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Dr. Bob is Robert Hsiung, MD,
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Posted by ben on May 6, 2002, at 2:54:13
In reply to Re: Widespread pain coming from depression ?!, posted by katekite on May 5, 2002, at 18:57:04
> Were you on any antidepressants or other drugs in the 6 months prior to developing the pain? Did you have any kind of infection or flu symptoms etc when it first arrived? Was it sudden or gradual? Just curious as it sounds a little like myself, though my thing is a hot/cold sensation issue, not pain.
PAXIL was the AD before development of the pain, Paxil was good but I had too many side effects ! So I went off it (very very slowly !) and more or less sudden I got pain with an awfull flu. Thought it could be the flu or coming of Paxil but 5 months later it is still there ! I dont want to here any more of Paxil withdrawal - thats not so long (only some people with anectotal stories speak about that). Checked a lot of bacterias and viruses, rheumatologic diseases without any outcome ! Tried Elavil up to 25 mg/d but left mee to tired ! Opipramol (a TCA) up to 200 mg/d Ibuprofen up to 1800 mg/d, Diclofenac and other NSAIDs without any good response.
Tried also Manerix (Moclobemid) up to 450 mg/d too much nervousness and anxiety but no pain relief !
What about Venlafaxine or antiepileptics (Gabapentin, Carbamazepine...) ?> I currently have some weird temperature sensation issue that I'm not sure of the cause of. In an episode of it, I feel a burning sensation in my legs, or if bad feel that I am flushed and have a fever, but if I take my temperature its normal, and I look normal. No one thinks its depression, since I'm not depressed. But my regular doc did look at me weird and took three visits to do even basic things he should have done right away. Is most likely interaction between two meds I was on, plus a viral infection at the beginning that somehow sensitized me to it, but it is still triggered by things and sensation is not what it was originally.... may be something akin to serotonin syndrome. Or lack of norepinephrine in the right places... not sure yet. Having been on many ssris and other things over the years I have to wonder if it's partly a result, maybe I'm sensitive. Heat and pain are not too different when it comes to how the brain sees it.
>
> Can only recommend to write down on a scale of 1 to 10 how bad it is, every day, and where it hurts most, what drugs and the doses you take and what specific effects they seem to have.... it may be a long haul to find out what helps and doesn't. For me, writing it down was key to seeing that serotonin precursors and serotonin enhancing drugs all worsen it, while other drugs do nothing or help... clues. Also would recommend if particular antidepressants do not help it quickly, within a week or so at a dose that would affect depression, to move right on and try something of a completely different class of drug. Unless the depression is bad enough that it needs to be treated as a priority.
>
> So yes, it can be in your head, but doesn't remotely mean that just because its your brain that a drug for depression will also help the pain.... may accidently be the same drug, may be something else altogether.
>
> What have you tried so far?
>
> kate
Posted by katekite on May 6, 2002, at 10:04:23
In reply to Re: Widespread pain coming from depression ?! » katekite, posted by ben on May 6, 2002, at 2:54:13
Fascinating.... the flu part.
I was also on paxil but it was years ago, I did have terrible withdrawal but it lasted about 3 months and did not have temperature or pain issues, except headache.
Here's what happened to me: I was on klonopin and neurontin for 5 weeks no side effects, then ate salmon for dinner and remember it feeling weird, like it was the best food ever (sort of like the munchies on pot) then got a flu-like syndrome and hot several hours later (woke me up in the middle of the night) (felt like the flu was coming but it never showed after about 4 days) and at the same time had hot flushing and chills intermittently as if I had a serious fever. Ran only a minor fever of 99 the whole time. Had a panic attack which had never happened before, or since. After that it came and went until I quit neurontin and klonopin cold turkey 5 weeks later. It went away in 24 hrs. I had to restart klonopin after that due to withdrawal, but the symptoms didn't come back. Since then I've gotten it for about 24-48 hrs after eating salmon (3 times now, I'm learning) and after trying buspar and retrying neurontin (dumb of me). The drugs that aggravate it all seem to be serotonin enhancing, and dopamine agonists seem to make it better, but not really enough drugs to be sure so that's a guess.
I would guess based on what you say about flu symptoms, that's its some sort of post-infection syndrome, like mine. It seems to me that certain psychoactive drugs must potentiate or sensitize people to this risk.
From what you've said it doesn't sound like your current depression is causing it, unless the same brain problem that causes the depression is also causing pain.
Have you seen a neurologist?
Do you notice any other even subtle symptoms, things you think might just be depression but maybe aren't?kate
Posted by ben on May 6, 2002, at 13:21:35
In reply to Re: Widespread pain coming from depression ?!, posted by katekite on May 6, 2002, at 10:04:23
> Fascinating.... the flu part.
I had an an awfull cough when that pain came up in december 01 but also coming of Paxil so I thought it would be one of these but now I am confused ! After that flu I had allways cold hands and feets, now its better.
Two weeks befor that flu I had to treat an infection with Metronidazol for ten days (in long term use it is causing probably nerve damages, but the docs wouldnt hear on that - my treatment was too short ?! to develop such things) All begann at the left hand in the fingers 4 (ringfinger) and 5 - they seemed slept (tingling feelings), then pain distributed over the body (tibialis anterior and fibula in the limbs, ulnaris nerve and ellbow in the arms )> I was also on paxil but it was years ago, I did have terrible withdrawal but it lasted about 3 months and did not have temperature or pain issues, except headache.
I had temperature problems but if it was coming from the flu or the Paxil ( I guess the flu because I came off Paxil very very slowly with liquid Paxil).
