Combining Drugs May Work Better in Fibromyalgia

[Katharina]

I've been on Lyrica and Cymbalta since 2006. The combination reduced my symptoms so that I was able to continue to work a very demanding job for six more years. Without those meds, I would have had to stop working in 2006. I'm thankful for those additional years of a "normal" life.

Even with the meds, I had to stop working in 2012 and have been on full disability since then. I wish there were meds that actually treated fibro. With the meds we have, I think the best we can expect is to delay the inevitable, and that benefit only works for a small percentage of us.

 

[Tygermoon]

I started on a combo of Lyrica and Cymbalta. I went off the Lyrica because of excessive weight gain. I changed to gabapentin, and I lost some weight, and then my weight stabilized. But I'm afraid to stop the duloxetine, because of the nasty withdrawal_syndrome. However, right now, the combo is working for me. I also take a lot of Vitamin D3 and magnesium, and a probiotic to help with IBS symptoms. By "working for me" I mean, that my pain is limited to 5-7 most days, and sleep a bit better. But, everyone's reaction to meds is different, and we, and the pharmacy companies need to remember that about Fibromyalgia patients.

 

[Kat]

What kind of magnesium do you use?

Currently using Jamieson brand High Potency Magnesium 500 mg, twice a day; it contains 500 mg of magnesium aspartate, glycerophosphate, malate, oxide, and glycinate (doesn't say how much of each) and 500 IU VitD3

Also try to take Webber Naturals high absorption 150 mg magnesium citrate once a day, but i don't always remember to take my afternoon supplements. Sometimes i can tell i missed that 150 mg, other days skipping it doesn't make a noticeable difference.

all this magnesium definitely makes my stools soft but that's a small price to pay to not be twitching all the time!

 

[Cwren58]

Definitely try LDN - check out that resource page and some of the LDN sites. Two studies have shown that it can work in FM (no guarantees of course) and a study is underway in ME/CFS.

Medical marijuana is another good option.

I emailed a compounding pharmacy that is in a town not far from me--I'm in rural South Carolina so it is amazing that there is such a thing close by. Nothing is out here! Anyhow they have compounded different strengths of it before--the price is by the amount used. $45 for a higher dose than I would need.

I see pain dr. friday so I will ask about that.

As for marijuana-- thats a big step for me not sure I'd want it, certainly not if it is not legal. It is not legal here they are discussing a bill to allow possession of 2 ounces of medical marijuana. although my pain dr seems pretty interested in alternatives--he once advised me to use turmeric--which maybe I didn't take high enough dose but after 6 mos I didn't notice any benefit-I may revisit that at a higher dose. Very interested in herbal meds-- marijuana is an herb... so maybe.

 

[Cort]

I started on a combo of Lyrica and Cymbalta. I went off the Lyrica because of excessive weight gain. I changed to gabapentin, and I lost some weight, and then my weight stabilized. But I'm afraid to stop the duloxetine, because of the nasty withdrawal_syndrome. However, right now, the combo is working for me. I also take a lot of Vitamin D3 and magnesium, and a probiotic to help with IBS symptoms. By "working for me" I mean, that my pain is limited to 5-7 most days, and sleep a bit better. But, everyone's reaction to meds is different, and we, and the pharmacy companies need to remember that about Fibromyalgia patients.

Glad to hear that some people are benefitting.

 

[Cort]

I emailed a compounding pharmacy that is in a town not far from me--I'm in rural South Carolina so it is amazing that there is such a thing close by. Nothing is out here! Anyhow they have compounded different strengths of it before--the price is by the amount used. $45 for a higher dose than I would need.

I see pain dr. friday so I will ask about that.

As for marijuana-- thats a big step for me not sure I'd want it, certainly not if it is not legal. It is not legal here they are discussing a bill to allow possession of 2 ounces of medical marijuana. although my pain dr seems pretty interested in alternatives--he once advised me to use turmeric--which maybe I didn't take high enough dose but after 6 mos I didn't notice any benefit-I may revisit that at a higher dose. Very interested in herbal meds-- marijuana is an herb... so maybe.

I wonder if you can get non THC cannabis oil in S.C.? That's really helpful for some people.

 

[Cort]

Currently using Jamieson brand High Potency Magnesium 500 mg, twice a day; it contains 500 mg of magnesium aspartate, glycerophosphate, malate, oxide, and glycinate (doesn't say how much of each) and 500 IU VitD3

Also try to take Webber Naturals high absorption 150 mg magnesium citrate once a day, but i don't always remember to take my afternoon supplements. Sometimes i can tell i missed that 150 mg, other days skipping it doesn't make a noticeable difference.

all this magnesium definitely makes my stools soft but that's a small price to pay to not be twitching all the time!

Thanks!

 

[wattysan]

Cymbalta kicked off the crash that has taken me out for nearly a decade.

It did help pain but also made me unable to do anything but stare at the wall. I felt dead inside. And when the dose started to wear off, it felt like someone had dipped me in gasoline and lit a match.

