4 ms·

I'm sorry, but at least in the UK and on the NHS, fibromyalgia is very much a diagnosis of "go away". I had to battle with my neurologist to get a skin biopsy,

I'm sorry, but at least in the UK and on the NHS, fibromyalgia is very much a diagnosis of "go away". I had to battle with my neurologist to get a skin biopsy, despite very clear symptoms of neuropathy, and a very clear trigger. He eventually ordered it, very reluctantly. It came back normal, which for him for conclusive proof that I had fibromyalgia. When I asked him about fibromyalgia, it was immediately clear that he literally had no idea about it - when I said that it disproportionately affected women, he actually laughed at the idea. When I said I didn't have pain in the tender points associated with fibromyalgia, and I didn't have flare-ups that are typical of fibromyalgia, he just filibustered. It really was his way of saying "I dunno, you're probably a wacko, go away". I did a lot of reading of papers, and was convinced I did have small fiber neuropathy. I requested a copy of my medical notes and discovered 2 very interesting things - firstly, the neurologist was indeed convinced it was all in my head, that no physical cause would ever be found, and he'd influenced and biased other medical professionals I was involved with by telling them this at every opportunity. Secondly, the biopsy sample had been taken from the wrong place, and had later gone missing - there were no results! I insisted on another biopsy, and sure enough it found small fiber neuropathy in my arms and legs. He didn't even apologise for what I see as clear negligence. In the author's case, he had a biopsy diagnosis from the US, but said the UK docs didn't accept that, and he doesn't even have any pain meds - he absolutely should outright dismiss that in anger! My advice for the author: you're in a profession where you can afford to self-fund private healthcare - put aside principles and just pay to see a private neurologist. If needed, they can repeat a skin biopsy, and you will absolutely not be left without any pain meds. For neuropathic pain, the best pain meds for most people are Gabapentin, Pregbalin and tricyclics. If those don't work, SNRIs such as duloxetine, might. Opioid medications don't work well on neuropathic pain for the majority of people, but can help some, especially if nothing else works. Sativex (basically a cannabis tincture) also helps some people, and is very easy to get privately now if you have proven SFN (let me know if you want to try this and I'll tell you where to get it).

gwbas1c 7y ago
> and you will absolutely not be left without any pain meds Based on what I've learned, over-the-counter pain medication, such as Tylenol and Advil, is most effective for pain. It's also cheaper, doesn't require a prescription, and isn't addictive. You should consult with a doctor for high doses and long-term usage. When I had opioids after surgery, I could not concentrate. Specifically, I could not concentrate to read for pleasure, or do the kind of reading needed for our profession. Everything came back as soon the last dose wore off. Since then, even with minor dental surgery, a few high doses of Advil work much better than Valium. (The Valium just leaves me hung over the next day.
- tofof 7y ago
  It's unsurprising that Advil (Ibuprofen), an anti-inflammatory painkiller, would work better for pain than Valium (Diazepam), an anti-anxiety medication with no pain relieving properties of any kind, and certainly not an opiate. Perhaps you meant Vicodin? In either case you undercut your position to give advice about choice of painkiller.
  - jlgaddis 7y ago
    I was thinking the same thing when I first read the above comment, I just assumed that he meant Vicodin.
  - casion 7y ago
    Parent may have mistyped, but benzodiazepines are very frequently utilized for treating Firbomyalgia pain. (at least in the US)
    - GordonS 7y ago
      Not in the UK. Almost all doctors don't like to prescribe benzos at all nowadays, and if they do it will be literally a few as a one-off for something like anxiety.
- GordonS 7y ago
  > over-the-counter pain medication, such as Tylenol and Advil, is most effective for pain For inflammatory pain, yes, NSAIDs can be very effective. Neuropathic pain however, is a very different beast - NSAIDs will not help at all.
casion 7y ago
I had an identical experience to you, however Fibro is diagnosis of exclusion. When the doctor doesn't know what else to do, and you match the symptoms... Boom, Fibro. I think that hanlon's razor applies: "Never attribute to malice that which is adequately explained by stupidity." In my case, after seeing dozens of specialists, the doctors simply had no clue what to do. Thus what was left was fibro (which few understand) or psychosomatic causes. I much rather frame a response of "I don't know" as just that, they don't know. It allows me to proceed further with a more knowledgable source. Early in my experience I took it as "Go Away" or "You're faking", which made me combative. Combative against a source that lacked the knowledge to help me further. It was a COMPLETE waste of time. If I took "We don't know" as just that, I would have much more quickly moved towards finding a proper specialist with the knowledge to do proper testing and followup care. It's really easy to think that Doctors are being malicious because, hey! They're doctors, they're not dumb, right? Except they are. Even the most educated of generalists lacks significantly more medical knowledge than they possess. Doctors know a lot less than they know, and almost always best to recognize those limitations in an individual as soon as possible so you can find the right person for your care.
- GordonS 7y ago
  > however Fibro is diagnosis of exclusion In part, yes, but there are actually well-defined criteria for fibromyalgia[0] > I think that hanlon's razor applies: "Never attribute to malice that which is adequately explained by stupidity." sigh, I agree. In my (unfortunately vast) experience with NHS doctors, it seems the majority have never had any training or even read a paper since they became doctors, and that they are trained to diagnose the obvious and write everyone else as a nutjob. For example NHS endocrinologists mainly know about diabetes (even if somewhat outdated) and thyroid cancer - anything else, forget about it, you need to go private and see a specialist that doesn't have tunnel vision. [0] https://www.ncbi.nlm.nih.gov/pubmed/20461783 https://www.ncbi.nlm.nih.gov/pubmed/20461783