>
> Here's what happened to me: I was on klonopin and neurontin for 5 weeks no side effects, then ate salmon for dinner and remember it feeling weird, like it was the best food ever (sort of like the munchies on pot) then got a flu-like syndrome and hot several hours later (woke me up in the middle of the night) (felt like the flu was coming but it never showed after about 4 days) and at the same time had hot flushing and chills intermittently as if I had a serious fever. Ran only a minor fever of 99 the whole time. Had a panic attack which had never happened before, or since. After that it came and went until I quit neurontin and klonopin cold turkey 5 weeks later. It went away in 24 hrs. I had to restart klonopin after that due to withdrawal, but the symptoms didn't come back. Since then I've gotten it for about 24-48 hrs after eating salmon (3 times now, I'm learning) and after trying buspar and retrying neurontin (dumb of me). The drugs that aggravate it all seem to be serotonin enhancing, and dopamine agonists seem to make it better, but not really enough drugs to be sure so that's a guess.How much Neurontin did you take ? For what exactly (depression: bipolar or mono, Pain...) ?
My doc didnt try Neurontin because I am very sensitive and he thinks that would knock me out (dizziness, fatigue, sedation....) !
I read SSRIs are not very effective in pain except PAXIL - damn I cant stand this drug cause of side effects ! TCAs should be better ?! But I dont like them. When it turns about Fibromyalgia (in my case I guess not) serotonine enhancing seem to work better than other transmitters ?!> I would guess based on what you say about flu symptoms, that's its some sort of post-infection syndrome, like mine. It seems to me that certain psychoactive drugs must potentiate or sensitize people to this risk.
What do you mean with potentiate or sensitize people to this risk and why ?
> From what you've said it doesn't sound like your current depression is causing it, unless the same brain problem that causes the depression is also causing pain.
I hope its a treatable existing thing not something hidden in the brain !
> Have you seen a neurologist?
Yes she made an EMG and NCS from my extremities: arms seem to be okay and legs seem to have a kind of peripheral neuropathy (no sensory/sensible nerve response in NCS/EMG dont know what this means and she also not !!! perhaps an artefact or something without relevance ???)
> Do you notice any other even subtle symptoms, things you think might just be depression but maybe aren't?
I am depressed with suicidal ideations but I think its coming from this disrupting pain making much disabilities ! What was first: The Egg or the Chicken ?! My pdoc sees it as from depression cause other docs didnt find any existing physical problem. I think the rheuma tests (ANA, ANCA ...) are very tricky as well as the the hole neurolgy and think of infection diseases coming from viruses ! And what about sarcoidisis ? My mother had that when she was young. My lungs has been tested with x-ray (in 90% positive) without any sign as well as the ACE (AC enzyme in 30% positive).
What about the other percentages which are negative by blood tests but do have it indeed ?! It is possible do have such a disease only in the peripheral system (as well as Wegener`s disease or vasculitis, collagenosis etc.). I dont know looking on a hospital stay too rule all things out/ to find the reason ? Someone called a doc diagnosing a physical ill patient with idiopathic cause to be an idiot of a doc. I wouldnt share this opinion because mostly it is unfair but sometimes a second opinion could be worth of gold.ben
Posted by IsoM on May 6, 2002, at 14:01:58
In reply to Widespread pain coming from depression ?!, posted by ben on May 4, 2002, at 13:17:07
Ben, I'm going to hit on an entirely different area. When I first read your post I didn't have the energy to respond so hope you'll consider this idea.
You said in another thread that you're a pharmacist, am I correct? That probably means you work long hours with few breaks, standing on your feet all day on concrete floors (with just lino over it).
I have mild fibromyalgia but have older shoulder, neck, & upper back injuries though not at all serious. But as I've grown older, they bother me more. When I started a different job where I'm now on my feet all day on a concrete floor, the pain has increased incredibly! I've bought the best work shoes I could (at over $100) & added gel foot inserts, but still, all day on that floor gets to me.
While the pain I had before would come & go but was bearable, now I feel pain in so many new places too. My feet ache, particularly in one joint area on one foot. My legs get a deep ache that feels like it's in my bones. My hands regularly go numb & tingly. The hand joints ache so that even light pressure on these spots is sharp. I have to wake & switch positions often due to my whole arm, hand, & shoulder going numb.
I wouldn't have necessarily made the connection to the concrete floor but that's when the worst of the pain started - within the first week. When I had a spell where I was off work & only worked one day a week, the pain almost disappeared except for a day or two following the work day.
Do your shoes wear somewhat unevenly on the soles? Mine do. I tend to have one hip tipped slightly higher & guess I compensate by standing slightly differently (or maybe my hip's up because I stand & walk slightly off). It's not anything noticable at all - just enough to cause problems from being on my feet all day on concrete. Chiropractors, unfortunately, never made any difference in how I felt.
Not that any of the other ideas may not be valid too, but your widespread pain may be a combination of different things & just wanted to point out another possible connection.
Posted by ben on May 6, 2002, at 14:34:32
In reply to Re: Widespread pain... » ben, posted by IsoM on May 6, 2002, at 14:01:58
> Ben, I'm going to hit on an entirely different area. When I first read your post I didn't have the energy to respond so hope you'll consider this idea.
>
> You said in another thread that you're a pharmacist, am I correct? That probably means you work long hours with few breaks, standing on your feet all day on concrete floors (with just lino over it).Thats right !
> I have mild fibromyalgia but have older shoulder, neck, & upper back injuries though not at all serious. But as I've grown older, they bother me more. When I started a different job where I'm now on my feet all day on a concrete floor, the pain has increased incredibly! I've bought the best work shoes I could (at over $100) & added gel foot inserts, but still, all day on that floor gets to me.
I tried this also, bought very good shoes but nothing happend. Went to an orthopaedist and nothing got better with the inlets for my shoes (I am no longer using them).
> While the pain I had before would come & go but was bearable, now I feel pain in so many new places too. My feet ache, particularly in one joint area on one foot. My legs get a deep ache that feels like it's in my bones. My hands regularly go numb & tingly. The hand joints ache so that even light pressure on these spots is sharp. I have to wake & switch positions often due to my whole arm, hand, & shoulder going numb.
