Old 10-23-2013, 12:31 PM #1
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Default Negative to the pressure point test, but 4 doctors still suspect I have fibro

Hello all. I'm a 40yro woman and was diagnosed with the autoimmune disease Hashimoto's thyroiditis back in August. However, now that my thyroid hormone numbers have been brought to normal levels, I'm still suffering from a progressively worsening collection of symptoms. I joke that it's like there's a grab bag of about 20 symptoms, and every day my body is reaching in and grabbing anywhere from 3-10 of them.

Those symptoms include:

* Swings of significant fatigue (like, 3 naps a day + early bedtime, feeling drugged fatigue) and insomnia
* Severe headaches (back of head going forward)--sometimes causing nausea and vomiting; these are becoming more and more frequent
* Joint aches and body aches (throbbing all over)--these are usually daily, but some days (like today) they are a whole lot worse than others
* Mood swings--particularly irritability and depression
* Heart palpitations and "hiccups," sometimes very uncomfortable; this actually was the first problem that sent me to a doc, which resulted in several visits with a cardiologist. The conclusion was my heart itself is fine, but "something" is triggering periods of rapid heart rate. Hashimoto's makes some sense for this.
* Swelling hands and feet
* Tingling tongue (that's just a weird one, relatively new in the last 6mos)
* Fuzzy/foggy headed; feels like I'm under the influence of something when I'm decidedly not
* Feeling of pain and pressure and base of head/neck, often extending into jaw and top of shoulders and neck
* Pressure and tension in chest
* Hair loss
* Upset stomach, loss of appetite, vague nausea
* Swings of constipation and frequent bowel movements
* Dry skin
* Pelvic pain
* Lightheadedness; actually nearly passed out at work in May and took a while to regather myself; this continued off and on for days. I wound up in the ER where they ruled out a heart attack and sent me home.

It's gotten so bad I've been pulled off work. I'm a middle school math and science teacher and I love what I do, but I just couldn't anymore. I hit a wall, and it breaks my heart. But I come home to two young sons (ages 7 1/2 and 3 1/2), and I had no energy left for them. Right now I'm running the gauntlet of specialists and blood tests and such to see if there's something along with the Hashi's.

My bloodwork showed I have an elevated rheumatoid factor of roughly double to high-normal range; normal is something like 0-13, and the two times they checked it, it was something like 26 and change. This, and my continued complaints despite normalizing my thyroid, is what sent me to the rheumatologist.

My OB/GYN, GP, and endocrinologist all suspect fibromyalgia. The rheumatologist does as well. She ran a very large collection of tests on me, checking for multiple other types of antibodies, but she warned me to be prepared for them all to be normal--which would match the fibromyalgia diagnosis. My RF was again elevated, but other than that, everything was normal, as she said. I do not present like I have rheumatoid arthritis at all. My pain is deep in the bones and is everywhere; my joints aren't hot, red, or tender to the touch and never have been. I have my bloodwork results now, but don't go back to the rheumatologist until Nov. 6 to go over the results as well as (I'm anticipating) getting the fibro diagnosis.

The thing is, she did the pressure point test and I wasn't positive for more than like 4 of the points. But, she told me that recent research says the pressure point test has been ruled insufficient in diagnosing fibro. I was able to find a few medical journal articles online detailing this very thing. Still, it makes me circumspect. Does anyone have experience with this sort of result?

Some of the points she pressed were tender, but weren't OW! painful. I didn't tell her the tender ones because I assumed she was looking for the ones that made me yelp (wrists and just below the collarbone did that). Maybe I was in error?

Thanks so much in advance. I'm now exhausted and shall nap. I'm sure you all understand.
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Old 10-23-2013, 02:24 PM #2
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

I was diagnosed with the pressure point test about 20 years ago. You will find many on here, who haven't passed that test and still been diagnosed. If 4 doctors are all pointing to this, then I'd consider it.
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Old 10-23-2013, 06:34 PM #3
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

Well, anything that's uncomfortable is something you need to talk to her about. It doesn't just need to be "OW!". Tender is what they're looking for. So, let her know that they were tender. I'm pretty sure, however, that you can have fibro and not hit all of those points.

