Anyone not on drugs for Fibro?

[cookiebaker]

there are other options out there.. might take a little digging to find them, but they are out there.

I have been revisiting cutting gluten again.. and am finding that some things are definitely a problem... mostly breads made with bleached flour.. like your standard hamburger buns, and the like.
had lunch with my friend again on Friday.. we had hamburgers on, you guessed it, white buns... yeah.. that did not go real well for me... by the time i got home i was severely bloated.. wont be doing that again.

 

[Zahnj]

Thanks to all of you - I don't expect to be pain free either from the Fibro or the spinal issues I have had for the last 20 years (really 45 years) but I do wonder if the drugs I'm on are contributing to my worsening health. It is encouraging to see some of you do manage with less or no medications at all. Having a positive attitude is something I have to work on - my body goes into extreme reactions to stress and I need to work on that for sure.

I've been off gluten for a few years. I hope I can get off some of these drugs in the next while. I may find I feel much worse without them, but I want to see if I can at least reduce the number of prescriptions I'm on. I belong to a couple of online groups and know from experience that its vital to taper safely from all drugs. I've been trying to get off Cymbalta for years - it has terrible side effects, and its terrible to come off of.

Hi and welcome,

I take mental health medications: Celexa, Effexor and Trazodone. I will say Effexor an SNRI has definitely been difficult to get off of for me. I am on the lowest dose possible, and I still have the rage side effect but it's much better managed now with my talk therapist.

I use Trazodone for sleep, and Celexa is the best SSRI I've had. It was as others have said a wild crazy ride to get here. Since, I am on these medications I cannot take a lot of the Fibro meds.

I could take Gabapentin but my IBS would flare so my GI doc has me off of that.

I do know some ppl like me who have to take Effexor or Cymbalta long term to stave off the withdrawal symptoms.

It's really what you can live with, and how your body handles it.

For me ice baths, Arnica supplement from Ollois, and pool therapy have really helped me.

I am trying Voltaren and I'd like to add mysofacial release therapy as well.

I also have my gall bladder removed. So, with my IBS, I need to stay away from spicy and fatty foods. The healthier I eat the better I feel. I have found no difference between gluten/dairy diets, personally. Oat "milk" does settle my stomach better though. But after a PT a banana and chocolate reg milk do help me with pain afterwards.

I'm sorry there's not a cut and dry response for this. Keep in touch throughout your journey

 

[vickythecat]

Hi,
Living with fibromyalgia for 25 years, 20's, 30's made it through with occasional pain killer, lots of PT, lots of rest - but it was a time when I had trouble accepting my diagnosis so I'd push my body, then burn out, then hit rock bottom, but then try again and again.

For the past 9 years, I was on tramadol, low dose of 100mg and I went through withdrawal this year. I was taking it for nerve issues (failed neck surgery, later shoulder dislocation and hospital mistakes), the withdrawal was quite bad and took weeks, almost 2 months to fully be out of that weird shaky dark world. I've been on basic OTC meds plus muscle relaxants ever since. That was 4 months ago, do I miss tramadol? I kinda do, at times, but the withdrawal is simply not worth it.

I'm hoping to go back to the doctors and see whether they have any new medication recommendations. In the past I've been on the classic fibro meds and they only worked at the highest doses but the side effects were not worth it. I think mentally and physically an antidepressant might work (please Placebo, make something work!) - anxiety and sleep problems are currently making everything worse. And muscle relaxants might help, no idea.

And of course like everyone else says, eating a healthy diet (low fat whole food plant based works best for me), staying as active as possible, listening to your body, taking the right supplements (I don't do anything fancy, just b12, vitamin d, and the occasional iron, magnesium for sleep and omega 3. I'm too broke to try the fancier ones! Plus my blood work comes back fine every time) ...

So overall best medication is really acceptance. Accepting the loneliness that comes with chronic illness, the feeling of missing out on life, seeing everyone else 'live their life' but then finding beauty in the tiniest of things - from a rainy day to a cup of tea to a good tv show to a day full of day dreaming or watching YouTube videos traveling the world.
Wish you the best!!!

 

[JayCS]

(please Placebo, make something work!

Yeah, getcha.... Looking at the placebo effect in fibromyalgia med studies it's interesting to see how high it actually it is. Or perhaps we can say how little better the meds are...