>
> I wouldn't have necessarily made the connection to the concrete floor but that's when the worst of the pain started - within the first week. When I had a spell where I was off work & only worked one day a week, the pain almost disappeared except for a day or two following the work day.I had vacancies twice for one week without any change so this isnt the answer.
> Do your shoes wear somewhat unevenly on the soles? Mine do. I tend to have one hip tipped slightly higher & guess I compensate by standing slightly differently (or maybe my hip's up because I stand & walk slightly off). It's not anything noticable at all - just enough to cause problems from being on my feet all day on concrete. Chiropractors, unfortunately, never made any difference in how I felt.
Chiros helped me only for neck pain ! The hip thing is interesting but docs should see that.
I had often tired limbs (legs) in the past but not such strange pain !> Not that any of the other ideas may not be valid too, but your widespread pain may be a combination of different things & just wanted to point out another possible connection.
Thanks alot for your input either !
Posted by IsoM on May 6, 2002, at 14:53:28
In reply to Re: Widespread pain... » IsoM, posted by ben on May 6, 2002, at 14:34:32
I wrote:
I wouldn't have necessarily made the connection to the concrete floor but that's when the worst of the pain started - within the first week. When I had a spell where I was off work & only worked one day a week, the pain almost disappeared except for a day or two following the work day.You answered:
I had vacancies twice for one week without any change so this isnt the answer.My comment:
It took a long time for the pain to go away when I stopped being on the concrete floor. Kind of like, time to heal or something. I was working only one day a week for something like four months. I completely forgot about the concrete causing my pain till I went back to work last month. It might take a lot longer before you notice relief when you're off the concrete.Seeing that most of your work is behind a counter in a limited area, how about modifying the floor space? Could you get some good underpadding to lay down where you walk & stand? Something that has give but support at the same time? Seeing that I have to walk all over the place, it's not possible for me.
I've read that the best foot exercise ever is to walk barefoot in warm, dry sand. It soothes the feet (like a massage) but exercises them too. I'm serious when I say I'd like to set up a business place where people could come, wash their feet, dip them in something antimicrobial & go walking about a circuit of warm, dry sand with a little oasis area in the centre. I bet it would go over well.
Posted by katekite on May 6, 2002, at 16:32:00
In reply to Re: Widespread pain coming from depression ?! » katekite, posted by ben on May 6, 2002, at 13:21:35
Hi Ben,
I'm a veterinarian...I think we health professionals know just enough to drive ourselves completely nuts thinking that we can, by force of will and education, figure out what we need. I have gone through times when I just decided to let it go and let my psychiatrist deal with things, and then later it becomes 'painfully' apparent that was the wrong thing to do. I am but one of hundreds of patients to them, and they are driven by insurance etc to spend around 10 minutes actually seeing me. Plus I present in a depressed anxious mood and that's as far as they can see. It hasn't been til now, til I finally decided to go while not depressed, that my primary problems are being worked on. It is amazing to me the degree to which medical problems are overlooked when pyschiatric ones are present.
These weird syndrome issues are sort of analagous to the time I had viral meningitis and went a total of 11 times over a few weeks to a total of 4 different doctors at my college health center, to be given a different prescription every single time, for migraines, allergies, etc, until one day I finally fainted and got taken to an actual hospital where they did a million tests and figured it out. After that, I got a post spinal tap headache, went back to the health center and a fifth doctor told me I had a migraine despite me asserting the post csf tap idea -- eventually passed out with less than good cerebral pressure, back to the hospital, rational diagnosis, etc. (never let med students do your spinal tap).
Think of your fellow class of pharmacy students and think of the few you would feel comfortable asking for advice on something serious. That is the same percentage of specialists/doctors/etc who will be truly helpful. Just like our classmates, its hard to tell who actually will take your problems home with them to ponder, and you can't believe them saying "I'll have to think about this".
So then, in this territory of difficult syndromes we are in, the 'foreign country rule' applies. This rule is as follows: if you are lost in a foreign country, ask direction of three separate people and average the replies.
To answer your questions, I had a diagnosis of BP II, although I had never had a hypomanic or manic episode. Before that it was general anxiety and before that major depression. I am currently diagnosed as having attention deficit disorder without hyperactivity. Ritalin makes me calm and even, no more moodiness, so that's truly the first diagnosis that feels right since the major depressive episode. And finally my husband agrees psychiatric medicine is a good thing.
The klonopin was prescribed for anxiety, the neurontin as a mood stabilizer (though it actually was disinhibiting and made my moods look worse) and neurontin's beneficial effect for me was a great decrease in anxiety. It was after I raised the dose of neurontin from 200 mg TID to 300 mg TID that I started having problems.
In general I feel that neurontin is a great drug -- I am also extremely sensitive to drugs (needed only 5 mg/day of Paxil to see a mood effect). Many people get used to the sleepiness... I actually never felt sleepy until 900, at lower doses I actually found it activating, probably through the reduction of anxiety somehow. So don't let my side effects dissuade you from a trial.
The reason I say that maybe neurontin/klonopin interaction sensitized me to this is only that I found I got many infections while on it. Lots of cold sores. Seemed like my overall immunity suffered. Weird because I felt good and usually if I feel good its because I am, LOL. So I mean only sensitized, for me, in terms of a lowered resistance to any infection. (Although I will always wonder if it pruned some neurons somewhere in my hypothalamus.)
More questions for you:
So the neurologist observed a peripheral sensory neuropathy? Can you expand on what they suggested you do next? Are you saying they found conduction abnormal but can not say why? or that they were not sure? or? I feel I'm missing a puzzle piece here.
I'm sure the length of treatment with metronidazole to develop neuropathy is a statistical length of treatment.... why shouldn't you be at the short end of that? Is the exact damage that metronidazole is known to cause something you may have? or is it more like something similar? is this a reach or a possibility?
As far as paxil: I'm not sure I undestand, are you really saying paxil is the one drug that helps the pain? So you have tried it since, then? With what exact effect? how long does it help for? How high of a dose of paxil can you tolerate and what are the side effects?
