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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by Guy on January 22, 2005, at 18:56:45
My primary diagnosis is anxiety disorder (constant and unrelenting), but in the past few months this disorder has morphed into anxiety PLUS chronic pain syndrome, also known as fibromialgia. I have headache, neck ache, back ache, and, worst of all, terrible pain in my left shoulder. My GP says there is nothing he can do, and my pdoc also seems at a loss. I am currently taking 10 mg Zyprexa plus .5 mg clonazepam, but there is little relief and the black hole seems more and more inviting. Please, any suggestions would be greatly appreciated.
Posted by Maxime on January 22, 2005, at 19:56:33
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
You poor thing! Neurontin is good is for nerve pain and other pain as well. Maybe that would be an option as it does have a calming effect so it would be good for your anxiety.
MAxime
> My primary diagnosis is anxiety disorder (constant and unrelenting), but in the past few months this disorder has morphed into anxiety PLUS chronic pain syndrome, also known as fibromialgia. I have headache, neck ache, back ache, and, worst of all, terrible pain in my left shoulder. My GP says there is nothing he can do, and my pdoc also seems at a loss. I am currently taking 10 mg Zyprexa plus .5 mg clonazepam, but there is little relief and the black hole seems more and more inviting. Please, any suggestions would be greatly appreciated.
Posted by Maxime on January 22, 2005, at 20:02:36
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
Oh, and I forgot. Elavil is used for chronic pain as well. It's trycyclic AD. I found it VERY sedating but that was my response to it. Yours might be different.
Maxime
Posted by Impermanence on January 22, 2005, at 20:10:44
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
Stop taking Zyprexa now, I don't understand why you where put on this for anxiety, stupid pdocs seem all too keen on this poison lately. You need something to lift your mood and help you get moving again not drain the soul out of you. Antidepressants should help and are a usual course of treatment, also Tramadol (Ultram) is a powerful analgesic that binds to µ-opioid receptors and inhibits reuptake of norepinephrine and serotonin giving it Antidepressant qualities as well, it's known to be successful in the treatment of fibromyalgia.
Heres a good link with lots of reading:
http://www.nlm.nih.gov/medlineplus/fibromyalgia.htmlStay positive Guy and get off that bloody antipsychotic, it's not helping you. And get a new GP and PDOC while you're at it.
Good luck.
Posted by Colleen D. on January 22, 2005, at 20:11:27
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
From what I've read, Effexor and Cymbalta have shown to be helpful for chronic pain. I haven't been diagnosed with fibromyalgia, but I do have chronic pain: migraines, sciatica, pain in other joints as well and my GP recommended these two meds. Both helped immensely. I'm still on Cymbalta at 60mg and it makes the difference between being physically active and healthy feeling, and being barely able to function through the day. Ask your doc about these and see what he thinks. Good luck!
Colleen
Posted by sabre on January 22, 2005, at 20:52:15
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
Hi Guy
I get some relief using phenylalanine.I have also read that combined noradrenaline and serotonin reuptake inhibitors like Duloxetine (Cymbalta) and Effexor are useful.
Here are some interesting links on fibromyalgia and medications:
http://www.biopsychiatry.com/fibromyalgia.htmlsabre
Posted by laurie_lu on January 23, 2005, at 0:50:10
In reply to Re: Anyone else with fibromialgia?, posted by sabre on January 22, 2005, at 20:52:15
Effexor did NOTHING for my pain. I eliminated whole wheat from my diet and the pain is almost non-existant now. Sometimes whole wheat allergies are confused with FM pain. I also began taking 5-HTP which has been proven by many patients to decrease FM pain. I won't put another man made AD into my body again.
Posted by lunesta on January 23, 2005, at 4:25:38
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
me, and cfs, and tmj. I am a relative expert and talk to many of the top rserchers, doctors and am a voluteer and member of the NCF and even talk to Gail Kansky (president of the NCF) personally.
