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» LymeNet Flash » Questions and Discussion » Medical Questions » Fibrolyalgia (mis)diagnosis - questions about Lyrica/Cymbalta

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Author Topic: Fibrolyalgia (mis)diagnosis - questions about Lyrica/Cymbalta
jtavares76
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Of course I went for a consult with a rheumatologist yesterday and guess what...he diagnosed me with fibromyalgia.


I figured this would be that case midway through the appointment when he started pushing Lyrica and Cymbalta as a cure all for my symptoms.


Anyway, he couldn't give me a cause for fibromyalgia (which I know there isn't one) and I questioned whether it could be caused by untreated lyme disease (I knew what his answer would be but I have a hard time keeping my mouth shut), he told me you don't have lyme.


He then proceeded to "explain" my Western Blot and informed me (while snickering) that he wasn't aware that there are alot of ticks in my city.


Are you kidding? I live in southeastern Massachusetts and ticks are everywhere. Not to mention I have worked at a summer camp for the past three summers in the middle of the woods!


Anyway, I know the fibro is casued by the lyme infection but I was wondering if anyone has taken either of these meds to try and control some of the symptoms.


I don't see my LLMD until June so in the meantime, I am kind of left to deal with the symptoms. Does anyway think either of these meds will help in the short term?

JT

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bwillis
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before I even knew about Lyme I received the same diagnosis from a very god doctor at a pain management clinic except he was open to the fact that it might have come from lyme.

Many of the good and caring doctors see a connection between lyme and these pain syndromes but don't see antibiotics as a treatment.

I went on cymbalta and lyrica, and I still use lyrica to help with sleep. They were both very beneficial and allowed me work and carry on for nearly a year. At one point I thought I didn't need them any more I felt so good, that's when the Lyme turned really ugly and I began looking for other answers.

Might try these medications on the way to complete treatment. They may help.

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sutherngrl
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I use to take Lyrica 3x a day. It did dull my pain just a little, but I got tired of the side effects of it. It made me feel drunk. I took it just at night for a few months which was good for sleep.

I don't do well with antidepressants. When I got my mis-diagnosis of FM, the rhuemy tried to get me to take Cymbalta also. I said NO WAY!

I guess it is worth a try if you feel that you need an antidepressant. Many do get relief using them.

Isn't it funny how every doctor on every corner will hand out antidepressants like candy to Millions of people with "FM"; but they snicker when you bring up a ligitament illness such as LD.

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kelmo
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My daughter did Cymbalta for a year. Didn't notice a lessening of pain.

Lyrica was useless to her.

Is your pain mostly in your back? We haven't found anything to help with that pain.

She did vicodin for three years. That has stopped working, and she doesn't want to progress to the next level of addictive drugs, so she is pulling off of it.

It's been a hard month.

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cactus
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No experience with Lyrica here. It's been offered and I've refused for fear of weaning off of it later.

Cymbalta helped lessen the intense burning pain in my hands and feet.

Didn't fix it, just made it bearable.

It's not a permanent answer, though, and to be honest - getting off of it can be very hard.

While I'm still on it, I would caution you to read about people's experiences weaning down from it before you go down the Cymbalta path.

Wish I had better researched it before starting it!

There must be a better option for you to use before starting your Lyme treatment, if it's only going to be for a few months.

Hoping you find something to help soon.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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dmc
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Did cymbalta...hated side effects. I am now trying the lowest dose 25mg of Lyrica but only at night or in day if pain extreme.

Did vicoden for yrs but abxs have diminished need for that strong.

Did a low dose neurotin 100mg (gabapectin) that helped too. My pcp recommeded I try the Lyrica. The 50mg makes me so loopy the next day. the 25mg is more tolerable.

Neurotin didn't give me any noticable side-effects. I'll probably go back & stick with the neurotin (gabapectin)

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LymieLaura
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I was also diagnosed with fibromyalgia before I found out I had Lyme. There has been one drug that has been fairly helpful to me and that is amitriptyline. It is an anti-depressant, but only works as an anti-depressant in high doses (200-300 mg) The dose I was given was 10 mg at bedtime. It helps with sleep and even more beneficial it actually helps with the pain. Supposedly it changes the way your body recieves pain signals.

I am very sensitive to medications and have tried everything for my pain. The newer anti-depressants (Cymbalta, Lexapro, etc.) gave me horrible reactions and that's why I was SO scared to take amitriptyline. However this medication works different than the others and I have had NO side effects from it.

I would highly recommend this to anyone dealing with fibro pain - I know how you feel - I know how bad the pain can be.. and this drug has helped better than anything else I have taken (including narcotics)

It's worth a try if you're suffering.

