Did you look at the website neurosymptoms.org ? What do you make of it ?
What makes CFS different from somatoform disorder
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nanonug
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Does he have any evidence for this assertion?
He references the neurosymptoms.org website
nanonug
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Yes I had nerve conduction and EMG single probe studies to eliminate myasthenia gravis and ms. I’m confused 
Myasthenia gravis is generally diagnosed with a blood test that looks for antibodies against nicotinic acetylcholine receptors.
MS is more difficult to diagnose but usually involves an MRI and/or looking for chronic inflammation in the cerebro-spinal fluid.
I'd be very skeptical about strictly relying on electromyography for anything.
nanonug
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That's not evidence for his belief.
nanonug
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I'm looking at the following video that is embedded on the neurosymptoms.org website and the thought that comes to mind is Transient Ischemic Attack. A mini-stroke that damages certain neurons may potentially lead to neurological impairment which, upon retraining (establishing new neural pathways) leads to full recovery.
alex3619
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I would like to add a caveat to this. CFS or ME that is sub-clinical, that is mild enough you cannot actually be diagnosed, might allow a fair bit of exercise. In patients with mild CFS or ME under weak definitions the same thing might apply. In patients with subclinical ME and complications that increase severity, such as EDS or OI, then there might be patients who can exercise.
This does not apply at all to moderate to very severe patients. Its only in the mild and subclinical range that this might apply.
It is also possible at a very mild range of severity that its very hard to figure out what the PEM response is, it might be greatly decreased. So it might be put down to a typical exercise response. We just do not know.
alex3619
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I realise this question is rhetorical, but for others I want to point out the traditional divide is structural versus functional. So non-functional is structural, unless you are a BPS psych perhaps.
Again a rhetorical question. The answer is yes.
You should be confused. These help eliminate disorders, or are used to support a specific diagnosis such as MG. If nothing is found then they tell you nothing about what is wrong.
When you are told this you are getting a non-answer.
One thing that convinced me that my symptoms weren't psychological was keeping a food/activity/symptom diary. I could go back and verify that something repeatedly triggered symptoms, even though I had no belief that they should have any effect. Likewise, things that I believed might affect symptoms didn't, or had opposite effects to what I believed they should be.
Doctors eager for a 'somatization disorder' diagnosis would blame it on a change in lifestyle (lost job, relationship, etc). I would then point out that there weren't any changes in my lifestyle; I just one day started having these symptoms. That didn't change their minds much though...
nanonug
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On page 10 you'll find a diagnostic algorithm for SEID. See if you fit the bill. If you do, considering printing (professionally!) and taking to your neurologist. Give him time to digest. Then, eventually, ask him why you don't fit the bill.
http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf
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Bear in mind that 'functional neurological disorder' is coded under the 'conversion disorder' diagnosis (i.e., psychosomatic/hysterical). It's a recently made-up diagnostic category.
If we're supposed to reflect that psychosocial issues affect lots of/most illnesses, then why isn't MS treated primarily with CBT? Or cancer? Or Parkinson's?
This doctor clearly has his own biases. You don't have to accept his opinion. You could ask to be referred to an ME specialist, who will at least give you an actual diagnosis, even if they then want to treat you with CBT and GET (which you can refuse).
Vague references to 'signals' and the like are untestable, and therefore unscientific. This is the bread and butter of FND.
A few clues that suggest ME (none is diagnostic on its own, except perhaps the first):
1. Symptoms that get worse after exertion. Especially if this feels quite flu-like, and kicks in after a delay of a few hours to up to three days. Keep an activity diary and use a step counting app or Fitbit. If you feel worse 1-3 days after activity, that indicates PEM.
2. ESR < 5mm/hr. Anecdotally, this may support a diagnosis of ME. Some patients have raised levels, though, so it's not diagnostic.