I didnt read your post yet, just the topic, ill repsond later though..
lunesta
Posted by dancingstar on January 23, 2005, at 9:38:22
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
I noticed that I got what we thought was fibromyalgia after I started to take Effexor. I took it after a simple back injury for a bit of fatigue. Six months later I had chronic fatigue and fibro. Three years later I stopped the SNRI, and the symptoms all vanished.
I can now feel the original injury, but difference is extreme. No pain in every muscle, and no severe fatigue.
Posted by Cairo on January 23, 2005, at 17:01:20
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
I, too, have Fibromyalgia. All of the above suggestions are valid, but it remains to be seen which may help you as I believe FMS has different etiologies in different people.
A good baseline workup should include tests and scans to rule out Lupus, Lyme's disease, hypothyroidism/Hashimotos disease, rheaumatoid arthritis, MS, etc. Hypothyroidism, for example, can present with similar physical symptoms and Synthroid may relieve the symptoms.
In many cases, all the above are normal and Fibromyalgia becomes the diagnosis by exclusion. The Rheumatologist I see specializes in FMS and says that few of her patients are helped very much by SSRIs, anti-inflammatory drugs and even Effexor. While Elavil may help, she says most of her patients can't handle the side effects and feel it's not worth it. I personally think it depends on the person.
Few meds help me other than sleep meds and LidoDerm transdermal patches. I currently use trazodone 100mg at bedtime. Cymbalta has been the only med that helps my energy, focus and some of the other symptoms of HPA axis hypofunction, which is often seen in FMS, but nothing much helps the tight muscles other than heat, stretching and not overdoing things. I avoid all stimulants (caffeine and the like) and try to avoid stress (easier said than done).
Trigger point therapy or massage works, but doesn't last with me more than a couple of hours.
A good physical therapist who knows techniques such as Paris or Maitland can release tight muscles and it's alot less painful than the trigger point shots and having someone knead painful muscles.You also need a sleep study. My doctor says that over 75% of her patients show sleep apnea. I think some are due to mechanical obstruction, but some (like me) have a more central origin. Unfortunately, antidepressants can cause or make sleep apnea worse. Using a CPAP machine for sleep apnea has helped a bit, but it may take a couple of months to see any benefit if you have a large sleep deficit.
The most important thing is to find a doctor who really knows about Fibromyalgia and the most current theories and therapies. I've had too many write me off as attention seeking or having the attitude that there's nothing that can be done.
As I said, causes are very individual and it pays to find out what is going on in your particular case.
I am going to try Botox injections into selected muscles, but I can't comment on whether this will be successful or not. It should be, but may take several courses to see any results.
Here is an interesting newsletter that keeps you up to date on FMS: http://www.fmnetnews.com/
Good luck!
Cairo
> My primary diagnosis is anxiety disorder (constant and unrelenting), but in the past few months this disorder has morphed into anxiety PLUS chronic pain syndrome, also known as fibromialgia. I have headache, neck ache, back ache, and, worst of all, terrible pain in my left shoulder. My GP says there is nothing he can do, and my pdoc also seems at a loss. I am currently taking 10 mg Zyprexa plus .5 mg clonazepam, but there is little relief and the black hole seems more and more inviting. Please, any suggestions would be greatly appreciated.
Posted by sabre on January 23, 2005, at 20:13:42
In reply to Re: Anyone else with fibromialgia? » Guy, posted by Cairo on January 23, 2005, at 17:01:20
Guy, you could also try reading the posts on magnesium in Alternative Babble.
I have found magnesium reduces the incidence of trigger irritation and makes the muscle feel pliable and loose.sabre
Posted by Dr. Bob on January 25, 2005, at 8:54:12
In reply to Re: Anyone else with fibromialgia?, posted by sabre on January 23, 2005, at 20:13:42
> Guy, you could also try reading the posts on magnesium in Alternative Babble.