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kam
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A primary doctor recently started me on neurotin (gaba) as insurance would not provide lyrica.

I take two at night and am still in shock that i am sleeping through the night.

I also take glycine, melatonin, generic resteral..but was in and out of sleep with those products.

It was not until the gaba was added that I really started sleeping through the night.

he upped the dosage to one in the am. But, I did not take it yesterday. I get the loopy feeling and did not want the loopy feeling yesterday.

I most likely will take it today as I have all ready had my morning outing and will be a couch potatoe now.

Still trying to figure out if it is a good thing I am taking this or not.

I seem to be able to drive a bit further and sit upright a bit further and be on my feet a bit more.

But, I also am having pain when I lie down. I assume it is because I am more active now.

Teh pain is worth being able to be a bit more active.

It has been good for my soul to be outdoors.

I haven't talked to my LLMd about this yet.

I did talk to him a while back about being on lyrica and some other meds.

he said at the time that he had lots of different meds he would like me to be on over time but he is not able to get them through the drug companies for me due to being on medicaid.

And medicaid will not provide them. So catch 22.

bottom line is I am assuming it is OK with my LLMD for me to be on the substitute for lyrica...gaba or neuro..something.

My brain seems to be working a bit better too.

I just haven't decided whether it is enough to continue with the product or not.

For now...yes.

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kam
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Several of us came down sick at work the same time.

One of the others who came down sick said lyrica really changed the quality of her life.

She is OK with the fibro dx and is not interested in looking into lyme disease.

She is off on a cruise right now. And the lyrica has helped her to travel to lots of different countries.

She is higher functioning than I am and received approval for workmen's comp with the fibro dx.

Go figure.

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Capa
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I was dx'd with fibromyalgia by two different Rheumatologists. The second one put me on Lyrica and it made me SO dizzy that I was falling all over the place. I only stayed on it for 3 days and then had to go off.

--------------------
Lisa D

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Keebler
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-

Glad to see that (in June) you going to see a LLMD. Be sure to get on their list in case of cancellation.

I'll post a few books below that may help you in the meantime.


THAT is the most important. Other stuff meant to be a band aid will not work if the underlying cause is not addressed.

Even then, anything else that puts a stress on your liver can slow down or derail success. While lyrica may be more metabolized by kidneys, it still adds to the stuff your body has to detox when it's already maxed out with lyme toxins.


Some here have found a certain amount of help with either of those but many have not. I tried the parent drug to lyrica, in doses far smaller than lyrica and was just turned to jello. Vertigo increased, muscle weakness was severe. I tried several times. I really wanted this to work. It was a disaster for me with each try.


And if you listen closely to the announcer at the end of the TV commercial for cymbalta, or read about the side-effects and risks about it, you might want be reconsider.


You should be taking liver support (as all lyme patients are instructed to do) but if you take cymbalta, be sure to talk with your doctor about how much liver support is needed. It may be that you would need additional measures.


First, have you not had success with good levels of magnesium and fish oil? Those often help many symptoms. Both are amazing, actually.


Good luck with whatever you decide.


-

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Keebler
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-

I'm sorry. I went back an re-read. I see you will see your LLMD in June.

I'll come back with a few books that will help you in the meantime.


-

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ElaineC
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I too am searching for help with pain and sleep....tried Gabapentin but gave me such a burning itchy scalp I thought I would rip my head off.

Then tried Lyrica, 50mg at bedtime. Stopped this after 3 weeks as was leaving me so wiped out and loopy and still wasn't helping pain and sleep was still broken after first 7 days on it. I even feel like I am still trying to get it out of my system and this is a week later!

Interesting post about Amitriptyline....maybe worth another try.

My LLMD also suggested Trazadone...anyone have experience with this? Does it actually help pain as well as sleep??

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Keebler
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-

I tried Amitriptyline, trazadone . . . all that and it all really messed me up. Others do seem to do better than I with pharmaceuticals but often, the symptoms are brought on by a deficiency in vitamins or magnesium. Lyme patients are often very deficient in magnesium.


Magnesium and fish oil can help decrease pain tremendously - as well as helping with sleep, bowel health, mood, etc.


More about that here:

www.vrp.com

Pull down from the products search to an article search and you'll find a wealth of information.


======================


Back to what can be done while waiting to see a LLMD in a few months, you can call that doctor's office and ask for their suggested reading list, diet, or supplement list. Many LLMDs incorporate methods from all three books below. After you read and settle on what calls to you, you might call your LLMD's office and ask if that seems reasonable for the interim.


