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Old 09-09-2010, 01:06 PM   #1
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All bloodwork is normal but I have no Trigger points!

Hi,

In Sept 2008 I woke up with widespread muscle pains. Basically out of nowhere. Every muscle hurt. For months the intensity changed from mild to really really sore! After 3 months, it seemed to go away but it came back in some form of intensity and still does up till now.
It waxes and wanes. Some days I forget I have it and then Its back.

Since 2008, my Dr has ran many blood tests, RF, ANA, DSDNA, Aldolase, CPK, Sed Rate, Emg's..........honestly too much to list. Ive had every blood test. In fact I am now low on Iron because of all the testing.

Ive been to rhematologists who say that there really arent any trigger points. Ive been tested for Lupus, MS, MG, even had a bone marrow test. Went to a specialist Neuromuscular Dr who tested for Lou Gerrigs.

I have no answer.

The best way I can describe is, my muscles feel so tired and sore. Sometimes its all at once (most). Thighs, calves, upper arms, sometimes lower arms, my shoulders. Strangely my joints hurt too. (hands, wrists, anlkles, etc)
Sometimes I say it feels like when you get a tetanus shot (that sore feeling) in all my muscles.

Sometimes its migratory and as I said, it waxes and wanes. Two weeks non stop, one week not so bad, 1 month just awful! When I rest, I feel a bit better.
When I type, my muscles feel so tired. Repetetiveness bothers me most! When I walk, the same. After washing the dishes, I can feel the muscles exaughtion.

Right now, in my upper arm muscles (where you'd actually make a muscle to flex) and also my thighs, if I poke it in either arm or thigh, it feels painful.

I dont get headaches.
Im not sure if this sounds typical of Fibro..........

Please, share your thoughts, your personal stories, how your muscles feel, how you were diagnosed, ect! Please!

Thanks!!
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Old 09-09-2010, 01:33 PM   #2
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Re: DR Says All Bloodwork is normal but I have no Trigger points!I NEED YOUR THOUGHTS

Hi!! I am fairly new. I have endometriosis, TMJ, and IBS (have had for yrs.) Don't know if they are related or not. Some literature says they are. I have been suffering from abnormal fatigue for a few years also. My mother had a stroke in May 2008. She also had COPD. The stroke left her bed bound and after hospitalization and rehab, I moved her into my home with me and took care of her (and worked full time, with some help from my sister in law and hubby, but I was primary). In July 2009 she was diagnosed with stage 4 colon cancer. She passed away at my home by my side Nov 2009. I got pneumonia Feb 2010 and took Levaquin. About 9 days into the antibiotic and pneumonia, I started hurting all over. Bad. Dr thought mabye it was a tendon rxn form Levaquin. Thant it would heal. Welll, it never did. Fianlly was referred to a pain clinic by my Dr. Aug 2010. That is where fibro came up. They happen to have some sort of specialist there who treats it and I am to see him next Thurs. My whole body hurts all of the time. I am really stiff in the mornings when I get out of bed (so much so that I will fall if not careful). My blood work is all normal. I hurt all over, but it also moves around (i will hurt worse different places different days). My tender points move around (I am not so sure about having those points as a definitive diagnosis....but I guess they have to have something). I think that fibro is an atypical syndrome in itself. I wish I knew more to tell you other than my experience. You have come to the right place, though. This board is GREAT! Hope you get some good answers!!

 
Old 09-09-2010, 02:37 PM   #3
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Re: DR Says All Bloodwork is normal but I have no Trigger points!I NEED YOUR THOUGHTS

Confused, the fact that a doctor couldn't figure it out might be the best indicator for fibro. The fact that the pain is setting up like cement AND is waxing and waning are, again, great indicators for fibro. You're in the right place, I'm guessing. The cement pain, for me, sets up upon first rest from activity, usually serious housecleaning or shopping. The wax and wane stuff, for me, can affect one area this week and another next month; i.e., today my right hip can hurt awful; next month, it might be my left one -- making me look like a loony who is forgetting the right lie. Wax/wane + widespread pain + baffled doctor = fibro.