Because if paxil is the one drug that helps, it seems almost bizarre that it was the one drug you happened to have in your system (a small concentration to be sure) at the time you got the flu-symptoms and pain. I'm not saying it sounds like withdrawal. Puzzle piece though.
"Something hidden in the brain." Would that be bad? Only if it stayed hidden. The two possibilities you are looking at are something in the peripheral nervous system or something central, unless its neuromuscular junction which doesn't seem logical. I can't think either is better than the other.
Yes second opinion yes. Idiopathic just means not enough people have had it for it to be understood and identified and written up. A smart doctor could most likely find something that helped it feel better, controlled it, at least, if it can't be cured.
Depression: with suicidal ideation that's got to be the first priority. Of course it may feel less painful if the depression lifts, because when we are depressed we naturally focus on negative things. What drugs have you tried for the depression since the pain started? I will look back at your other post as well, I'm curious.
As to the percentages of people who don't test positive but are, very true. I have to guess you had a virus that altered some brain or peripheral nervous system function to the point it hurts. There's probably no reason not to try a few antiviral therapies: amantadine, acyclovir etc. As well as novel anti-pain therapy: neurontin, etc. I would guess you would better spend money on trying meds than finding the virus that did it. Unless the pain is getting worse it may well be gone from anyone's view.
I know this is a really long email and I'm also hoping I haven't taken away any hope for a cure, I didn't mean to.
Remember to take my ideas with a grain of salt, given I'm biased by my own nasty experiences with doctors who couldn't diagnose a hangnail let alone a real problem, plus bad experiences with some meds (including paxil).
Am really curious about whether paxil really helps your pain as I'm inferring.
kate
Posted by ben on May 7, 2002, at 4:15:51
In reply to post viral syndromes, posted by katekite on May 6, 2002, at 16:32:00
> Hi Ben,
>
> I'm a veterinarian...I think we health professionals know just enough to drive ourselves completely nuts thinking that we can, by force of will and education, figure out what we need. I have gone through times when I just decided to let it go and let my psychiatrist deal with things, and then later it becomes 'painfully' apparent that was the wrong thing to do. I am but one of hundreds of patients to them, and they are driven by insurance etc to spend around 10 minutes actually seeing me. Plus I present in a depressed anxious mood and that's as far as they can see. It hasn't been til now, til I finally decided to go while not depressed, that my primary problems are being worked on. It is amazing to me the degree to which medical problems are overlooked when pyschiatric ones are present.
>
> These weird syndrome issues are sort of analagous to the time I had viral meningitis and went a total of 11 times over a few weeks to a total of 4 different doctors at my college health center, to be given a different prescription every single time, for migraines, allergies, etc, until one day I finally fainted and got taken to an actual hospital where they did a million tests and figured it out. After that, I got a post spinal tap headache, went back to the health center and a fifth doctor told me I had a migraine despite me asserting the post csf tap idea -- eventually passed out with less than good cerebral pressure, back to the hospital, rational diagnosis, etc. (never let med students do your spinal tap).What is CSF ? I never had headaches during the flu !
> Think of your fellow class of pharmacy students and think of the few you would feel comfortable asking for advice on something serious. That is the same percentage of specialists/doctors/etc who will be truly helpful. Just like our classmates, its hard to tell who actually will take your problems home with them to ponder, and you can't believe them saying "I'll have to think about this".Thats right, who does it really care ?
> So then, in this territory of difficult syndromes we are in, the 'foreign country rule' applies. This rule is as follows: if you are lost in a foreign country, ask direction of three separate people and average the replies.
>
> To answer your questions, I had a diagnosis of BP II, although I had never had a hypomanic or manic episode. Before that it was general anxiety and before that major depression. I am currently diagnosed as having attention deficit disorder without hyperactivity. Ritalin makes me calm and even, no more moodiness, so that's truly the first diagnosis that feels right since the major depressive episode. And finally my husband agrees psychiatric medicine is a good thing.I never had mania but 2.5 years ago when the depression came I was perhaps a little bit hypomanic (anger, doing things I never did before). I got depressed and was having the MONO (EBV) in this time.
> The klonopin was prescribed for anxiety, the neurontin as a mood stabilizer (though it actually was disinhibiting and made my moods look worse) and neurontin's beneficial effect for me was a great decrease in anxiety. It was after I raised the dose of neurontin from 200 mg TID to 300 mg TID that I started having problems.
>
> In general I feel that neurontin is a great drug -- I am also extremely sensitive to drugs (needed only 5 mg/day of Paxil to see a mood effect). Many people get used to the sleepiness... I actually never felt sleepy until 900, at lower doses I actually found it activating, probably through the reduction of anxiety somehow. So don't let my side effects dissuade you from a trial.People with ADD react often paradox to drugs !
> The reason I say that maybe neurontin/klonopin interaction sensitized me to this is only that I found I got many infections while on it. Lots of cold sores. Seemed like my overall immunity suffered. Weird because I felt good and usually if I feel good its because I am, LOL. So I mean only sensitized, for me, in terms of a lowered resistance to any infection. (Although I will always wonder if it pruned some neurons somewhere in my hypothalamus.)
>
> More questions for you:
>
> So the neurologist observed a peripheral sensory neuropathy? Can you expand on what they suggested you do next? Are you saying they found conduction abnormal but can not say why? or that they were not sure? or? I feel I'm missing a puzzle piece here.They found an absent sensory response of the peripheral nerves, but dont know what it means and if this is causing my symptoms !
They will redo the EMG/NCS in the hospital and perhaps a lumbal punction (spine liquid)
to look about infections etc.
I had often fasciculations in the muscles (fast repeated twiches) of legs during this 2 years and some docs are very interested in this (others dont care about it).> I'm sure the length of treatment with metronidazole to develop neuropathy is a statistical length of treatment.... why shouldn't you be at the short end of that? Is the exact damage that metronidazole is known to cause something you may have? or is it more like something similar? is this a reach or a possibility?
