The questions keep coming!
 

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

More on Fibromyalgia!
 

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.

Lyrica etc.
 

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!

As I understand it Neuropathic pain is just that, i.e . pain which is caused by a nerve disorder. It is a symptom rather than a (specific) cause. In any particular case, the cause may be difficult to determine.

PN is when the disorder is of the "peripheral" nervous system, meaning generally nerves in the extremities - legs, arms etc - as opposed to the "central" nervous system - spinal cord etc

I realise that this probably does little to help in your case but it is useful to be clear about the terms.

For more information including a long list of the cause of Neuropathic pain, see http://www.patient.co.uk/showdoc/40025146/

I think you sound a lot like a fibro patient with the neuropathic pain and no neuropathy.


Good luck!!
I hope they figure it out!

I grew old thinking fibromyalgia was a psychological condition, however, I dont feel my "psychological" problems are from anything other than the pain, etc. My neuro talked to me long and hard and assured me this condition was real. Too bad it isnt as obvious as a broken leg...then maybe "people" would understand both PN and fibromyalgia.

Daniella -

If I may ask, what kind of adrenal problem do you have that you take hydrocortisone for?

Thanks, Leslie

Megan-

If I may ask, what kind of adrenal problem do you have that you take hydrocortisone for?

Thanks, Leslie

To Leslie and sbvcrn!
 

To Leslie,

I have 21-Hydroxylase enzyme deficiency otherwise known as Congenital Adrenal Hyperplasia. As well as Hydrocortisone, I take Florinef (Fludrocortisone) for CAH

Sbvcrn, I agree about longstanding pain more than likely being the cause of any anxiety or psychological manifestations in Fibromyalgia. I have a strong aversion (and even contempt) to just about every ill being attributed to anxiety and depression as many medicos are apt to do, and I vehemently disavow the connection, for me at least - lol!

I'm glad your Neuro admitted to you the reality of this Fibromyalgia condition. The two Neuros I have seen, mentioned not a word about its possibility to me.....grrrr! However my Endocrinologist (wonderful, brilliant woman) assured me that this is a very real condition. So validating!

Megan... are you still using the acetyl carnitine? Do you have an update for us about it?

I understand about the mental part and doctors. With RSD there is often a huge focus on that. I think for me though it was a very good thing I went back to a psych. I still have all my physical health conditions but the way I am coping with them and outlook as greatly improved. Really before I went and I had been dealing with this for 2 years then I truly was an anxious and crazy mess mentally. This did not help my pain. I do feel though when I asked a doc if a procedure went bad then what he said he would said me to therapy. That ****** me off. So I think it is more the approach a doctor takes and having a balance so to speak if I am making any sense.

TO MRSD & Daniella
 

I do have an update on the Acetyl-L-Carnitine!

Two weeks ago at my Endo's appointment, after expressing my enthusiasm to her about Acetyl-L-Carnitine, she said: "be open minded about it because your improvement in energy could equally be from the DHEA that you started in February".

So after getting this slightly less than positive response from her I didn't take the Acetyl for about ten days. Then I did a total nosedive energy/fatigue-wise, a couple of days ago and had to spend most of the day in bed. I then realised that it could have been because of not taking the Acetyl, so I started back on it that very day when I could drag myself out of bed. It may have been co-incidence but this is about the third time this has happened (my own unintentional RCT's - hehe!). Although I have been on DHEA previously, as well as this time, I have never noted such a marked change in my energy levels when I have omitted to take it for awhile.

The Carnitine is expensive stuff but the quality is good, so I'll just keep forging on taking it along with the rest of my medication/supplement arsenal!

Daniella - I have had a couple of my doctors recently (Endo & Rheumy) ask whether I would consider seeing a counsellor/psychologist/psychiatrist, as it can be beneficial in any longterm chronic illness, quite apart from all my recent medical diagnoses. I said to my Endo, "I'm not nuts you know and I certainly don't need drugs that a psychiatrist may prescribe" and she said "no what would be good is just talky-talkies" which I thought was cool. So I may just do it sometime soon! The next problem is finding the right fit of person.

Megan... have you been tested for mito disorders?

Such a fast response to carnitine, suggests that maybe you should get tested if you have not already.

I know this is expensive, but they also use CoQ-10 for mito.

It is great you are seeing results from the carnitine!

Supplements!
 

I actually do have CoQ-10 which I take somewhat spasmodically, and you are correct - it is expensive.

The truth is with Gastroparesis and Oesophaegal paralysis, I am finding large capsules hard to swallow and sometimes cause stomach discomfort, so I tend to get slack on the important things like that. Small tablets and pills are usually ok. Acetyl-L-Carnitine is in powder form which I mix in with V8 juice as it is like a salt and vinegar flavour and totally compatible with V8!

Mito to MRSD
 

Sorry MRSD - also meant to ask, what test/s exactly for mitochondrial disorders?

The main test is a muscle biopsy I believe.

And mito can also cause gastroparesis.

http://my.clevelandclinic.org/disord...l_Disease.aspx

It used to be thought that one had to present with this as a child. But recent thinking is showing that it can appear in adults, either as a recessive gene that becomes more active,
or as acquired from damage from the environment (drugs, toxins and infections).

I made this post in response the the new article that appeared in Science News recently....
http://neurotalk.psychcentral.com/sh...t=mitochondria

When extreme, this disorder can have dramatic symptoms. But when milder, it can be overlooked.

Because the autism community is working on this aspect of it as a potential cause of autism, attention in the press is becoming more obvious.

If you read the article from the Cleveland Clinic, you can see the nutrients used to treat this.

Your swift response to acetyl carnitine suggests that your mitochondria may be not functioning well for some reason.