The meta-analysis Placebo effect in pharmacological management of fibromyalgia: a meta-analysis from 2021 found: "The administration of placebo has proved to be more effective than no treatment in many clinical settings and evidence supports the 'therapeutic' effects of placebo on a wide range of symptoms. The placebo effect is believed to impact the clinical outcomes, but its actual magnitude is controversial. Drug treatment resulted to be more effective than placebo administration for the management of fibromyalgia. Nevertheless, placebo showed a beneficial effect in patients with fibromyalgia. Treatment-related adverse events occurred more frequently in the drug treatment."

 

[longtimer]

First off - Thank You to everyone who has posted here. Your honesty and your experience is so appreciated. Fibro is such a complicated condition and we all come to it for different reasons - though stress seems to be the biggest factor.

Since I first posted my question, I've stopped taking my breakthrough med Tramacet. I never took the prescribe amount of up to 8 a day, on bad days I'd take 4, on so-so days I took 2. But after reading about the side effects and realizing that many of my symptoms could be made worse by the drug I went off it. I was "sick" for a couple of days but it wasn't too bad. And though I still have pain, I feel better overall. Whether I can attribute it to going off Tramacet, or the change in my diet (an anti inflammatory diet) or the increase of supplements (thanks to research) or being kinder to myself - I don't know.

I am still on Tramadol once a day and I know that will be a hard one to come off. Just going off coffee was a tough run! I am interested to see though, if I can manage without the Tramadol too. Opioids can cause heart and breathing issues, as well as other serious things besides addiction, and I've had breathing problems for at least a year, and my doctor is concerned for my heart. I am still on Cymbalta and I'm not happy about that as there are some really funky side effects from that. Every drug has side effects.

I have been reading Dr. Teitelbaum's book about Fibro - and though he is pushing his own products, he does have sound advice for doctors and sufferers. (I first watched a youtube video presentation he gave at a medical convention that Jemima cited. Then I got his book.)

 

[JayCS]

I have been reading Dr. Teitelbaum's book about Fibro - and though he is pushing his own products, he does have sound advice for doctors and sufferers. (I first watched a youtube video presentation he gave at a medical convention that Jemima cited. Then I got his book.)

Yeah, that's a few things I was thinking about writing on the thread today with @cookiebaker about D-ribose (his pushing, sound advice and @Jemima's interest in him). It's interesting that whilst he still has videos on youtube, details of his supp recommendations were taken down on 1-2 sites, however these also generally took down their supp recommendations, saying the FDA had said either their products or their info, not both. Which surprises me, because how many sites is there that still do both? Or is that then not their own products? But maybe that's also been his fate. However I don't like his products, cos they're combination and not pure, so I'd rather he'D . I archived a big list of his from a Spanish site, but with 283 meds / supps it's bulky, more of a reference brochure.

 

[sunkacola]

@longtimer , congratulations on going off some of the drugs! And I cheer you also for your intention to go off tramadol. The sooner you do that the better, although cold turkey is not, of course, recommended. Let us know how it goes and we will be here to support you.

 

[cookiebaker]

I have been reading Dr. Teitelbaum's book about Fibro - and though he is pushing his own products, he does have sound advice for doctors and sufferers. (I first watched a youtube video presentation he gave at a medical convention that Jemima cited. Then I got his book.)

eah, that's a few things I was thinking about writing on the thread today with @cookiebaker about D-ribose

I guess I am just jaded and distrusting of "doctors" that feel they have to "create & push" their own line of supplements when there are already so many options out there.
Writing books is one thing - I kind of equate that with writing papers... but written in a manner that lay people can understand.... but the pushing of their own line of product just says money hungry to me.
We dont need yet another "brand" of supplement X when there are about 20-30 other options out there already.... Good advice about the ones that are out there would be far more appreciated. Things to look for, things to stay away from (ingredient wise), best time and way to take something... most supplements just say take x tablets/capsules x times a day.. maybe occasionally it will say either with a meal, or on an empty stomach.. but that is about it.
Should i take it in the morning? or would evening be better? maybe bedtime? Before a meal? after a meal? during the meal? These are all questions i have in regards to taking supplements.

I walked into a "health" store near me today.. 1st time ever in this particular place... asked about GABA products...
they had like 10 different variations on the shelf.. now.. which one should i buy?? they had liquid, sublingual tablets, capsules.. and different brands of each.. at different strengths (xxx mg/serv)
I had purchased a bottle of 750mg capsules last week, thinking I could just open the capsules and take a smaller dosage under the tongue as I was not sure about starting at 750mg.... yeah, that did not go well.. totally disgusting taste in the mouth.. those will get set aside for now..