> I have found magnesium reduces the incidence of trigger irritation and makes the muscle feel pliable and loose.Trying Alternative is a good idea. Here's a link:
http://www.dr-bob.org/babble/alter/20050101/msgs/447307.html
Thanks,
Bob
Posted by chris777 on February 16, 2005, at 0:48:19
In reply to Anyone else with fibromialgia?, posted by Guy on January 22, 2005, at 18:56:45
> My primary diagnosis is anxiety disorder (constant and unrelenting), but in the past few months this disorder has morphed into anxiety PLUS chronic pain syndrome, also known as fibromialgia. I have headache, neck ache, back ache, and, worst of all, terrible pain in my left shoulder. My GP says there is nothing he can do, and my pdoc also seems at a loss. I am currently taking 10 mg Zyprexa plus .5 mg clonazepam, but there is little relief and the black hole seems more and more inviting. Please, any suggestions would be greatly appreciated.
Have you had any changes recently, that might have triggered the fibromyalgia? medication, or accident?
My Fibro was apparently triggered by topomax back in 2000, the doctor kept going up on the dosage, as it is also used to help with pain, only the higher the dose the more I hurt. until We decided to take me off of it. and after the tingling subsided , the pain did not.
Posted by dafoefan on February 18, 2005, at 14:09:09
In reply to Re: Anyone else with fibromialgia?, posted by chris777 on February 16, 2005, at 0:48:19
I have fibro. I have had it for several years. My grandmother had it and so does one of her children. There are many opinions on fibro, and I would take them with a grain of salt. Do what you feel is best for you.
I would see a rheumatologist first as they are generally the most knowledable.
I agree that you should not be on zyprexa - it is for bipolar. If you are bipolar, than that is a different issue.
Read as much as you can and find a supportive doctor that will let you try different meds. What works for one does not work for another. This disease is very bizarre, it seems to make our bodies most unique and we just have to find what is best for our own body.
I will tell you what I take, but it doesn't mean any of these meds would work for you. I have tried many others, some throwing down the toilet the first day, other deciding after sometime that nothing was happening, and moving on.
So here goes with my meds:
300 mgs neurontin - 1 am, 1 noon, and 2 at bed
150 mgs effexor - am
7.5/750 vicodin as needed (max 4 per day)
500 mg robaxin as needed (max 3 per day)
10 mg Flexeril as needed (max 3 per day)
1 mg clonazapam at bed for sleepPlease do a lot reading and really listen to your body, think back about the changes in your body, what works and what doesn't. Good luck to you. This disease is a bitch.
Posted by todayisagiftxx on February 18, 2005, at 15:13:26
In reply to Re: Anyone else with fibromialgia? (long) » chris777, posted by dafoefan on February 18, 2005, at 14:09:09
I was diagnosed with fm about 2 years ago, but i had it for about 6 before i had a diagnosis made. The symptoms started when I was 16. I was pretty young. The basis really is your sleeping patterns need to be under control it is the basis for all the pain. My doctor says that Trazodone works the best out of anything hes seen and he's been treating strictly fibro patients for a long time. A good pain med once the sleep is controlled is also necessary no matter what a stupid doctor says, you need to find one that will do that. The doctors that treat this well are few and far between and that is the major problem with this syndrome. My doctor moved 2 hours away to albany so i go there to see him, i will not allow any other doctor to treat it, been that route and had bad results.
right now i take
Cymbalta- 60mg (not sure how i feel about this yet)
Topamax- 100mg
Trazodone- 100mg
Vicodin-5/500mg as needed
Adderall XR- 15mg
Posted by barbaracat on February 21, 2005, at 16:51:46
In reply to Re: Anyone else with fibromialgia? » Guy, posted by Impermanence on January 22, 2005, at 20:10:44
Hi Impermanence,
Firstly, yes, I also have fibromyalgia. Dx'd with it in 2000 but had symptoms for long long time. Can't tell if it's the result or cause of my mood disorder of bipolar. Awful, nasty condition. But mine has improved 80% with attention to how my malfunctioning hypothalamus (one theory of fibro) has affected my entire hormonal system and addressing that with conventional and naturopathic treatment.But back to you, Imper. I don't want to hijack this thread and we can go to a separate one, but I'm very intetested in your ideas about 'bloody antipsychotics'. I'm inclined to agree with you. I've been having APs foisted on me by pdocs for the past few years and every time I've given in have had miserable results.
