4 ms·

Fibromyalgia And idiopathic disease are not terms for "go away". They mean "I've tried what I can think of and theres no further testing we can recommend" Not

by casion 7y ago

Fibromyalgia And idiopathic disease are not terms for "go away". They mean "I've tried what I can think of and theres no further testing we can recommend" Notably, a positive punch biopsy for small fiber neuropathy IS diagnosis with treatment that works fairly well. Ideopathic simply means that the base cause is unknown. The author need to educate themselves further about what doctors can do and what words mean. He has a good scientific diagnosis, and he's outright dismissing it based on some misdirected anger.

jonathanyc 7y ago
At the beginning of the story I empathized with the author, myself having had to deal with pain in my hands that required injections to resolve. But their attempt to make their article more “funny” and dramatic at the expense of their doctors rubbed me the wrong way. It’s not cool to use other people like that to get more clicks. The tipping point for me was the author making their doctor ask them to leave their office. It’s just as bad as people being rude to retail workers who can’t accept a refund.
- rntz 7y ago
  I don't think the author is trying to exploit doctors to get clicks. I think they're expressing genuine anger and frustration with the healthcare systems they've encountered and the dismissal they've experienced from doctors in those systems.
  - jonathanyc 7y ago
    A doctor telling you they don’t know what the root cause of your problem is is not dismissal, unless all of the author’s doctors are acting in bad faith. I was sad to hear that because of my bone structure in my wrists I will have to be very careful when typing for the rest of my life in order to avoid the pain coming back. I didn’t swear at my doctor when he told me that.
    - rntz 7y ago
      From the post: > I went away to the UK. I brought my medical records from America, but my British neurologist did not read my records or perform examinations. [...] My GP read the note and informed me: He would not prescribe me painkillers. He would not send me for a second opinion from a neurologist, or treatment from any other specialist. "Bad faith" is a vague term. Is not reading medical records evidence of bad faith? I don't know. But I'd sure feel dismissed if a doctor who hadn't read my records concluded without examination that the root cause of my problem was psychological and my GP refused to allow me to seek a second opinion. I think you may be confusing the American diagnoses (which were of the "we don't know the underlying cause" variety - fibromyalgia, idiopathic neuropathy) with the UK diagnoses (which I'd paraphrase as "you don't have a non-psychological problem and we won't allow a second opinion").
    - Igelau 7y ago
      It wasn't just that, but the doctor was also closing down all of her options, eliminating pain management, and ignoring all her medical records and telling her she's delusional. I'd say it's bad faith to so boldly screw someone over like that when you know they physically can't punch your face in for it.
    - stickfigure 7y ago
      The author swore at the doctor who said "it's all in your head". Which, frankly, seems like a pretty reasonable response.
rntz 7y ago
> Notably, a positive punch biopsy for small fiber neuropathy IS diagnosis with treatment that works fairly well. Ideopathic simply means that the base cause is unknown. What is the treatment you claim? Wikipedia claims that "Treatment [for small fiber neuropathy] is based on the underlying cause, if any." Given that idiopathic means having an unknown cause, that seems to contradict your statement.
- GordonS 7y ago
  SFN sufferer here, can confirm that there is no treatment. There are some promising research chemicals, but we are a long, long way from seeing anything available.
  - casion 7y ago
    There must be some miscommunication here. Gabapentin and Pregabalin are both used successfully for SFN and are first line treatment options. For severe cases, things like mexiletine can be used if you're willing to tolerate the side effects. Sodium-channel blockers like lidocaine + epinephrine can be used for localized treatment during sever pain. It's a fuzzy distinction because SFN is almost always a sign of an underlying cause (even if unknown), and symptomatic treatment IS medical treatment. (fwiw: I have SFN as well, not that it matters)
    - GordonS 7y ago
      Apologies, I meant "treatment" to mean "treat the condition", as in "make it better". Gabapentin, Pregabalin etc can help with the pain, but not the underlying cause. I haven't come across mexiletine before, but after a quick glance if looks like it's unlikely to be prescribed in the UK (I'm in the UK :). I must have tried dozens of medications over the past 4 years or so, but it seems I have some dodgy genetics, as I can't tolerate most, or I have an atypical response (gabapentoids make me feel drunk, SNRIs nauseous, and tricyclics do absolutely nothing). I also tried topical gabapentin and capsaicin, but neither did anything. > It's a fuzzy distinction because SFN is almost always a sign of an underlying cause (even if unknown) For me it started when taking immunosuppressants for another condition - within a couple of weeks, the pain started and has been there every minute of every day for years since. I have 3 other immune-related conditions, one of which is rare, and I do believe all of these is related - but I'm resigned to the fact that I'll never find the underlying cause.
GordonS 7y ago
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.