(Disclaimer: I am not a health professional. My suggestions are simply from my own experiences and reading from a span many years.)


If you want to keep it very simple, I'd suggest either Olive Leaf Extract, allicin or andrographis and then supportive measures like milk thistle, vitamin and mineral supplement (with additional magnesium to bowel tolerance) and fish oil.


I would try to avoid all pharmaceuticals that are not required by other health issues you may have. Many over the counter products can be very hard on the body, too. Tylenol is especially hard on the liver.


Dietary guidelines by both Burrascano and Singleton are good. If you can get on board with that before your June appt. you will be far ahead.


========================


Within this are many suggestions about self-care, diet, GENTLE exercise (no aerobics) - and supplements, some of which are essential.


http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano'sTreatment Guidelines (2008)


Within that you will find:

http://www.lymepa.org/Nutritional_Supplements.pdf


Nutritional Supplements in Disseminated Lyme Disease (Burrascano, 2008)


=======================


This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com


=================


http://tinyurl.com/5vnsjg


Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

web site options: www.gaianstudies.org/lyme-updates.htm


================


http://tinyurl.com/5drx94


Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com


-

[ 03-21-2009, 02:26 PM: Message edited by: Keebler ]

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soleil16
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I took Lyrica for about 8 months after my fibro diagnosis in January 2008. I noticed that after a while, the dose I was on stopped working and I would have to ramp up to the next level to get any relief. A Lyme friendly doctor who diagnosed me told me to stop it, but he failed to have me taper down slowly enough. I ended up with severe withdrawL that almost landed me in the hospital.
So these can be a good fix but also dangerous for some.

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ElaineC
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Carol, what dose did you need to get relief?
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ugagal
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When I was suffering from the pain caused by interstitial cystitis, I was put on Cymbalta and Ultram at the same time....I ended up in the ER after experiencing a rather severe Grand Mal seizure. ER doctor said it was due to the two drugs being taken together.

If you decide to take Cymbalta, please be careful about mixing certain pain meds with it. I learned the hard way [Frown]

--------------------
My comments on this site are not intended to be taken as medical advice as I'm not a physician.

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MY3BOYS
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i take cymbalta in am and HAS helped me with neuropathy and ridicular pains

i was hesitant and makes it worse b/c i do have good knowledge of pharmacology, but with neuro i trust and with the big time pain from neruopathy was worth a shot

still taking it, has not effect as far as sleep aid for me

will say, neuro still mangags this as well and neurontin, baclofen and other meds for me, basically am MS patient for him and is aware of lyme and luckily has some lyme knowlegde

on with pain doc now too..just began methadone and still in way too much pain for any one person to be expected to go through, funny as i used to be a rockstar of pain or intractable symptoms management on our team, go figure.

makes it worse since i have good understanding of pain , pathways, receptors, etc and haywire brain messing things up worse

ADD too, so back to ur question, cymblata very good for neuropathic pain, look up neuro pain and see if that is what you are having. NO amount of opiod based meds work effectivly on neruo pain.

different pains need diff types of tx. look up neuro pain, muscle pain, vasular, etc. have and understanding of what is going on with your body causing pain.

pain itself is a signal to us to let us know something is wrong, pain is a way for the body to say, hey there, this needs attention (broken arm= very obvious pain to arm)

do you have studies supportin neuro pain (ex: i have disc problems, nerves pinched, and annular tear in lower lumbar and prob at multiple cervical as well)

hope this helps

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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jtavares76
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MY3Boys...I do actually have DDD in my lumbar and an annular tear as well...This may explain why other narcotics don't even touch my pain.

JT

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jtavares76
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Keebler...thanks for the suggestions.


I printed out Dr. B's treatment guidelines and will start taking the supplements listed once I find out if they will interact with any other meds that i am on.


I plan on picking up the Lyme Disease Solution this week...I just finished Cure Unknown. It was an excellent read.


JT

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kreynolds
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I have always had problems with these meds....

My old Pychiatrist tried pushing those meds on me along with many others that deal with the seretonin levels in the brain.

I have terrible anxiety/panic attacks as many do with Lyme and Co's.

The thing that most ordinary doctors don't know is that these meds(seretonin)given to Lyme patients may cause really bad reactions.

A person with Nuero Lyme doesn't have a normal/healthy brain. This was my problem.

I was pushed to take all these anti-depressants and got really sick from them.

The meds used on a healthy brain may be fine, but when you start messing with chemical imbalances in a "Lyme" brain it can be bad.

At least in my case it was.

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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