It is causing polyneuropathy sometimes but this should be reversible after coming off metronidazol. Perhaps the metronidazol was much more higher during Paxil treatment (enzyme interaction ?! hadnt found of any literature about that)
> As far as paxil: I'm not sure I undestand, are you really saying paxil is the one drug that helps the pain? So you have tried it since, then? With what exact effect? how long does it help for? How high of a dose of paxil can you tolerate and what are the side effects?
According my pdoc Paxil is the most probable SSRI in pain treatment (Prozac, Celexa and others do not affect pain). As I said a was on 30 mg/s of Paxil and had to come of it: weight gain, bruxism, awfull fatigue, restless legs and strong increased liver enzymes (likely from paxil ?! because it has gone away when I reduced it). It helped me for depression ! I didnt try it since because Is witched to a MAOI (Moclobemide = Manerix) after Paxil and these two drugs together would be dangerous ! I asked my pdoc to do a second trial with Paxil but he (and myself) arent very optimistic about the side effects. And if it comes to stop or switch Paxil is very bad to go off or combo treatment (strong CYP 2D6 inhibitor !). He suggested Effexor or Desyrel or Gamonil = Lofepramine. I am afraid that Desyrel would knock me out and Effexor leading to sweating and headaches (tried it up to 150 mg/d about 1,5 years ago and had to come off this reason!). Lofepramine acts like Desipramine on the noradrenaline system (tried Edronax = Reboxetine with a good initial response but pooped out and too much side effects !
> Because if paxil is the one drug that helps, it seems almost bizarre that it was the one drug you happened to have in your system (a small concentration to be sure) at the time you got the flu-symptoms and pain. I'm not saying it sounds like withdrawal. Puzzle piece though.
>
> "Something hidden in the brain." Would that be bad? Only if it stayed hidden. The two possibilities you are looking at are something in the peripheral nervous system or something central, unless its neuromuscular junction which doesn't seem logical. I can't think either is better than the other.Okay, but to get rid of the pain there is more chance if you know the reason !?
> Yes second opinion yes. Idiopathic just means not enough people have had it for it to be understood and identified and written up. A smart doctor could most likely find something that helped it feel better, controlled it, at least, if it can't be cured.
That would be great to find such a doc !
> Depression: with suicidal ideation that's got to be the first priority. Of course it may feel less painful if the depression lifts, because when we are depressed we naturally focus on negative things. What drugs have you tried for the depression since the pain started? I will look back at your other post as well, I'm curious.
Since january: Manerix up to 450 mg/d (Moclobemide a MAOI). Dose reduction of Manerix cause of nervousness anxiety to 225 mg/d. 3/02: Addition of Elavil (up to 20 mg/d).
4/02 Washing out of the Elavil and addition of the TCA Opipramol (Ensidon, Insidon) up to 200 mg/d. Now I only take the 200 mg/d Opipramol and 0.5 mg Lorazepam at night.
Tried without real benefits NSAIDs (Ibuprofen, Diclofenac, Piroxicam, Proxen), Paracetamol and Tramadol (only a few benefits !)> As to the percentages of people who don't test positive but are, very true. I have to guess you had a virus that altered some brain or peripheral nervous system function to the point it hurts. There's probably no reason not to try a few antiviral therapies: amantadine, acyclovir etc. As well as novel anti-pain therapy: neurontin, etc. I would guess you would better spend money on trying meds than finding the virus that did it. Unless the pain is getting worse it may well be gone from anyone's view.
The docs never thought about that and I think antiviralias are bad to tolerate and can affect the nerves too (they act cell based !).
>
> I know this is a really long email and I'm also hoping I haven't taken away any hope for a cure, I didn't mean to.
>
> Remember to take my ideas with a grain of salt, given I'm biased by my own nasty experiences with doctors who couldn't diagnose a hangnail let alone a real problem, plus bad experiences with some meds (including paxil).
What does it mean (sorry, my mother language isnt english):a hangnail let alone ?> Am really curious about whether paxil really helps your pain as I'm inferring.
>Why do you inferre Paxil helps with my pain ? I am confused: Okay it could help (but I am off and the pain started when weaned off Paxil very slowly !). Interstingly I never had coughs or flus on ADs since all started but now I seem to attract it.
ben
Posted by katekite on May 7, 2002, at 12:51:03
In reply to Re: post viral syndromes » katekite, posted by ben on May 7, 2002, at 4:15:51
Hi Ben,
> What is CSF ? I never had headaches during the flu !
CSF stands for cerebrospinal fluid, so the same test as you are thinking to do, a lumbar puncture for spinal fluid. About 10% of people experience a short term head ache after the test.
I had this test done to test for meningitis: it was a long time ago and unrelated to my recent hot syndrome.
>
> They found an absent sensory response of the peripheral nerves, but dont know what it means and if this is causing my symptoms !
> They will redo the EMG/NCS in the hospital and perhaps a lumbal punction (spine liquid)
> to look about infections etc.That sounds like a very good idea.
> I had often fasciculations in the muscles (fast repeated twiches) of legs during this 2 years and some docs are very interested in this (others dont care about it).
I had that also, actually, during the more extended times I have been ill with this thing. No one seems to have been very interested in it in my case, thus I didn't even remember to mention it to you.
>
>
> Okay, but to get rid of the pain there is more chance if you know the reason !?Oh yes, that would be good. I think I was suggesting that even if one can not find the cause there is still hope for treating it.
>
> Since january: Manerix up to 450 mg/d (Moclobemide a MAOI). Dose reduction of Manerix cause of nervousness anxiety to 225 mg/d. 3/02: Addition of Elavil (up to 20 mg/d).
> 4/02 Washing out of the Elavil and addition of the TCA Opipramol (Ensidon, Insidon) up to 200 mg/d. Now I only take the 200 mg/d Opipramol and 0.5 mg Lorazepam at night.
