Medication for Fibromyalgia

[JamieMarc]

Thank you for your reply. Agreed, and my practitioner pretty much said as much as you did regarding the increasing tolerance levels over time. Thus, as you essentially stated, I am taking it only as needed and not at all on my better days. The tramadol is only one part of a multifaceted approach to my fibro.

 

[sharonsunny]

take it daily

 

[sunkacola]

take it daily

@sharonsunny -- it is very unwise to take an opiate daily. JamieMarc clearly knows that and is not doing that. It is
preferred that members not advise others to take opiates daily, as it is known how harmful they are.

Additionally, on this forum we acknowledge that we are all different and we don't tell each other what to do. It is more helpful to speak from your own experience, saying what works for you.
Thanks.

 

[fimi]

I may be wrong @sharonsunny, but I think you mean you take it daily rather than instructing us to take it daily!!
Which may have caused a tad of confusion here??
If so, I got ya! If not, then I didn't!!

 

[JayCS]

I think you mean you take it daily rather than instructing us to take it daily!!

Oh, and I was on a completely different route, I thought it meant: decide from day to day....
And actually, embarrassingly :-}, I didn't even look at the thread, and didn't realize it was referring to meds!
Silly me... . So I've taken my "like" back...
Good of @sunkacola to make sure and try to clarify!

 

[JamieMarc]

Just as so many others here, I also want to emphasize the importance of getting outdoors. I have been a nature lover all of my life. I love cycling and riding around the trails in the forests. Or along the beach. While I am out, I also enjoy taking photographs of nature. If you are not a nature lover, it's not too late to start. The fresh air, the sunshine, the cool breeze, the scents of nature, the sounds of animals or the surf... All of it is incredibly relaxing and uplifting. And I can forget about, or be distracted from, my pain when I'm outdoors among nature. Nature is an incredible healer. I just wanted to add my two cents and my thumbs up on this topic.
Socializing is another very important aspect of my healing regimen. Generally, I don't enjoy the company of people, but I do love the companionship of my dear friends, my family, a caring neighbor or even a kindly store clerk.
And it's also important for me to know when to stop and take a break. I know my pain better than anyone, as each of us do, so I am aware of when I need to say to myself, "Stop right now, Jamie, and give yourself a break. Allow your body to calm down and ease itself."
As I mentioned in my post above, medication is just one small part of my overall strategy to deal with my fibro. For me, there is never just a single solution, but rather a lifestyle change or strategy. Each of us is different, our pain is different. I guarantee no two cases are alike, just as no single solution works for all. That is why we are here: to learn from one another and uplift our fellow sufferers.

 

[fimi]

take it daily

...Just wanted to add that I will leave my "like" for you @sharonsunny, as although Tramadol is not my preference either, I do respect it's your way of getting through the fibro. But I do hope you find better ways of helping yourself soon sharonsunny, as I know it's not easy.

And anyway...we all need as many smiles as we can get with fibro.

 

[Zahnj]

Thank you so much for getting back to me!

The doctor nayed the other medications you listed due to contraindications on my other medications.

I'm newer to the Fibro game. I finally got diagnosed last year, so I wasn't sure if I was overlooking a medication that had been helpful for others.

 

[Zahnj]

I have never heard of a "rebound effect" from CBD oil, and I doubt that is what you experienced, although of course I don't know everything! But a very good thing to remember, especially for us fibromites, is that correlation is not causation.

CBD is not a medication as such, and usually doesn't cause side effects, except that some people get too relaxed and feel tired or things like that. Probably you just had a flare day and it would have happened no matter what you had done the day before. If the CBD helped you the day you took it, try again to see what the effect is. Of course if you get the exact same effect, then it would be reasonable not to want to try it again. In order to find what really works or does not for you, everything that you try needs to be approached with an open mind and a willingness to experiment, and without drawing any conclusions without sufficient investigation.
Best of luck!

Has anyone had any success with CBD oil. I tried it once and it helped but the next day I was in agony and I am wondering if there is a rebound effect with CBD oil.