What is up with the RF factor? Your post makes it sound like your doctors don't think it's a big deal, which I don't understand. Why would they not look at that more? Wouldn't your RF factor lower if your thyroid is under control now? Have they done an ANA and ESR too?
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Old 10-24-2013, 09:51 PM #4
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

Uhm it's strange you're still suffering from hairloss despite the fact your levels have been brought to normal... basically there are several diseases that could be causing those symptoms. Have you checked your adrenal glands? Those can give you so much trouble! Specially when they start producing too much cortisol.
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Old 10-24-2013, 10:59 PM #5
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

To be fair, I'm not sure the hair loss has continued. I never lost it in clumps--I just looked at my bangs one day and was horrified how much of my scalp I could see.

My rheumatologist ran a huge series of tests a few weeks ago (including ANA and RSR, both negative), as did my GP back in May (which is what found the Hashimoto's). I am negative for Lupus and Sjogrens and really everything else she checked, and while I have a positive RF, don't present at all like I have RA, except for the joint aches. However, that pain is vague and deep and systemic, not sharp and specific. There is no redness, heat, or swelling in the joints. The rheumatologist gave me the impression it was not particularly concerning to her. Maybe the number was high, but not drastically so?

I asked my endocrinologist specifically about the adrenals (as well as a few other things, like parathyroid) on Tuesday. She said my bloodwork didn't indicate anything suggestive of it, as my electrolytes were all normal range. Not just normal, but not even close to high normal. Also, when cortisol is released in adrenal insufficiency, so is melanin, and I don't have the darkened skin, darkened gums, darkened lines on my palms that come with it, nor do I have the weight loss commonly seen with it as well.

I'm so tired of trying to figure out what's wrong. Fibromyalgia, by description, really does sound like what I've been dealing with--particularly what I've read about sleep, IBS, exercise, and the aching, but really, nearly all of it sounds familiar.

I got my thyroid bloodwork back today--everything is now in normal limits, which suggests what all I'm feeling is unrelated to the Hashimoto's. This, to me, more or less confirms the fibromyalgia. :/
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Old 11-30-2013, 09:05 AM #6
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

My sons are also 3 1/2 and 7 1/2. It's very hard to hear them say, "Mommy, does your neck *still* hurt? Why are you sick so much?" Sometimes they put out pillows for me on the couch and pat my head. I feel like crap about it.

Anyway, I don't have all of the pressure points either, but any and every other possible symptom on the planet I do have. Some days I have medium-ow spots, and I've never had the knee spots.
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Old 12-02-2013, 07:16 PM #7
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

Yeah, I agree. If four doctors suggest it, then it is something I would consider. I am not sure what the pressure point test is, I will have to look it up. I am going for my own second opinion on a strange lump. It is good to be skeptical, within reason. A diagnosis leads to a better life, so that is really what is important.
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Old 12-17-2013, 11:06 AM #8
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

You could absolutely still have FMS. I know someone who was diagnosed with no pressure point problems on testing. They are now saying that this reallly is not an accurate way to conclude that someone does not have Fibro.
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Old 02-21-2014, 12:30 AM #9
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Default Re: Negative to the pressure point test, but 4 doctors still suspect I have fibro

Quote:
Originally Posted by Fran View Post
Yeah, I agree. If four doctors suggest it, then it is something I would consider. I am not sure what the pressure point test is, I will have to look it up. I am going for my own second opinion on a strange lump. It is good to be skeptical, within reason. A diagnosis leads to a better life, so that is really what is important.
If four doctors suspect it I would bet they are correct.
Most of the time doctors deny it is fibro.
Fibro is a strange disease but the more sufferers you meet you'll see that the symptoms
are all the same though vary in intensity, but live with it long enough and you'll enjoy them all.
I always had good eyesight and read that some people's eye glass prescriptions change a lot
with fibro and sure enough, some days my eyes suck but in a few day are back to good.
Strange stuff.....
Get educated and it sounds like you have good doctors so work with them on the assumption it is fibro and see where it goes.
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