I do just fine on lithium except for the damage to my thyroid, and would like to find SOMETHING but it seems the new trend to is use APs as stand alone mood-stabilizing therapy. Nuts!! It makes no sense at all! They're NOT mood stabilizers!
APs work primarily on downregulating dopamine in an attempt to muffle the excitatory response, and but do nothing to effect the ionic electrical potential where TRUE anti-convulsive mood stabilizing occurs. There's even a new med that combines prozac and olanzapine (I think that's the drug combo. My new therapist was trying to push it on me). What is going on with this profession???? I've grown so paranaoid at anything put out by drug companies and I wish for our sakes they'd get their greedy little acts together.
> Stop taking Zyprexa now, I don't understand why you where put on this for anxiety, stupid pdocs seem all too keen on this poison lately. You need something to lift your mood and help you get moving again not drain the soul out of you. Antidepressants should help and are a usual course of treatment, also Tramadol (Ultram) is a powerful analgesic that binds to µ-opioid receptors and inhibits reuptake of norepinephrine and serotonin giving it Antidepressant qualities as well, it's known to be successful in the treatment of fibromyalgia.
>
> Heres a good link with lots of reading:
> http://www.nlm.nih.gov/medlineplus/fibromyalgia.html
>
> Stay positive Guy and get off that bloody antipsychotic, it's not helping you. And get a new GP and PDOC while you're at it.
>
> Good luck.
Posted by SLS on February 22, 2005, at 7:51:21
In reply to Re: Anyone else with fibromialgia? » Impermanence, posted by barbaracat on February 21, 2005, at 16:51:46
I don't know if anyone has already mentioned this, but it seems that Cymbalta (duloxetine) is demonstrating success for the treatment of fibromyalgia.
- Scott
Posted by barbaracat on February 22, 2005, at 15:04:52
In reply to Re: Anyone else with fibromialgia?, posted by SLS on February 22, 2005, at 7:51:21
Oh jeez, I was just on Cymbalta and am still in bed recovering from it. There are quite a few recent posts on that subject on the Babble board.
I think it may be a very good AD for someone without BP, but it nearly sent me over the edge. I did start getting antidepressant effects, but for a BP-II it was way to activating. And yes, it is indicated for pain, but I think I'll stick to Tramadol which follows similar neurotransmitter pathways and gives a nice little buzz to boot. - Barbara
> I don't know if anyone has already mentioned this, but it seems that Cymbalta (duloxetine) is demonstrating success for the treatment of fibromyalgia.
>
>
> - Scott
Posted by SLS on February 22, 2005, at 15:40:51
In reply to Re: Anyone else with fibromialgia? » SLS, posted by barbaracat on February 22, 2005, at 15:04:52
Hi BarbaraCat.
> Oh jeez, I was just on Cymbalta and am still in bed recovering from it
What is it about Cymbalta that creates the need for you to stay in bed? What are you experiencing? Is it withdrawal that has you in bed or is it the direct effects of Cymbalta while you were on it?
Did Cymbalta make your pain better, worse, or unchanged?
Thanks in advance for responding.
- Scott
Posted by barbaracat on February 22, 2005, at 16:49:28
In reply to Re: Anyone else with fibromialgia? » barbaracat, posted by SLS on February 22, 2005, at 15:40:51
HI Scott,
Good to talk to you again. There are quite a few posts on the board that I wrote that go into my experience with it in detail. Here in my bed cave I don't have much else to occupy me. I don't have the presence of mind to find them and link to them right now, sorry. But I'm happy to answer what I can here.I was recently in the hospital with what you'd call a 'nervous breakdown', a better term I can't improve upon. I had been on lithium and St. John's Wort, which was working quite well to maintain a fair to medium mood state. I hit a very stressful skid however and things fell apart.