It also has severe sexual side effects, even at low doses.

I would not wish this drug on my worst enemy. Well, maybe.

Hi-
My name is Robin. I'm newish here although I was diagnosed with FM 4 yrs ago.
I recently came off Cymbalta and went on Celexa and Wellbutrin. I cannot believe the difference! I REALLY thought I was going completely crazy. I was suicidal. I kept having episodes of unreality. It was HORRIBLE.
I am awake and feeling like a different person now. It hasn't done much for the pain but at least I can tell you where it hurts!

 

[wattysan]

Cymbalta kicked off the crash that has taken me out for nearly a decade.

It did help pain but also made me unable to do anything but stare at the wall. I felt dead inside. And when the dose started to wear off, it felt like someone had dipped me in gasoline and lit a match.

It also has severe sexual side effects, even at low doses.

I would not wish this drug on my worst enemy. Well, maybe.

OMG! Right?

 

[J William M Tweedie]

I feel like most of you, I presume, that I'm in an unsolvable maze and Jack Nickolson is closing in with the hatchet!
2 factors about which one doesn't hear that much are:
1. for men obviously - hormone levels -low testosterone. 2 years ago I went through a regimen of self injecting .5mg weekly to bring my level up to 26+-. 1 month ago with my new and terrific Dr I felt that I needed a recheck and low and behold my level was back to 4. My Dr was surprised and put me back on the regime again 3 weeks ago. I don't know if estrogen levels equate.
2. low functioning thyroid, known as sub-laboratory hypothyroid or Wilson’s Temperature Syndrome. My new ND had me take my temperature every 3 hours after waking 'til bedtime for 3 days. Amazingly I hit the normal 37 (98.6?) degrees only 3 or 4 times, otherwise it was 36.1 - 36.8 the low numbers mainly in the morning.
Both the hormone and the thyroid account for a high percentage of the energy production/level we have. I will see my ND at week's end and see what the treatment will be. It is treatable he said.
Maybe fixing these 2 abnormalities will get me out of the funk I've been in for months. If there is any change I'll report to you.
Best wishes to all - in empathy, Will

 

[Remy]

OMG! Right?

Hi-
My name is Robin. I'm newish here although I was diagnosed with FM 4 yrs ago.
I recently came off Cymbalta and went on Celexa and Wellbutrin. I cannot believe the difference! I REALLY thought I was going completely crazy. I was suicidal. I kept having episodes of unreality. It was HORRIBLE.
I am awake and feeling like a different person now. It hasn't done much for the pain but at least I can tell you where it hurts!

Welcome to the forums!

 

[Steve]

Oops, Lyrica, not Cymbalta, was the med that dis inhibited me to get confused and also go through a red light. Cymbalta gave me a sudden breathing problem like a panic attack, never had before or since.

Cwren, marijuana is a potent drug, this coming from a 60's Boomer. It's not your grandmother's drug anymore. I've had three really awful OD's on edibles, two commercial and one mine, where I knew I wouldn't die but almost wanted to for six hours. Here in MA, recently legal med MJ, the sleazoids are actually selling largely recreational marijuana strains in the dispensaries, to the neglect of us pain people. Very hard to get pain relief with. I think CA and CO, with huge varieties available, probably also have skilled advice for pain relief seekers. MJ has a bunch of side effects never mentioned even if not smoked so go slowly. I do know some people who have gotten it to work for them. At forty bucks for a 12 hour transdermal patch that worked only mediocre and actually only lasted three hours, you also might not be able to afford much.

 

[Seasprit]

I have tried them all over the years, including naltrexone, lyrica and cymbalta- too many side affects or day time sedation, but pre-hip surgery pain had me looking for something "more" I have a genetic condition CYP450 2D6, that causes problems w/ most pain meds especially opiods. I recently tried Celebrex/celecoxib and found this to be the ONLY pain med that causes me no daytime drowsiness. Its an unusual NSAID because it works by reducing hormones that cause inflammation and pain in the body. It cannot be used in combination it w/ other NSAIDS or asprin.
Its used to treat pain or inflammation caused by many conditions, ie. arthritis, ankylosing spondylitis, menstrual pain. Since I am med sensitive, I started w/ a 50mg children's dose (used to treat juvenile arthritis) and then 100mg. at night. I'm now up to 200mg. PM but then I'm going in for hip surgery next week. I figure this is much better than the very high doses of other NSAIDS such as Acetominophen or Ibuporfen - my only drug of choice due to genome issues, but didn't quite work to cover my nighttime painl (Again, I can't use opiods that may be an option for others.)
Hope this is helpful to some out there who have not found a simple solution.

 

[Merida]

I'm going to "rain on the parade" here. Cymbalta can and does help pain. BUT........it can cause strokes. I lost 2 family members (that we feel is medicine related) with this as a consequence. Both wouldn't stop the meds because of the pain relief. And both had bad strokes that eventually took their lives. It can also potentially cause all the symptoms of POTS. Here is a drug symptom list.
www.drugs.com/sfx/cymbalta-side-effects.html
Issie

@Issie And in our support group we had 2 ER / then hospital admits for Savella 'problems.' I do not have enough info to detail the exact problems.

