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If YOU were able to test for anything... what would you have checked?

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Fibromyalgia
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Posted 6/16/2017 9:22 PM (GMT 0)
In a discussion with my doctor I told her that during my initial diagnosis with FM years ago I had only a few labs and a Rheumatologist who pushed on my trigger points and BAM...next thing I knew I heard I had Fibro, and it didn't seem like it was a long drawn out process like you hear about most people going through. She immediately looked skeptical of what tests where done and wanted to retest me and double check that something hadn't slipped through the cracks since I was discussing ongoing difficulty with medications. While she fully believes in the diagnosis of Fibromyalgia, she just feels that perhaps I didn't have an adequate amount of studies ran on me to rule out the other possibilities. She told me she's going to take a few weeks to complete some research of her own into what she wants to test me for, but also asked me to look into it and see if I came up with anything I'd like to have her check.

So.... if you had the opportunity ... what specific tests or conditions would you ask your doctor to test you for to help rule out other illnesses?
Posted 6/16/2017 10:43 PM (GMT 0)
Hi, HISdaughter, and welcome! You should be checked for lupus and Lyme disease. These have many of the same symptoms as fibro and they should be ruled out before a diagnosis of fibro is given. There is no good test for fibro but there are good tests for these other illnesses so that's why they should be ruled out first. Plus their treatment is different than what they do for fibro patients.

The tender Point test is being discarded because it all depends on the pressure exerted. Some doctors press harder than others. Now they pretty much go by having pain that is in all four quadrants of the body and also cognitive memory problems.

We have members with both fibro and lupus or Lyme disease. We have had a member diagnosed with fibro but started getting worse and worse. Fibro isn't t considered a progressive illness. She was finally checked for Lyme disease and found that that was what she really had.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 6/17/2017 3:15 PM (GMT 0)
Wow - you have a doctor who wants to work with you and wants to hear your opinion !!!

I had a bunch of blood work done a few years ago. I have a IgG deficiency which makes me not produce antibodies the way I should, and that can include the antibodies they test for in autoimmune issues. Plus I take plasma, so I potentially have other people's antibodies in me.

I would like to go off the plasma for a couple of weeks and retest things. I once had a speckled pattern ANA of 1:80 or something like that. I've had leukopenia and low RBCs on different occasions. I once even had a a kidney issue that was no longer apparent with retesting. All these make me wonder if I'm falling through the cracks. If I have Lupus and I am getting some damage, I want to know. My GP is a prescriber, not much of an investigator. I can only see my specialist once a year.

I did travel to a rheumatologist and my appointment sounds like yours, only without the follow up. She poked me in the fibro trigger points and decided I had fibro (and I probably do) and then told me to see my doc for meds. Yep, 6 hours of driving for that one, an hour in the waiting room and not even 10 minutes with the rheumie !!
Posted 6/18/2017 3:59 AM (GMT 0)
I feel very fortunate to have a doctor (she's the PA actually) who wants to test and find the cause of what's going on. My original FM diagnosis was about 5 years ago in California and it was noticed by a Chiropractor who I was seeing or should I say suspected because my pains were migrating from area to area all the time and I, in certain spots, would cringe at his touch no matter how slight, he said the word and I didn't even know what it was but he told me to go see my regular doctor and ask them to give their opinion on it, which I did, I saw her, she said it wasn't her area of expertise but it did sound like it could be possible to see a Rheumatologist and then I had one appointment that lasted about 30 minutes where I gave my history and got some lab orders, and another that was only about 20 minutes and was told it was Fibro Since I've moved to Washington State after retiring I haven't been able to find a Rheumatologist that will treat Fibro and keep getting the run around either being pushed toward primary care or pain management doctors who both want to keep me on the same things that haven't provided relief. I just found out that somewhere in my childhood I was bitten by a tick but I don't know if I had a rash with it, my father can't remember and my mother has passed away. Can Lyme show up 20 years after the bite? can it be treated still? ... may not be it .. just my mind wondering I guess... but I'm hunting down the labs the Rheumie did so I can take them to my appointment Monday with the PA... just hoping for ideas on what to ask her to add to our list so I can get the biggest bang for my buck smile
Posted 6/18/2017 12:23 PM (GMT 0)
I take over the counter things for my pain. I use ibuprofen with food, Tylenol, magnesium malate, and vitamin D3. I do take one prescription medication, a muscle relaxer called Robaxin, that has made a significant difference in my pain. I also walk daily as a gentle form of exercise and I pace myself when doing things. All of the above has helped me be in control of the pain. Unfortunately, what works for one doesn't necessarily work for another. It's a trial and error type thing with fibro but you will get a lot of ideas on this forum.

Be sure to read Fibro 101. I mentioned this in my last post to you. There are links about the magnesium malate and vitamin D and how they work in the body. Many are deficient in these nutrients and that can cause more pain. All of Fibro 101 is good so do read it.

Do you have a teaching hospital nearby? You could find a good rheumatologist there who would treat Fibromyalgia patients. Some of the doctors you have seen are in the Dark Ages when it comes to this illness. Fibro is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few. There should be no doctors out there not treating Fibromyalgia! It's shameful.

I hope you get a good doctor and some answers. Keep searching for a good doctor. They ARE out there.

Sherrine
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