 
Old 09-09-2010, 08:06 PM   #4
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Re: DR Says All Bloodwork is normal but I have no Trigger points!I NEED YOUR THOUGHTS

confused, your symptoms sound very familiar to me. I use to say my skin hurt, because just the slightest touch hurts in my arms legs etc. I have sharp shooting pains, I have joint pain and muscle weakness and fatigue. It all adds up to Fibro, CFS, CTD, the list is too long. My description of fibro is it is like having a bad flu where you have fever and aching and the pain of overworked muscles combined together.

Glojer

 
Old 09-10-2010, 10:14 AM   #5
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Re: DR Says All Bloodwork is normal but I have no Trigger points!I NEED YOUR THOUGHTS

I lost count of the number of doctors I saw that said I was fine, all my blood work was normal and none could account for my extreme pain!

I was finally dx with fibro in '98, my 'pains' started in '84 after a bout of German measles. In the beginning I'd have a new flare for a week, then a quiet period of a few weeks or even a couple of months then a shoulder would flare, then an ankle.. it seemed that every joint took turns in having a flare!

Doctors insisted noting was wrong.

Finally the pain got so bad I had to give up work and I insisted on seeing a rheumatologist who dx'd me with fibro. By then I did have the tender points..not sure if I had those in the earlier years as I had never heard of them.

A classic sign of fibro is pain that migrates around the body, different types of pain, deep burning, sharp stabbing or shooting and dull aching.

Fatigue, fogginess, sleep problems, IBS etc etc,

I too have the poke and it hurts like crazy syndrome.. touch can be painful as fibromites are sensitive to touch, taste smell, noise and lights.

Sure sounds like fibro to me hon, keep trying to get diagnosed and look up tender points and have someone test yours again for you (hubby/friend - just apply gentle pressure to the area, if it burns like crazy then it's probably fibro!)

Our symptoms vary daily.. it is common not to have tender points show up one day only to be there the other 364 days of the year!

 
Old 09-10-2010, 12:34 PM   #6
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Re: All bloodwork is normal but I have no Trigger points!

I have all the symptoms of fibro but only 2-3 tender points (you are supposed to have 11 of 18). I have no idea if the physio wasn't touching right (strongly enough) or what BUT I have pretty much every other symptom going (IBS symptoms, fatigue, stiffness, sensitivity to noise,light etc..... name it I pretty much have it). I have what would be declared "mild" fibro, I have had this for about 10years now (finally got doc to admit maybe I am NOT just depressed, if I was that depressed I would have been in hospital at this point!). The physio that assessed me (she has been doing this for about 10 years now) checked for the tender points, my GP did not!

My physio was saying that they are thinking of getting rid of the tender points for diagnosis, the tender points were developed to help with screening for a research study (if you had them, in, not out) and were never really meant to be used as a diagnostic tool but over time they became the gold standard.

What I DO have is multiple TRIGGER points. These are extremely painful, sometimes are accompanied by knots in my muscles. You have to press pretty hard (but not hard enough that the pressure would be causing the pain) to have them hurt sometimes but other times, you can BRUSH those spots and I jump.

I also have all normal bloodwork (other than a low serum calcium level and a border line high CRP (high is over 10 mine is 8.64, close enough in my mind to be something to watch). My rheumatoid factor is negative, my IgE as well... so I am floating in no mans land as well! LOL

I am sticking with the fibro diagnosis, though personally I am leaning towards chronic myofascial pain syndrome. Depending on what circles you are in some will say different disease, overlapping symptoms and others will say just another name for fibro... LOL

Since I don't seem to have the debilitating symptoms that most on this board have, I seem to waffle about whether I truly have fibro or not. I can work, I can do housework (though it is difficult and I fatigue easily), I have stopped being able to get it together enough to work out within the last 2 years or so but I am still high functioning. I tried Lyrica with minimal relief, HATE anti-depressants and find it difficult to remain compliant with takin them (if something worked longer than 3-6 months I might keep taking it, but nothing does). I am getting my nerve up to go back in to see my GP (I stopped my meds and she is going to FREAK) and see if she will refer me to a physician here locally that has opened a pain management clinic (anaesthesiologist). He deals with not only chronic pain but myofascial pain. I am hoping that if I get in to see him we can confirm exactly which of the 2 disorders I have and then work out a treatment plan. I prefer aggressive treatment (I have trigger point therapy monthly and it does help, though was extremely painful at first). If I see him I am hoping that we can come up with a NON DRUG related treatment protocol (I don't react strongly to meds BUT I am young enough that some of the less noticeable effects, such as weight gain, loss of libido totally drive me and I stop the meds). I am not against meds and I would be happy to take them, IF THEY WORKED. On a side note with the Lyrica, I would have had to stop taking it anyhow, I was starting to have swelling of my hands and feet, extremely painful and I work with my hands and on my feet, can't have them out of commission!