 

[Merida]

Oops, Lyrica, not Cymbalta, was the med that dis inhibited me to get confused and also go through a red light. Cymbalta gave me a sudden breathing problem like a panic attack, never had before or since.

Cwren, marijuana is a potent drug, this coming from a 60's Boomer. It's not your grandmother's drug anymore. I've had three really awful OD's on edibles, two commercial and one mine, where I knew I wouldn't die but almost wanted to for six hours. Here in MA, recently legal med MJ, the sleazoids are actually selling largely recreational marijuana strains in the dispensaries, to the neglect of us pain people. Very hard to get pain relief with. I think CA and CO, with huge varieties available, probably also have skilled advice for pain relief seekers. MJ has a bunch of side effects never mentioned even if not smoked so go slowly. I do know some people who have gotten it to work for them. At forty bucks for a 12 hour transdermal patch that worked only mediocre and actually only lasted three hours, you also might not be able to afford much.

@Steve
I had a similar experience on edible marijuana products - Martha Stoner's Ripped Krispies. I was up all night with nausea, dizziness. Never again!

 

[BrianH]

For me the biggest impacts on pain were:
Energy Generation: The combination of Ribose, B2, B3, CoQ10
Blood volume: A marked improvement on Fludrocortione, a bigger one still on T3 (that removed the need for Fludro). While my doctors argued that my %O2 was great they were not accounting for the low level of blood, hence I was suffering actual Ischaemia - again this would have been messing up energy generation.
Thyroid: I needed relatively high doses of T3 to feel well, depsite the NHS refusing to admit I was hypothyroid (crystal clear from the symptoms).
Magnesium: This one is hard to say - I took Mg Malate for low stomach acid as much as the Mg it's hard to know which of its actions produced benefit and it was started shortly after the energy supplements. I was following Titelbaum's plan. Having had a panel of amino acids done, it may well be that Mg Aspartate wil be the better choice for me. I have healthy Mg levels but the Asparate is a bit low and I have imablances in my Urea Cycle that could require it.

 

[ScreamingBuddha]

Good to hear . Always good to have non-drug alternatives. Anyone else doing better on them?

Yes. I had all the clinical symptoms of low magnesium. I also tested low in Vit D. Began supplementing for both and noticed less tension in muscles within 7-10 days. Mood better as well.

 

[IrisRV]

It's interesting to read so many stories of difficulties with Cymbalta. It was the only thing that gave me any relief from ME muscle aches that prevented me from sleeping. I never had any of the side effects you all mention. I did always take it at night, which might have made a difference.

I've been off it for years because I don't have that kind of constant, untouchable muscle aches anymore. I don't remember having trouble coming off it. We decided to try doing without it simply because we routinely challenge all my treatments to see if I don't need them anymore. It's never good to take more meds than you absolutely need.

Maybe this is another case of correctly or incorrectly messing with your body chemistry. People with certain neurochemical deficiencies or excesses do great on meds that correct those conditions, but other people who are depressed or whatever for other reasons, do terrible on those meds because the med messes with neurochemicals that were okay to begin with thereby screwing up their neurochemistry instead of correcting it.

Maybe Cymbalta only works on specific biochemical abnormalities causing a particular kind of pain. If your biochemistry is different, Cymbalta may mess with something that's working correctly, and not be very effective in treating was is biochemically wrong with you.

I feel some doctors often prescribe meds for pain or depression because they're told it works for those conditions without any knowledge of what's really going on biochemically either with the meds or in our bodies. Then they're not responsive enough when it looks like the med is screwing with chemistry that works instead of correcting chemistry that's wrong.

Yes. I had all the clinical symptoms of low magnesium. I also tested low in Vit D. Began supplementing for both and noticed less tension in muscles within 7-10 days. Mood better as well.

I have found the same. Mg and Vit D didn't do anything like enough in the days when I needed the Cymbalta. They didn't even touch the aches/pains, but now they do a fine job of dealing with occasional muscle aches and less-than-satisfactory mood.

 

[Paw]

It's interesting to read so many stories of difficulties with Cymbalta. It was the only thing that gave me any relief from ME muscle aches that prevented me from sleeping.

I've been taking it for several years, as it has been the only drug that minimizes the flu-like burning-under-the-skin condition that characterizes my FM. Every time I try to wean myself from it, the burning intensifies. I did manage to permanently reduce my nightly dose from 90 to 60mg -- mainly because that dosage (prescribed by my neurologist) perennially caused fights with my insurance company. I live now with somewhat more daily burning, but a bit more mental clarity and energy.

I know it's a problematic drug, and I know it can be hard to quit (I had awful brain zaps for two months after reducing my dose), but I agree with Iris that for some people it hits the bulls eye. I have a lot of other symptoms, but reducing my neurological burning increases my quality of life measurably.