> Tried without real benefits NSAIDs (Ibuprofen, Diclofenac, Piroxicam, Proxen), Paracetamol and Tramadol (only a few benefits !)You have tried a lot of things! It seems clear that the NSAIDS do not help at all. Again I suggest trying each class of drugs to begin with rather than for example trying another tca or another maoi. Perhaps trazodone or neurontin.
>
>
> The docs never thought about that and I think antiviralias are bad to tolerate and can affect the nerves too (they act cell based !).
>
Supposedly amantadine is an antidepressant of sorts, although one would need to make sure anxiety was controlled first. I do not know anything about tolerability.Amantadine is the drug used to treat borna virus, I believe, which some German researchers believe is a cause of many psychiatric problems, in Germany. It is carried by livestock, I believe, but only in a small part of Europe. However, studies in the US show that a greater % of hospitalized mental patients have antibodies to it than the general population. But I know nothing of its effects on cells or its side effects.
> >
> What does it mean (sorry, my mother language isnt english):a hangnail let alone ?
>
A hangnail happens when the skin next to the fingernail is too dry and cracks open (usually from too much hot soapy water, jobs with a lot of washing, for example), causing a mildly painful 'hangnail' (a piece of skin hanging next to the nail). Not something one would need a doctor to diagnose. So I meant to say "some doctors I have seen are not able to diagnose dry skin"."let alone" is an expression that just links the two parts of the sentence in a conditional way that shows that the second part of the sentence is even more unlikely than the first part. One can say, "President Bush could not run a shoe store, let alone a whole country".
(that's a quote so I don't need to say its not a political statement, I hope)
> > Am really curious about whether paxil really helps your pain as I'm inferring.
> >
>
> Why do you inferre Paxil helps with my pain ? I am confused: Okay it could help (but I am off and the pain started when weaned off Paxil very slowly !). Interstingly I never had coughs or flus on ADs since all started but now I seem to attract it.I'm sorry -- I was confused. I thought you had tried paxil a second time after the pain started, but I read that incorrectly. It sounds like you do not tolerate paxil well enough to take it. I had not heard that paxil was more helpful for pain than other ssris.
I have tried moclobemide also and found it helpful for irritability when I was depressed, although I was a little too sedated by it. But very few side effects for me.
I think you could not do this while on moclobemide(I think they interact), but has anyone suggested buprenorphine or another morphine derivative painkiller just to see what the response is?
Talking about this has been good and I think I may try to see another doctor about my own hot syndrome. There must be someone out there who can at least guess at it. And there must be others such as you who have developed pain or abnormal nerve function after a flu-like illness.
Can I ask what your native language is? I would never have known english was not your first language, a few grammar changes but not different from what I might write if only a little tired. You write very very well.
I really hope you find the cause. Please keep me posted about what medications you try as its possible that something similar would help me (since pain and burning heat are not such different sensations).
Kate
Posted by ben on May 7, 2002, at 14:15:35
In reply to Re: post viral syndromes, posted by katekite on May 7, 2002, at 12:51:03
> > ...They found an absent sensory response of the peripheral nerves, but dont know what it means and if this is causing my symptoms !
> > They will redo the EMG/NCS in the hospital and perhaps a lumbal punction (spine liquid)
> > to look about infections etc.
>
> That sounds like a very good idea.My hope is not great but some grains of salt.
The problem is I have to wait for weeks now to get a hospital stay to check all possible causes. Its a lot of burocracy (is this word right ?). They make a lot of paper but when you call them you have to tell the hole thing at least 3 times that they know who is phoning :-I>
>Fasciculations: I had that also, actually, during the more extended times I have been ill with this thing. No one seems to have been very interested in it in my case, thus I didn't even remember to mention it to you.That can be very disrupting but as I said; who cares ? I saw a doc and he said: Oh, thats nothing to be anxious about, I had that too when I was a student and it has gone away.
Okay, but if depression an pain is present too, that should be watched !? Thats like docs saying there is no pain in MS - in fact 60 % of MS patients experience pain ! Perhaps you must be sluggy, slurring, optic disturbtions etc. that someone thinks you could have MS (that means only typical signs counts but in praxis only 10% is true of the textbook).
>
> You have tried a lot of things! It seems clear that the NSAIDS do not help at all. Again I suggest trying each class of drugs to begin with rather than for example trying another tca or another maoi. Perhaps trazodone or neurontin.
> >
My pdoc suggested Oxcarbazepine (an active form of Carmbamazepine = Tegretol) market as TRILEPTAL cause lesser side effects than Tegretol. As I said Gabapentin (Neurontin) isnt his first choice in my case because I am very sensitive to side-effects like dizziness, sedation, fatigue and thats a big problem with this drug. Fisrt he wants to wait the "investigations" in the hospital cause doesnt want to talk between.
>
> ....Amantadine is the drug used to treat borna virus, I believe, which some German researchers believe is a cause of many psychiatric problems, in Germany. It is carried by livestock, I believe, but only in a small part of Europe. However, studies in the US show that a greater % of hospitalized mental patients have antibodies to it than the general population. But I know nothing of its effects on cells or its side effects.There is no borna routine test in Europe as I know and the relevance is very shaky. The method to detect it right is very important and controverse discussed.
> "let alone" is an expression that just links the two parts of the sentence ......One can say, "President Bush could not run a shoe store, let alone a whole country".
Thats a good joke ! What about that: President Bush could not eat a beer ring, perhaps he drank a beer at the same time. (that's a quote so I don't need to say its not a political statement, I hope)
>
> I have tried moclobemide also and found it helpful for irritability when I was depressed, although I was a little too sedated by it. But very few side effects for me.Sedation on it could be a hint to ADD ?!
>...but has anyone suggested buprenorphine or another morphine derivative painkiller just to see what the response is?
Tell me a doc who would try this to a patient with psychiatric anamnesis and pain of unknown reason. They gave me NSAIDs for a hole army but nothing really potent besides Tramadol (Ultram) but this helpd not to an acceptable mass at doses of 50 mg-100 mg/d
- perhaps the doses were to low but its not very easy to take it with all ADs.