gwbas1c 7y ago

> and you will absolutely not be left without any pain meds Based on what I've learned, over-the-counter pain medication, such as Tylenol and Advil, is most effective for pain. It's also cheaper, doesn't require a prescription, and isn't addictive. You should consult with a doctor for high doses and long-term usage. When I had opioids after surgery, I could not concentrate. Specifically, I could not concentrate to read for pleasure, or do the kind of reading needed for our profession. Everything came back as soon the last dose wore off. Since then, even with minor dental surgery, a few high doses of Advil work much better than Valium. (The Valium just leaves me hung over the next day.

tofof 7y ago
It's unsurprising that Advil (Ibuprofen), an anti-inflammatory painkiller, would work better for pain than Valium (Diazepam), an anti-anxiety medication with no pain relieving properties of any kind, and certainly not an opiate. Perhaps you meant Vicodin? In either case you undercut your position to give advice about choice of painkiller.
- jlgaddis 7y ago
  I was thinking the same thing when I first read the above comment, I just assumed that he meant Vicodin.
- casion 7y ago
  Parent may have mistyped, but benzodiazepines are very frequently utilized for treating Firbomyalgia pain. (at least in the US)
  - GordonS 7y ago
    Not in the UK. Almost all doctors don't like to prescribe benzos at all nowadays, and if they do it will be literally a few as a one-off for something like anxiety.
GordonS 7y ago
> over-the-counter pain medication, such as Tylenol and Advil, is most effective for pain For inflammatory pain, yes, NSAIDs can be very effective. Neuropathic pain however, is a very different beast - NSAIDs will not help at all.

casion 7y ago

I had an identical experience to you, however Fibro is diagnosis of exclusion. When the doctor doesn't know what else to do, and you match the symptoms... Boom, Fibro. I think that hanlon's razor applies: "Never attribute to malice that which is adequately explained by stupidity." In my case, after seeing dozens of specialists, the doctors simply had no clue what to do. Thus what was left was fibro (which few understand) or psychosomatic causes. I much rather frame a response of "I don't know" as just that, they don't know. It allows me to proceed further with a more knowledgable source. Early in my experience I took it as "Go Away" or "You're faking", which made me combative. Combative against a source that lacked the knowledge to help me further. It was a COMPLETE waste of time. If I took "We don't know" as just that, I would have much more quickly moved towards finding a proper specialist with the knowledge to do proper testing and followup care. It's really easy to think that Doctors are being malicious because, hey! They're doctors, they're not dumb, right? Except they are. Even the most educated of generalists lacks significantly more medical knowledge than they possess. Doctors know a lot less than they know, and almost always best to recognize those limitations in an individual as soon as possible so you can find the right person for your care.

GordonS 7y ago
> however Fibro is diagnosis of exclusion In part, yes, but there are actually well-defined criteria for fibromyalgia[0] > I think that hanlon's razor applies: "Never attribute to malice that which is adequately explained by stupidity." sigh, I agree. In my (unfortunately vast) experience with NHS doctors, it seems the majority have never had any training or even read a paper since they became doctors, and that they are trained to diagnose the obvious and write everyone else as a nutjob. For example NHS endocrinologists mainly know about diabetes (even if somewhat outdated) and thyroid cancer - anything else, forget about it, you need to go private and see a specialist that doesn't have tunnel vision. [0] https://www.ncbi.nlm.nih.gov/pubmed/20461783 https://www.ncbi.nlm.nih.gov/pubmed/20461783