3. Alcohol intolerance - very common in ME, apparently. There isn't any research on this, but it's likely related to mitochondrial dysfunction and/or neurocognitive problems.
4. A positive Romberg test. Indicates neurological problems.
5. Sticky or very thick blood (in scientific terms, it's lost its deformability). Doctors often notice this in patients, though if you've ever done a finger-prick blood test, you may have noticed it yourself! Possibly diagnostic, but more info needed.
6. Possibly increased prolactin levels after the buspirone challenge, or at least a nauseous feeling. ME patients usually don't do well on normal doses of SSRIs and similar drugs. This may not work if you have co-morbid depression.
The two-day CPET isn't really done here, and you're unlikely to get scans done (although hypoperfusion, especially of the brainstem, may be a clue). You could probably find some neuropsychiatric testing online to measure brain fog rather loosely (you'd expect slowed processing), although it's not flawless.
stefanosstef
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Very interesting coversation.I visited a friend who is a psychiatrist and told me that one type of depression doesnt have the typical depression symptoms but manifests as solely as somatization.She has doubts that I have cfs, although my latest tries to work out and the typical pem after leave me very little doubts now.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181769/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1636127
It looks like though, that it is widely accepted that somatization disorder exists, although very rare.I wonder how can I counter argument what she said because the diagnosis you may have depression without the symptom of depression annoys me.
Also the fact that I'm quite the opposite of a hypohondriac, I do not worry at all most times, and I am very resistant in feeling desperate.I adapt very quickly, accept whatever new or worsening happens and keep fighting.Chronic unexplained sore throat(no inflammation signs), right eardrum pain (no inflammation signs), tmj (perhaps due to wellbutrin), didnt bother me, I got used to the unpredictable nature of this disease.
What I want to say is I believe I am not at all a candidate for somatization and if this somatization disorder isnt even proven that it exists then this is dishonesty from her part and I dont like it at all.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181769/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1636127
It looks like though, that it is widely accepted that somatization disorder exists, although very rare.I wonder how can I counter argument what she said because the diagnosis you may have depression without the symptom of depression annoys me.
Also the fact that I'm quite the opposite of a hypohondriac, I do not worry at all most times, and I am very resistant in feeling desperate.I adapt very quickly, accept whatever new or worsening happens and keep fighting.Chronic unexplained sore throat(no inflammation signs), right eardrum pain (no inflammation signs), tmj (perhaps due to wellbutrin), didnt bother me, I got used to the unpredictable nature of this disease.
What I want to say is I believe I am not at all a candidate for somatization and if this somatization disorder isnt even proven that it exists then this is dishonesty from her part and I dont like it at all.
southwestforests
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There is an alternative that is not dishonesty but is equally as unlikable, and perhaps even more unlikable, a pathological inability among health care providers to accept and process that there are unknowns which are not and never will be able to be pinned down in one afternoon and do not and will not fit in to tidy little billable boxes.
But they can't prescribe antidepressants unless you have depression, so you must have depression even though you don't have the symptoms of it.
"Here's your prescription. Two more prescriptions and I win a new set of golf clubs."
stefanosstef
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According to the studies I posted, and others I presume, this thing exists.But I know it isnt me, I am the exact opposite.I rarely worry and I dont pay nuch attention to the symptoms and patterns to the point that I miss things that are obviously related.I never realized I experience PEM because it happens after the first 24h for me.
I don't fit the characteristics of somatization disorder either. The thick printout about it that one doctor gave me to convince me that's what I had, did the opposite, since I wasn't stressed, didn't 'decide I had the disease after reading about it' or whatever else. My responses to various things (treatments, activities) generally surprised me, rather than being the expected responses.
It took me a long time to realize the consistency of 'feeling worse the day after doing something strenuous'. I had to check my journal to verify that yes, it was fairly consistent, and it was also a fairly consistent 24 hr delay. I didn't even learn about PEM (or about ME) until many years later.