by casion 7y ago

jonathanyc 7y ago

At the beginning of the story I empathized with the author, myself having had to deal with pain in my hands that required injections to resolve. But their attempt to make their article more “funny” and dramatic at the expense of their doctors rubbed me the wrong way. It’s not cool to use other people like that to get more clicks. The tipping point for me was the author making their doctor ask them to leave their office. It’s just as bad as people being rude to retail workers who can’t accept a refund.

rntz 7y ago
I don't think the author is trying to exploit doctors to get clicks. I think they're expressing genuine anger and frustration with the healthcare systems they've encountered and the dismissal they've experienced from doctors in those systems.
- jonathanyc 7y ago
  A doctor telling you they don’t know what the root cause of your problem is is not dismissal, unless all of the author’s doctors are acting in bad faith. I was sad to hear that because of my bone structure in my wrists I will have to be very careful when typing for the rest of my life in order to avoid the pain coming back. I didn’t swear at my doctor when he told me that.
  - rntz 7y ago
    From the post: > I went away to the UK. I brought my medical records from America, but my British neurologist did not read my records or perform examinations. [...] My GP read the note and informed me: He would not prescribe me painkillers. He would not send me for a second opinion from a neurologist, or treatment from any other specialist. "Bad faith" is a vague term. Is not reading medical records evidence of bad faith? I don't know. But I'd sure feel dismissed if a doctor who hadn't read my records concluded without examination that the root cause of my problem was psychological and my GP refused to allow me to seek a second opinion. I think you may be confusing the American diagnoses (which were of the "we don't know the underlying cause" variety - fibromyalgia, idiopathic neuropathy) with the UK diagnoses (which I'd paraphrase as "you don't have a non-psychological problem and we won't allow a second opinion").
  - Igelau 7y ago
    It wasn't just that, but the doctor was also closing down all of her options, eliminating pain management, and ignoring all her medical records and telling her she's delusional. I'd say it's bad faith to so boldly screw someone over like that when you know they physically can't punch your face in for it.
  - stickfigure 7y ago
    The author swore at the doctor who said "it's all in your head". Which, frankly, seems like a pretty reasonable response.

rntz 7y ago

> Notably, a positive punch biopsy for small fiber neuropathy IS diagnosis with treatment that works fairly well. Ideopathic simply means that the base cause is unknown. What is the treatment you claim? Wikipedia claims that "Treatment [for small fiber neuropathy] is based on the underlying cause, if any." Given that idiopathic means having an unknown cause, that seems to contradict your statement.

GordonS 7y ago
SFN sufferer here, can confirm that there is no treatment. There are some promising research chemicals, but we are a long, long way from seeing anything available.
- casion 7y ago
  There must be some miscommunication here. Gabapentin and Pregabalin are both used successfully for SFN and are first line treatment options. For severe cases, things like mexiletine can be used if you're willing to tolerate the side effects. Sodium-channel blockers like lidocaine + epinephrine can be used for localized treatment during sever pain. It's a fuzzy distinction because SFN is almost always a sign of an underlying cause (even if unknown), and symptomatic treatment IS medical treatment. (fwiw: I have SFN as well, not that it matters)
  - GordonS 7y ago
    Apologies, I meant "treatment" to mean "treat the condition", as in "make it better". Gabapentin, Pregabalin etc can help with the pain, but not the underlying cause. I haven't come across mexiletine before, but after a quick glance if looks like it's unlikely to be prescribed in the UK (I'm in the UK :). I must have tried dozens of medications over the past 4 years or so, but it seems I have some dodgy genetics, as I can't tolerate most, or I have an atypical response (gabapentoids make me feel drunk, SNRIs nauseous, and tricyclics do absolutely nothing). I also tried topical gabapentin and capsaicin, but neither did anything. > It's a fuzzy distinction because SFN is almost always a sign of an underlying cause (even if unknown) For me it started when taking immunosuppressants for another condition - within a couple of weeks, the pain started and has been there every minute of every day for years since. I have 3 other immune-related conditions, one of which is rare, and I do believe all of these is related - but I'm resigned to the fact that I'll never find the underlying cause.

GordonS 7y ago

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.