>
> Talking about this has been good and I think I may try to see another doctor about my own hot syndrome. There must be someone out there who can at least guess at it. And there must be others such as you who have developed pain or abnormal nerve function after a flu-like illness.I would be thankful to god.
> Can I ask what your native language is? I would never have known english was not your first language, a few grammar changes but not different from what I might write if only a little tired. You write very very well.
Thanks ! German (swiss german) is my language.
>
> I really hope you find the cause. Please keep me posted about what medications you try as its possible that something similar would help me (since pain and burning heat are not such different sensations).If I am able I will keep you updated. Today my pdoc gave me lithium as an adjunct...I hope I can tolerate it and see some improvements.
Next step would be switching to Effexor or Desyrel..I am afraid that Trazodone would knock me out cause of sedation so I am more for the Effexor. As you know there is only try and error.> Katekite
Do you like cats ? Katekite sounds like kitekat (a food for cats)...
ben
Posted by katekite on May 7, 2002, at 19:55:12
In reply to Re: post viral syndromes » katekite, posted by ben on May 7, 2002, at 14:15:35
Lithium. I will be interested to hear if it helps.
nicht katzen. and kate's not my real name either, but I'm more comfortable posting as kate.... I spent a year as a kid in germany... that's why my ears perked up when I heard about borna. But you are very right to say there is a lot of conflict about testing and what it means.
yes after moclobemide I got tested and may well have ADD. Ritalin sure works for me. I don't recall being quite this scattered as a child though, so wonder if it is something that is just years of depression or drugs or weird post viral things.
Keep posting and say how lithium affects the pain. (and your mood). People say it can really augment antidepressants.
kate
Posted by BarbaraCat on May 9, 2002, at 12:09:35
In reply to Widespread pain coming from depression ?!, posted by ben on May 4, 2002, at 13:17:07
Ben,
Have you had your thyroid checked lately? Not many people are aware that even a borderline low thyroid can cause muscle pain, peripheral tingling and muscle weakness. I have fibromyalgia as well as hypothyroid and experience many of those same symptoms, however, since increasing my dosage of T4+T3 the deep aching muscle pains and tingling have gone away. I also have to keep on top of my TSH because I'm taking Lithium. All of that said, there are reports about SSRI's (mainly Prozac, Zoloft) causing muscle pain because of a tendency of the more activating ones causing involuntary muscle clenching, bruxism.
Posted by ben on May 9, 2002, at 12:21:29
In reply to Pain from hypothyroid perhaps? » ben, posted by BarbaraCat on May 9, 2002, at 12:09:35
Hi Barbara
I had TSH between 1 and 2 at the beginning of the year. T4 was also in the middle range of
"optimal" level.
Thanks
ben
Posted by bookgurl99 on May 10, 2002, at 10:28:53
In reply to Widespread pain coming from depression ?!, posted by ben on May 4, 2002, at 13:17:07
> Ben,
good luck finding the source of your pain. i know it's very real for you.
i've had similar symptoms recently. i am hypothyroid, which could be a contributing factor. but most of the symptoms, after testing, were proven to be psychological in origin.
So, just to make you feel better, let me say that I dug out a book on pyschology and illness. Neuropathy is likely to cause symptoms along the length of your whole arm -- like a stripe -- plus the fingers that correspond to that stripe. If you are having "glove" symptoms -- in other words, symtpoms in most of your fingers, then the cause is likely NOT neuropathy.
This is not to say that your symptoms are not real. Tense muscles, antidepressant withdrawal, and hormone problems can do a lot to create the APPEARANCE of neuropathy. But if your tests are coming back okay, you can breathe easy knowing that you're fine.
Good luck.
Posted by ben on May 10, 2002, at 11:11:53
In reply to Re: Widespread pain coming from depression ?!, posted by bookgurl99 on May 10, 2002, at 10:28:53
>....i've had similar symptoms recently. i am hypothyroid, which could be a contributing factor. but most of the symptoms, after testing, were proven to be psychological in origin.
> So, just to make you feel better, let me say that I dug out a book on pyschology and illness. Neuropathy is likely to cause symptoms along the length of your whole arm -- like a stripe -- plus the fingers that correspond to that stripe. If you are having "glove" symptoms -- in other words, symtpoms in most of your fingers, then the cause is likely NOT neuropathy.So how do you deal with this if it makes you suicidal ? Glove symptoms are common for polyneuropathy !
I ahve never hears of withdrawal symptoms lasting half a year after coming off an AD very very slowly !? I think such stories are anectotal.>...... But if your tests are coming back okay, you can breathe easy knowing that you're fine.
>Okay, but what to do if the pain is such life disrupting !
> Good luck.
Thanks anyway
Posted by ben on June 15, 2002, at 11:15:45
In reply to Re: Widespread pain coming from depression ?! » bookgurl99, posted by ben on May 10, 2002, at 11:11:53
Nothing was found in the hospital !!! They think its somatoform ! I am sick of this pain ! 150 mg Effexor dont do anything, so want could be tried ? Ultram makes me dizzy and the pain isnt much better.
Posted by katekite on June 15, 2002, at 11:23:21
In reply to Re: Widespread pain coming from depression ?!, posted by ben on June 15, 2002, at 11:15:45
Hi Ben,
So they couldn't find the abnormality found before? What all did they do this time?
kate
Posted by ben on June 15, 2002, at 11:49:26
In reply to Re: Widespread pain coming from depression ?!, posted by katekite on June 15, 2002, at 11:23:21
lumbar puncture, rheuma screen, mri of the head, x-ray, emg and ncv...nothing....thats frustrating......
ben
Posted by Bookgurl99 on June 15, 2002, at 12:06:57
In reply to Re: Widespread pain coming from depression ?!, posted by ben on June 15, 2002, at 11:15:45
I understand how you feel -- I spent 3 months running from doctor to doctor trying to find out the cause of various symptoms. (Cognitive problems, especially short-term memory, including visual problems with scanning, reading that I never had before, trouble recognizing places, plus vomiting frequently, migraine headaches, intractable insomnia, and. . . drumroll. . . fasciculations of unknown origin.)