I take the oral from Terry Naturally I've been on it a month now, and I don't notice a difference.

I have however heard of Lord Jones' CBD lotion that had good reviews. It's out of my price range at the moment. But if oral doesn't suit maybe that'll be easier for you.

 

[cookiebaker]

I was tried on gabapentin for a while, and it honestly did not do much for me - and the side effects were enough that I asked to be taken off of it. we tried Nortriptyline, but that gave me tremors... as in could barely keep food on a fork to eat.
My physical med Doc would really like me to try the LDN (low dose naltrexone) but because of my current financial situation, and it not being covered by insurance, I just cant afford to right now.. (no income at all - if it weren't for my long time partner, i would be in very dire straights)

at this time, i am not taking any meds for the fibro.. but i am on an anti-anxiety/anti-depressant (sertraline) and inhalers for my COPD...
also taking other meds for the kidney stone removal.. but those wont be long term.

In all honesty, i am not really a big fan of pills for every little thing... i even have a hard time taking supplements for long.. (i have problems swallowing larger pills) so I take things one day at a time, one minute at a time... sometimes even just one second at a time.. on good days i try to do a few small things, on bad days, i just want to curl up and hide...

 

[nanadebbie]

Have you tried not eating any gluten. I tried this on my own, within few days could feel difference in my joints.

 

[Zahnj]

This is a link to my post about a big recent comparison between amitriptyline, pregabalin (aka pre gabs ;-P), duloxetine and milnacipran. No word lost about gabapentin, so I'll now check for studies comparing it with pregabalin, since that was developed as an improvement of gabapentin...
Now I'm mind-blown : It's not possible to compare pregabalin to its precursor gabapentin, as there is NO real evidence for gabapentin helping fibromyalgia at all
I always thought gabapentin never got an FDA-approval just because pregabalin was later, but turns out gabapentin has no evidence for FM, but has been hyped by the industry, and unknowing docs are now frantically = wrongly using it even more all the same, as an alternative to opioids - that's what several recent reviews are saying.

Only one (much earlier) study (Lloyd et al 2012, 682 patients) said:
"At 1 year, pregabalin was cost saving and more effective than placebo, duloxetine, tramadol, milnacipran, and gabapentin. Compared with amitriptyline, pregabalin was not cost-effective at both dosages".

If anyone's ever heard of mirogabalin as next in line, but "in infancy": first results 2019/2020 are disappointing.

Thank you @JayCS for providing this for the others!!!

I did try Gabapentin anyways, because the docs wanted me to, and I'm trying to stay in good standing. It's a mind game with docs, I swear.

I want get too into it, but basically even on the low dose my IBS reacted terribly. My GI doc took me off of it.

I work with the medical doctors, because 1. I'm trying to get on disability. 2. Since I'm dependent on finances with family seeing the doctors, and following their recs are part of our agreement. 3. I need insurance to cover things such as pool therapy, and a pain doc is my only way in.

My grandma visited, she has RA, and she took this Arnica supplement from Ollois. You can get it at Target. It worked for me!

For me, gluten and dairy restrictive diets did not alter my symptoms. Turmeric and oral CBDs also did not work.

Really appreciate a place we can all safely talk about our journeys. Love and hugs JZ

 

[JayCS]

I did try Gabapentin anyways, because the docs wanted me to
even on the low dose my IBS reacted terribly. My GI doc took me off of it.

Oh dear - but it's always a gamble isn't it... even supps are, just with considerably better odds in my experience.

The fact that gabapentin/Neurontin hasn't been tested for fibro doesn't to me mean that it's useless, esp. cos it is proven to help pain generally and does help some.
But what I "don't understand" is that despite that medical evidence some people are given it as a first or only choice, instead of trying FDA-approved pregabalin/Lyrica, duloxetine/Cymbalta and the at least equally well proven amitriptyline first.

And interesting is that the category "FDA-approved" doesn't mean that much, theoretically and practically, as milnacipran is 3rd one, not amitriptyline, whilst that has more evidence and is also used much more for fibro.

