with medication.
✚ New Topic ✚ Reply