I ended up buying a sublingual tablet at 100mg ea. Remember, I am still coping with the withdrawal symptoms - mostly down to the "brain zaps (w/sound effects)" at this time.. Had read somewhere (possibly Trudy's site, maybe somewhere else) that GABA can help with those symptoms.. Took 1 tab at about 1pm... waited about 30 mins.. did not really notice any difference, so took another.. hmm... zaps are slightly diminished... have since taken another and so far, doing ok... (up to 300mg now) No niacin type flushing as yet, so that is good.
I wont say they taste "good" but they do taste far better than what came out of the plain capsules, LOL (does have "natural cherry flavor" and "stevia leaf") and dissolve very quickly in the mouth.

I will be very happy when the brain zaps go away completely.. makes driving a bit of a challenge... and I kind of need to be able to drive.

 

[longtimer]

I think Teitelbaum is writing from an honest place - his primary intent is to simplify supplements for those suffering from Fibro (though I don't like the constant "ads" for his products).

There are a lot of supplements available to treat yourself with and if you aren't familiar with them or don't know how to find them, the book is very useful - my husband does a lot of research for me and most of the supplements he's suggested to me are recommended on this board, and in Teitelbaum's book.

I found it interesting in the book that he says Lyrica and Cymbalta are the two top rated drugs for Fibro. I hate taking Cymbalta, and when I tried Lyrica I felt so heavily drugged I stopped after 3 days... Maybe once I'm off the Tramadol the Cymbalta won't make me feel so bad... I think there are a lot of interactions between prescription drugs that aren't fully researched. Its also that I'm at a point in my life where I can take the time and efforts to better take care of myself. The last 20 years were awful for me - caring for everyone else, and having incredible stress from forces I couldn't control along with my chronic pain. I'm now all about getting my life back with anything that will work for me.

 

[JayCS]

Good advice about the ones that are out there would be far more appreciated.

As said, Teitelbaum has a good track record for that. However for GABA I can't find any recommendations of his on the big list I mentioned. Interesting for me is this article he shared: "Insomnia Associated with Low Levels of the GABA". But also "Is it OK to take the mutlivitamin powder & D-ribose at the same time as GABA?" on his vitality101, his answer is "These are all compatible and can be taken together, though I would take the transfer factor by itself at least 1-2 hours away from food or other supplements and the vitamin powder. L&B, Dr T" then "What is the best way to treat low GABA?" "Depends on the associated symptoms, as the tests themselves are not (IMHO) very accurate. Can begin by simply taking GABA 500-1000 mg 1-2 x day. L&B, Dr. T". Fair enough, even tho I much prefer Trudy's expertise...
Now 🛌 after a 16' break incl. cold shower #3 and 3rd 400mg GABA... 😊

 

[JayCS]

Jumping back here for another Teitelbaum supp info... if you like it nice 'n' simple find attached or search bioenergylifescience 5_My-Essentials-by-J-Teitelbaum_Remedies-for-Life-Feb-2012_0.

1. Ribose 2. vitamin powder 3. Fresh juice 4. curcumin + boswellia + natto 5. dark chocolate
6. coconut water. 7. stevia 8. fish oil. 9. his 6 sleep herbs.

 

[cookiebaker]

5. dark chocolate

OOooo... have to say.. I like this one.. a LOT,

 

[JayCS]

OOooo... have to say.. I like this one.. a LOT,

Well... I couldn't (cnt'd) believe that when he joked about it with the audience in a youtube talk. He didn't even say dark there. And I did read up that even milk chocolate decreases stroke likelihood in men. Which sounds great for us chocolate lovers....
However the sugar remains a problem, esp. for my lipids 😿 So if he meant eating whole bars of 'normal' 50% sorts of dark chocolate that'd still be a lot of sugar ... But actually he also talks about the danger of sugar addiction ("4 types") and he himself uses chocolate without sugar. Not sure if that means the 99-100% cocoa sorts (no fun 😬) or the sort I like best 85% with no added sugar, but blueberries, dates and hemp seed, sugar = 16% - better than the 70-72% sorts, with added sugar - altogether 28-29%... Also I keep it down to 1-2 oz and not every day.

 

[longtimer]

I think I read him say dark chocolate, one piece of 70% (one square not a bar) a day...

 

[Cutiegirl]

Hi. How did you make out with the organic pasta?