And nortriptyline/Pamelor not being offered much either I've heard again was the price. Drugs com confirms it's a bit more expensive (twice as expensive per unit), but that's still only half of pregabalin and gabapentin.
Cookiebaker's experience above is negative, but as amitriptyline is converted into nortriptyline in the liver it is generally thought to have less side effects than that. (Did you try amitriptyline too, @cookiebaker?)

I work with the medical doctors, because 1. I'm trying to get on disability. 2. Since I'm dependent on finances with family seeing the doctors, and following their recs are part of our agreement. 3. I need insurance to cover things such as pool therapy, and a pain doc is my only way in.

3 extremely good reasons and I used docs for all three as well.
Well for #2 let's say I felt obliged to my employer and my wife to do doc things even if I didn't think they were right for me.
In my case it turned out 1. what docs said actually didn't help with any of my 3 kinds of disability (that may well be different here or in my case), 2. after docs only harmed me no one pressured me to continue and instead encouraged my much more successful non-med route and 3. I did put hope in pain docs getting me MMJ, but after CBD oil zombified me, I didn't feel that was the right route anyway. For PT I only need my GP, but I've collected 4 docs (GP, cardio, sleep lab, allergist) who'll get me most things I ask for, like acupuncture. Yet to ask my cardio or sleep lab ps. for L D N, cos my GP is scared to, but I've got enough new supps in the pipeline anyway, just increasing to 35 and more.
Comparing your position and my position then and now I'd definitely do what you're doing, as it doesn't seem to be harming you. But if it were, or started to, I'd make sure my family and docs know and accept that and if it were possible switch the docs for pool therapy etc.
Hang in there!

 

[JayCS]

BTW, nortriptyline has been proven similarly good to amitriptyline a few times.

A list of the other meds that work for some:

"Medications with the best efficacy in the treatment of FM include the tricyclic antidepressants amitriptyline and nortriptyline, cyclobenzaprine (a skeletal muscle relaxant), tramadol, duloxetine, milnacipran, pregabalin and gabapentin. Corticosteroids, nonsteroidal anti-inflammatory drugs, benzodiazepines and opioid analgesics, with the exception of tramadol, are not considered efficacious. Medication selection should be individualized and influenced by the severity of illness and the presence of comorbidities and functional disabilities." (Fibromyalgia: disease synopsis, medication cost effectiveness and economic burden, a 2014 review in "Pharmacoeconomics" by Tracy Skaer, professor at WSU).

A similar list to above, but minus tramadol and plus citalopram, fluoxetine, paroxetine & cyclobenzaprine (Drug Class Review: Drugs for Fibromyalgia: Final Original Report, 2011)

 

[JayCS]

This article from 2020 Current and Emerging Pharmacotherapy for Fibromyalgia
doesn't mention nortriptyline, can't see why, and mentions
Reboxetine (only case reports) Esreboxetine (1 trial) Nal trexone (1 trial; if depression) (1 trial) Nabilone, Dronabinol & Memantine (all with conflicting results) Ketamine (1 trial) and the newcomer is...... "NYX-2925" (works in rats).
That's where pharma research is going...

Much more interesting I found the last bit, the conclusion and expert opinion. Saying: there has been great progress in inflammatory and autoimmune disorders, but CNS conditions like fibro are baffling everyone, so experts are going to have to network. They don't think it's likely that there will be much progress in the med types currently used. One hope is to sort and treat patients based on their individual genetic (and pharmacogenetic) characteristics, plus analysis of the pathways bits of the brain connect to one another (connectivity). Another, associated to this connectivity is how the endocannabinoid system works, which is much researched now, and will help develop meds with precisely measured quantities of cannabinoid agents such as THC and CBD(!) Understanding neuroinflammation may also help (see na ltrexone, which is in L D N). Lastly they stress that managing FMS most definitely will always be more than meds, namely tools "ranging from exercise to neurofeedback and all that lie in between. Thus is the art of treating FMS." Yeah.