I also had an odd response (pre-ME) that took a long time for me to realize that it was a real thing. A day or two after drinking orange juice (not a favorite of mine), I'd feel like I was starting to come down with a cold. Maybe three sneezes, and a hint of congestion, but gone the next day. It was years before I realized that it was a consistent effect, and it was the opposite of what was expected (Vit C should prevent colds). It was such a minor response that I just ignored it, but now I wonder if that was the first signs of predisposition to ME, and something in OJ pushed whatever it is in my cells into a temporary ME state.
It took me a long time to realize the consistency of 'feeling worse the day after doing something strenuous'. I had to check my journal to verify that yes, it was fairly consistent, and it was also a fairly consistent 24 hr delay. I didn't even learn about PEM (or about ME) until many years later.
I also had an odd response (pre-ME) that took a long time for me to realize that it was a real thing. A day or two after drinking orange juice (not a favorite of mine), I'd feel like I was starting to come down with a cold. Maybe three sneezes, and a hint of congestion, but gone the next day. It was years before I realized that it was a consistent effect, and it was the opposite of what was expected (Vit C should prevent colds). It was such a minor response that I just ignored it, but now I wonder if that was the first signs of predisposition to ME, and something in OJ pushed whatever it is in my cells into a temporary ME state.
gbells
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In Somatoform disorder you need to have a negative stressor and then the ME follows it. That isn't reliable with ME.
stefanosstef
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@Wishful
It's EXACTLY as you say!I still cannot believe I have PEM after excercising, I am still partly in denial because it looks so strange to me, so so strange this reaction.I will repeat it again to see if it happens the same, I don't do it often because it scares me and trust me, it's very hard for me to get scared, I push and fight in every aspect of my life, but the 3-4 (minimum) day suffering is quite bad and I need a break.
@gbells
What do you mean exactly?What is the connection of Somatoform to ME?From what I understand Somatoform disorder needs a stressor but for ME it isn't necessary?
I think in most cases in ME there has been a stressor, it doesn't need to be constant.The nanoneedle and other experiments also show that we have a dysfunctional way of handling and recovering from stress.
In February I spend a couple of months in big stress because my gf had a severe reaction to ciprofloxacin with only 5 pills and nobody knew what happened and the disbelief from most of the doctors was frustrating to say the least.In the meantime my gf wasn't able to walk at all she was dragging herself to the bathroom to pee in the middle of the night and in the day she was moving on a rolling chair.I was studying the subject many many hours per day, cutting time from every thing I could, even sleep to try to understand what happened and how I can help her.
The stress passed completely but since that I am not the same at all.My ME quite progressed and the ground it won it appears to be permanent despite me having zero stress.
It's EXACTLY as you say!I still cannot believe I have PEM after excercising, I am still partly in denial because it looks so strange to me, so so strange this reaction.I will repeat it again to see if it happens the same, I don't do it often because it scares me and trust me, it's very hard for me to get scared, I push and fight in every aspect of my life, but the 3-4 (minimum) day suffering is quite bad and I need a break.
@gbells
What do you mean exactly?What is the connection of Somatoform to ME?From what I understand Somatoform disorder needs a stressor but for ME it isn't necessary?
I think in most cases in ME there has been a stressor, it doesn't need to be constant.The nanoneedle and other experiments also show that we have a dysfunctional way of handling and recovering from stress.
In February I spend a couple of months in big stress because my gf had a severe reaction to ciprofloxacin with only 5 pills and nobody knew what happened and the disbelief from most of the doctors was frustrating to say the least.In the meantime my gf wasn't able to walk at all she was dragging herself to the bathroom to pee in the middle of the night and in the day she was moving on a rolling chair.I was studying the subject many many hours per day, cutting time from every thing I could, even sleep to try to understand what happened and how I can help her.
The stress passed completely but since that I am not the same at all.My ME quite progressed and the ground it won it appears to be permanent despite me having zero stress.