I also had some tests (mostly endocrine-related) come back in abnormal ranges, but the doctors didn't know what they meant -- it didn't fit their knowledge.
It was quite frustrating to be told that I had a somatoform disorder due to depression and anxiety. Like you, I had been treated for 2 years and was in a great place in my life when my symptoms popped up. It was hard to get them to believe that the anxiety/depression comes from having my life so dramatically disrupted.
Because doctors had so few answers, I gave up and visited a qualified naturopath. (She has a 4 year degree from the National College of Naturopathy in Portland, not some mail-order certification.) She came up with her own theory that I could have had a negative reaction to my SSNRI (Serzone), and helped me come up with an eating/lifestyle plan that works for me.
Despite my fears of returning to meds, I also went back onto a "small" dose of Zoloft.
I know that it's so frustrating, when you're aware that there are numerous diseases that doctors expect not to see in their lifetimes -- you want to be sure you're not the one 'rare case' that's being overlooked.
But giving up, empowering myself through naturopathic work, and just riding the wave has helped me a lot. I'm starting to see a decrease in symptoms. Probably in response to my new eating habits, my nausea left. But more difficult to explain, my visual symptoms have vanished, and my concentration seems to improve daily. I still have mild fasciculations, but their incidence is lowering too.
I realize - from talking to people who've gone through similar experiences -- that it will take months to feel completely normal. But right now I have 'pieces' of normal, enough to feel that there's a light at the end of the tunnel.
I don't know if what I did could provide an answer for you, but perhaps a piece of it could help you out.
Good luck,
bookgurl99
Posted by ben on June 26, 2002, at 10:32:49
In reply to Re: Widespread pain coming from depression ?!, posted by Bookgurl99 on June 15, 2002, at 12:06:57
Hi
Started on Neurontin very slowly yesterday (100 mg at night) and hope it would do something against my fibro-like pain in the legs and elbows/forarms.
What do you think. When could I expect some pain relief (days or weeks) and what ddose should be reached ?Thanks
Posted by BarbaraCat on June 26, 2002, at 18:55:06
In reply to Re: Widespread pain and Neurontin, posted by ben on June 26, 2002, at 10:32:49
Hi Ben,
I have fibromyalgia and started Neurontin a few weeks ago. Was up to 1200 mg and it seemed to help at first in that I felt more tranquil on it. But it seemed to lose that nice side effect pretty quickly, or else I got accumstomed to it. I stopped taking it this past Monday and will see if I notice anything one way or the other. Pains are still there and I'm now in my 4th day of a juice fast to clear things out and hopefully deal with it without more meds. - BarbaraCat> Hi
>
> Started on Neurontin very slowly yesterday (100 mg at night) and hope it would do something against my fibro-like pain in the legs and elbows/forarms.
> What do you think. When could I expect some pain relief (days or weeks) and what ddose should be reached ?
>
> Thanks
Posted by Bookgurl99 on June 26, 2002, at 21:23:57
In reply to Re: Widespread pain and Neurontin, posted by BarbaraCat on June 26, 2002, at 18:55:06
Hey,
good luck with your juice fast!
i did one recently. i found that i was tired during the fast, but felt much better after than i had before.
stick with it!
elisa derickson
Posted by BarbaraCat on June 27, 2002, at 11:56:04
In reply to Re: Good luck with juice fast! » BarbaraCat, posted by Bookgurl99 on June 26, 2002, at 21:23:57
Thanks. I started on back raw foods yesterday, but feel so much better. I'm going to continue with this as long as feels comfortable and healthy. I want to lose 30lbs, help my fibromyalgia and simplify my diet and life. I suspect there's liver toxicity going on from all these meds.
I read on another thread that you were having some Zoloft blackness recently. I also experienced that on Zoloft, even though it was a relatively good drug for me. What I learned since is that I can't take SSRI's or their analogs by themselves. Being BPII I also need lithium, otherwise I get classic mixed states with the engulfing panic, despair and overwhelm. Hope you're doing better. - BarbaraCat
> Hey,
>
> good luck with your juice fast!
>
> i did one recently. i found that i was tired during the fast, but felt much better after than i had before.
>
> stick with it!
>
> elisa derickson
Posted by bookgurl99 on June 27, 2002, at 16:03:00
In reply to Re: Good luck with juice fast! » BarbaraCat » Bookgurl99, posted by BarbaraCat on June 27, 2002, at 11:56:04
BarbaraCat, I have less depression, less sadness, but lower cognition. (An ongoing issue for me in the last four months.) But, I'm going to see an endocrinologist next week, and have talked to people online who are living well with the condition I fear I may have. (They've said "I'm going to control this illness as much as I can instead of letting it control me," an attitude I really needed to hear).
I'm realizing that, fearful as it is to have a condition that's affecting my cognition, I can do what I can in my power try to get properly diagnosed and treated, and live my life the best as I can afterwards. And part of me is realizing that I still have hope for healing.
Thanks,
bookgurl99
Posted by kpo2002 on August 3, 2002, at 2:39:00
In reply to Widespread pain coming from depression ?!, posted by ben on May 4, 2002, at 13:17:07
Dear Ben
People who have, or have had mental illness are treated as second-class citizens.People who are depressed are not given adequate medical attention and all of their symtoms are attributed to their mental illness.
I would advise you to continue to doctor-shop, but this time around DO NOT MENTION that you have ever had treatment for mental illness. Do not mention that anyone in your family ever had any kind of mental illness or substance abuse.
Doctors just automatically assume that you are exhibiting psychosomatic symptoms or that you are seeking drugs to party on, or that you can use sleeping pills or narcotics to commit suicide with, or that any use of narcotics would lead to narcotics abuse.
remember: they only know what you tell them.
This is the end of the thread.
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