While I was in the hospital I was taken off lithium due to a high TSH level (I have hypothyroidism and lithium doesn't help) and put on depakote and seroquel. This left me feeling very lethargic and depressed. After I got out, I was taken off depakote and put on high dose seroquel to be used as the primary mood stabilizer (it sucks). Cymbalta was added at 30mg because I was still very depressed and experiencing mild panic attacks.
Since I have fibro, my precscribing doc suggested Cymbalta because of it's purported pain benefits. The first few days were ok and fun, if a little anxious, but I realize now that I was escalating into a hypomanic state, probably because I was not taking lithium.
I didn't notice any particular pain benefits, but I wasn't going through a flare and my fibro pain has been under good control for the most part. However, Cymbalta felt like an acid trip. Colors, melting objects, fantastic phantasies, a wild electricity, visions. This felt a bit unstable but OK, but then I started having tight claw-like tension in my head and neck and a crab-like cramping contracting in my limbs on the outer periphery of my body. Cymbalta usually causes nausea and I was vomiting from it. I was also experiencing a weird manic anxiety but not particularly caring about it. I did notice very pleasant antidepressant qualities that gave me great hope for the drug. I've been severely depressed and it seemed to be lifting it. But the other symptoms were just too much.
I stopped both Cymbalta and seroquel and went back to lithium and SJW. The whole ordeal was very exhausting since I wasn't sleeping much (Cymbalta can cause insomnia). I also was very constipated no matter how much psyllium, flax or whatnot (Cymbalta can cause constipation).
Scott, I don't know what all played into this reaction. I definitely need lithium, that much is sure. I was already heading into a hypomania when I was on just the seroquel. It's possible if I'd been on lithium it would have been different. It's possible if I weren't on a high dose (400 mg) seroquel (which I hated) the effect would have been different. In short, I was already hypomanic and Cymbalta is extremely activating and who knows what of the other meds were interacting.
It's unique in that the NE kicks in almost right away which is probably great for someone who needs it, but probably not the best thing for someone fighting off panic attacks and a mixed state depression.
I also wonder about the psychedelic effect I got - I mean I was tripping - and this is generally a high serotonin condition. The claw/crab-like feelings are typical of too much serotonin, in fact. Did I feel any lessening of pain? I was too wigged out to notice. But I did feel more tension and body dysphoria on it than not.
But, interestingly, when I stopped everything and went back to lithium, for two days I felt an incredible peace, no depression, clear thoughts, and no pain. I wonder if that was a residue of what was good in Cymbalta and a taste of what it might have been like had I been able to stay with it. But the depression came back with a vengeance and I am very tired. I'm back to a very stringent a healthy detox diet and lots of rest and feel with my med sensitivity, this is the the best thing I can do for myself.
So, I may not be the best example because of the dire straights I was in emotionally and the rapid changes in meds I was going through and the fact that this gal needs lithium. Moral of the story, don't start Cymbalta if you're in the middle of a depressed hypomania, and start very, very slowly. They usually start you at 30mg, but that in my opinion, is way too much. You can open the capsule and start with 3-4 sprinkles (yes, I mean 3-4 little teeny grains of the stuff) and work up from there.
I might even try it again when I'm not in this hypersensitive place, but reading the possible side effects, I don't think I want to risk it. I've also heard that it can have sexual side effects, but as one satisfied customer said 'she couldn't orgasm but didn't really care'. I guess you just have to try it, but please, go slowly with it. Hope this helps somewhat. - barbara
>> > Oh jeez, I was just on Cymbalta and am still in bed recovering from it
>
> What is it about Cymbalta that creates the need for you to stay in bed? What are you experiencing? Is it withdrawal that has you in bed or is it the direct effects of Cymbalta while you were on it?
>
> Did Cymbalta make your pain better, worse, or unchanged?
>
> Thanks in advance for responding.
>
>
> - Scott
>
This is the end of the thread.
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