So, for you....... could be you are like me, and have fibro without the tender points..... or have CMP (same symptoms but TRIGGER POINTS, not tender points)...... or something else altogether that they haven't tested for yet. Confuse yet???? I know I am !

Good luck!

 
Old 09-12-2010, 06:36 PM   #7
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Re: All bloodwork is normal but I have no Trigger points!

what about nausea, tingling on top of head, cold feet, chills and then hot, headache, feeling sniffles in nose, off-balance, tmj symptoms,some joint pain, shortness of breath, extreme neck pain, stomach issues (ibs, chronic indigestion, hiatal hernia,), lower back pain, hips sometimes ache, just to name a few. just feeling sick and weak and feeling of having a nervous breakdown with no diagnosis after going to every dr. under the sun. Lala

 
Old 09-12-2010, 06:46 PM   #8
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Re: DR Says All Bloodwork is normal but I have no Trigger points!I NEED YOUR THOUGHTS

Quote:
Originally Posted by Glojer View Post
confused, your symptoms sound very familiar to me. I use to say my skin hurt, because just the slightest touch hurts in my arms legs etc. I have sharp shooting pains, I have joint pain and muscle weakness and fatigue. It all adds up to Fibro, CFS, CTD, the list is too long. My description of fibro is it is like having a bad flu where you have fever and aching and the pain of overworked muscles combined together.

Glojer
Your description is perfect. By the end of every day....sometimes by late afternoon...I feel like I'm getting flu....the fever and the aching....the pain and all. It's just awful. The rest of the time it just hurts and makes me miserable usually w/o fever.
sharon

 
Old 09-13-2010, 10:33 AM   #9
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Re: All bloodwork is normal but I have no Trigger points!

Yup, sometimes I get home after work and wrap up in a blanket, I feel like I am getting the flu, think, geeze maybe I am getting sick, but sure enough, wake up next day and flu symptoms gone, LOL.

I was getting alot of headaches but my therapist managed to release alot of the trigger points in my neck and back and those have stopped for the most part.

 
Old 09-13-2010, 12:51 PM   #10
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Re: All bloodwork is normal but I have no Trigger points!

Oh sometimes the headaches drive me up a wall. They come from the back of my neck and shoulders. I need to get back to the massage therapist. Seantal, what kind of therapist do you use for the trigger point release?

 
Old 09-13-2010, 01:01 PM   #11
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Re: All bloodwork is normal but I have no Trigger points!

You are in the states, but I use a massage therapist that specializes in myofascial release technique (can be extremely painful).

I would look for someone (physio, massge therapist) that can check you for trigger points (I used to get straight massage but they didn't actually get rid of the headaches for more than a the time it took to get the massage, right afterwards the headache would be back). It depends on how much of the fibro symptoms you have, alot of the people on here wouldn't be able to handle trigger point release, though my therapist would find another way to try and release the area if I found it too painful (I realized that if I just let him do his thing the pain would start to relieve within about 30-45 seconds (can feel like a lifetime), when it gets to half he adjusts his pressure again and again I wait until the pain goes away or halves. It seems really wierd (he basically finds the "trigger" spot, digs in and waits until the pain starts to drop) but finally I can work on a computer all day and not have a headache for 3 or more days!

I got lucky with my guy. I started with an osteopath but found he was too gentle and it didn't relieve me at all, so then I was researching myofascial pain, heard of trigger point release and researched my area, he was one of the only guys who popped up as performing the technique (he also performs lymphatic drainage on my since I seem to have some build up in my clavicle area). I have a friend who is a massage therapist as well and she thinks he is a GOD, LOL it was nice to have a great review from someone in the business!

