I have a few vexing questions!

As many of you who have been on this board for a couple of years since my first appearance will be aware, in August 2007 I was diagnosed with Peripheral Neuropathy due to symptoms of body wide parasthaesias and dysathaesias..

Many tests ensued, of which all were, by and large, negative.

Time has moved on and the neuropathic symptoms have remained, along with worsening pain but more of the 24/7 muscle aches/pain and stiffness variety. I have also earlier this year been diagnosed with fairly severe Gastroparesis and Oesophageal paralysis.

Several doctors have felt that I have Fibromyalgia (because of multiple compatible symptoms) and I have now been referred to a 'relatively' expert Fibromyalgia specialist here in Melbourne next week – hopefully the last of many specialists!

Much is yet to be empirically discovered about Fibromyalgia, however one current stream of thought is that Fibromyalgia is a syndrome of pain sensitisation. http://www.pathoutofpain.com.au/info...der_fibro.html

Does this mean therefore that the pain I am experiencing is neuropathic pain but not Peripheral Neuropathy per sé? What is the technical difference I wonder?

In the current state of knowledge of Fibromyalgia, it is considered a complex disorder of possibly several bodily systems such as Endocrinological, Rheumatological, perhaps Immunological and Neurological. Therefore should one expect that a Neurologist would be somewhat informed enough to proffer a possibility of Fibromyalgia as the cause of a person’s symptoms, in the absence of any other abnormal testing?

If Fibromyalgia can be set off by a post viral incident and Gastroparesis can also be set off by a post viral incident why is there not more knowledge of this around amongst doctors as I would have thought that Gastroparesis allied with Fibromyalgia would have been more common?

Also in my case the Gastroparesis manifested one year plus, after the ??PN symptoms. If post viral Gastroparesis onset is usually only a few days or weeks at the most, after a viral incident is it possible that I have had several ‘viral’ episodes to cause both Fibromyalgia and Gastroparesis and why so lucky??? Or is it just another evolving symptom of a relentless condition that is never going to stop throwing up curve balls?

So confusing!!!!

I think that the 'jury is still out' on Fibromyalgia.
It seems that when doctors cannot seem to get a direct diagnosis,
they pass the ball to Fibromyalgia. Some docs (esp neuros) don't seem to think that there is such a condition as Fibromyalgia. They think that it's just a 'dumping ground' for a bunch of undiagnosed related conditions.
It is the newer term, rather than say it is 'idiopathic' they can finally have a condition as a cause.
But the 'jury is still out' for some.

I had a doctor who was a GP hoslitic doc but an MD suggest fibro to me and also a anestesolgist. For me it turned out no but I also thought a rheumatologist would be more the specilaty but I could be wrong. I know that the pain doc said there was that test I think trigger points for fibro. I am confused on your ? but do you think you have fibro on top of the current or that the current may be misdx? If in addition would the treatment be about finding the right meds for relief? I am sorry I may be so confused. Just hope you feel better and get some answers

There are 18 specified tender points for fibro. You need at least 11 of those to diagnose fibro. That's what I have found in researching it. http://www.fibromyalgia-symptoms.org...diagnosis.html

I have been told, that by and large the 18 tender points are falling into some disfavour and don't tend to be used for diagnosing Fibro now. Some may still do it. I will see what the Rheumatolgist cum Fibro specialist says about this next week when I have a consultation.

There are some more equivocal tests which currently tend to be only done for research purposes rather than diagnostic purposes and these are lumbar puncture for some compound in the CSF and also functional PET scans which are showing some promise....however they are all still a bit pie in the sky! At least research is happening!

Yes Daniella, my questions may seems somewhat more like statements rather than questions which I am throwing out to the universe, as I myself am relatively befuddled as to whether all my symptoms are in fact explained by Fibromyalgia or whether there is other pathology going on - the chicken and the egg so to speak!

I know that my very brilliant Endocrinologist says that 'Fibromyalgia' is a REAL condition and that my symptoms are very valid. She doesn't think the jury is still out on the condition actually existing, just on causes, clear diagnostics and treatment - LOL!!

Fibro and MS show low B12 levels in the CSF.

http://www.ncbi.nlm.nih.gov/pubmed/9310111

for MS:
http://www.biomedexperts.com/Abstrac...fter_high-dose

I still think that the drug co is pushing docs for Dx'ng 'fibro'.
The ad on TV for Lyrica is one example of putting it (shoving it) into patients' minds. It may be a true condition, but there are too many Dx's for it, & it is used as a dumping ground when the docs can't find another cause. Testing is mostly subjective and no one test will Dx it unconditionally. Diagnostically, overuse and mis-diagnoses when the docs are too lazy to go any farther in testing.

I saw a neuro @ the pain center of Sloan Kettering yesterday. The "Fellow" interviewed me before the Attending arrived. He seemed new & inexperienced yet afflicted with a major case of self importance. He clearly had not read my chart because when I said that I had been dx'd w/ Fibro, he immediately dismissed it as a "wastebasket" dx & added that he didn't even believe in its existence. When I pointed out that the Fibro had been dx'd by the Chief of Neurology, (his boss) on an earlier visit, he sped into backpedal mode. A 30 second glance at my chart would have saved him the embarrassment.

When the visit ended, the attending wrote "Fibro" as a dx on an rx for physical therapy. But I suspect that the Fellow, as is the case with many know-it-all mds, will continue to dismiss Fibro. He doesn't "believe" in it. Hmmm, I've always thought that medical science should be evidence based, not belief based.

I too have heard the 18 points were not always accurate dx. How are your D levels though Mrs D would know more I have heard people with this have low d often. Megan are you doing any treatments or on any meds? If you get relief from something it may help also in dx. Have you thought since you do have multiple issues of going to a major place like Hopkins or Mayo if that is possible? I know you can send your records to Mayo and they can review it to see if they feel they can help you. Feel better.
By the way I hate these med commercials. I don't know why. I just feel like it makes it less about ones well being and more about money.

Hi Daniella,

My Vit D levels have come up from 48nmol/L (below acceptable level) about one year ago, to 117nmol/L now, thanks to my Endocrinologist's persistence in encouraging me to take a supplement. I have no clue of course as to what is happening in the CSF with Vit D levels!!

I am now on Lyrica 150mg at night and 75 mg in the am since my appointment with a Rheumatologist a few days ago. He wants me to increase very slowly to 150mg am and 150mg pm, then we will see how it goes - pain-wise. I'm also on 8 hourly minimum analgesia (paracetamol -Australia) for pain.

I guess it's a bit of a wait and see game to see what emerges next in the way of symptoms, if any! I'm also on Motilium (Domperidone) for Gastroparesis which was diagnosed in January this year. I feel like a druggie sometimes. So along with Hydrocortisone for my adrenal problem and all the supplements I take, the pills are mounting up!

We don't have Lyrica or any TV drug ads here thankfully (apart from cough/hayfever mixtures and basic pain killers) so Lyrica has not been flogged as a cure all, but I agree it must seem to be such a mercenary approach rather than consideration for people's well-being.

I am in Australia, Daniella (if you look at my profile), so have no intention of going to Hopkins or Mayo - lol!