He is also great with doing research on fibro since he sees a few other sufferers.

 
Old 09-13-2010, 01:34 PM   #12
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Re: All bloodwork is normal but I have no Trigger points!

Thanks seantal for the info. This sounds like something I need to check into. I'm doing PT for my shoulders right now, but any kind of help for my headaches is worth a try.

Glojer

 
Old 09-14-2010, 06:51 AM   #13
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Re: All bloodwork is normal but I have no Trigger points!

Glojer, I had a student physiotherapist sit in on a group I was going to for Fibro and she mentioned that are starting to teach physios a little bit about myofascial issues, your physio might know something about it and if they can't help might know of someone that had experience.

 
Old 09-14-2010, 08:10 AM   #14
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Re: All bloodwork is normal but I have no Trigger points!

Quote:
Originally Posted by seantal View Post
You are in the states, but I use a massage therapist that specializes in myofascial release technique (can be extremely painful).

I would look for someone (physio, massge therapist) that can check you for trigger points (I used to get straight massage but they didn't actually get rid of the headaches for more than a the time it took to get the massage, right afterwards the headache would be back). It depends on how much of the fibro symptoms you have, alot of the people on here wouldn't be able to handle trigger point release, though my therapist would find another way to try and release the area if I found it too painful (I realized that if I just let him do his thing the pain would start to relieve within about 30-45 seconds (can feel like a lifetime), when it gets to half he adjusts his pressure again and again I wait until the pain goes away or halves. It seems really wierd (he basically finds the "trigger" spot, digs in and waits until the pain starts to drop) but finally I can work on a computer all day and not have a headache for 3 or more days!

I got lucky with my guy. I started with an osteopath but found he was too gentle and it didn't relieve me at all, so then I was researching myofascial pain, heard of trigger point release and researched my area, he was one of the only guys who popped up as performing the technique (he also performs lymphatic drainage on my since I seem to have some build up in my clavicle area). I have a friend who is a massage therapist as well and she thinks he is a GOD, LOL it was nice to have a great review from someone in the business!

He is also great with doing research on fibro since he sees a few other sufferers.
I'm really glad this is working for you. I don't think I could tolerate massage though. I hurt so bad I can't be hugged....I can't imagine someone massaging my body. I would probably scream the whole time. Sometimes my blankets hurt me.
sharon

 
Old 09-14-2010, 09:28 AM   #15
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Re: All bloodwork is normal but I have no Trigger points!

Sharon,

That is why I am leaning towards not having fibromyalgia but myofascial pain syndrome. I do not have a problem with touch (I sometimes don't want to be touched, but it isn't painful in any way, only the insides of my knees are a NO TOUCH zone, the only place I have the tender points). I love being massaged, I have no problem with deep tissue massage. There have been a few times that I have been extremely sore afterwards (my legs were so bad one day that I could barely walk) but otherwise my skin doesn't hurt. My massage therapist does have different treatment options however for those that cannot handle the pain (there are days when my trigger points are just too sensitive and he works around them rather than directly on them).

Though, without having the sensitivity to touch of fibromyalgia I do seem to have many of the other symptoms...... IBS issues,fatigue (extreme some days), flu like symptoms (with no fever),muscle stiffness and joint pain, depression (well hurting for over 10 years would make anyone depressed, at least a little bit!).... the list goes on, depending on the time of year, day and how I am holding my toungue!! Somedays I can't even keep track and other days I feel almost normal. When I finally managed to get my GP to really listen to me I had 2 pages double sided with my various aches pains and complaints.... everything was tied into each other as opposed to each complaint being for something different.


I am still researching and hoping for a clearer diagnosis or at least clearer treatment options since I know I am due for a crash anytime now with the fall hitting then winter (since I live on the east coast it is a cold wet wet wet winter most years). I would like to remain off of pain meds and try to get to the root cause of my issues then work from there changing, treating those areas in the hopes of taking care of the symptoms. I have no issues taking meds if they work (and so far nothing really seems to work or if it does only for a short amount of time!).

Chantal

 
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