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Living With Fibromyalgia - Online Support Group

Anyone not taking medications for their Fibro?

I’ve been doing lots of reading and the one thing that I keep seeing consistently, is that people with fibro must exercise. Now, that can be difficult with the pain, but I have noticed that when I force myself to get moving and do my walks in the indoor pool, I feel so much better and I actually sleep really well. I noticed these results even before I knew I had fibro, or read the articles, so there must be something to it. My other chronic condition it is imperative that we move. I started with the warm therapy pool, moved to water aerobics, and I also walk on land 2 nights a week. So far, aside from Lyrica, this has provided the greatest amount of relief.

Agreed, I do 1/2 hour of pumping small weights by following an exercise video every morning even when I get up with many pains which is ...every morning. Small pains are helped quite a bit, don't find it does anything for the neuropathic pain in my feet.

I forgot to mention in earlier response that I started taking 2000 I.U. of D3 and 200 mg of COQ10 a month ago. The D3 is to guard against D3 deficiency that is possibly associated (caused by, who knows?) FM. The COQ10, not cheap, is supposed to help neuropathic pain, had good results from five pain research (not FM) studies, but hasn't helped me so far. I'm looking into trying another less researched supplement, will report if it does miraculous things for pain.

Natalie....you're welcome. I actually have low stomach acid, so digestive enzymes and, at times, hydrochloric acid with pepsin.. with my meals(especially protein meals) helps a great deal. As we age seems stomach acid production goes down. Unfortunately, doctors right away think the symptoms are of "too much acid", such as heartburn, burping, , gas, bloating, indigestion etc. Both high and low acid causes very same type symptoms. No wonder so many get prescribed PPI's and end up worse off cause it further reduces the acid that is so needed to digest the proteins.

I also like using Bragg's ACV. As long as you clear it with your doctor, you may ask if he/she thinks digestive enzymes would be ok for you to take. I'm actually sensitive to some of those too. Doctor gave me one called Special Digestive Enzymes by Holistic Health and they have been ok so far.

You can talk to your doctor regarding low acid vs. too much acid. Here is some info on the low acid problem...it's real important to distinguish exactly which one you are dealing with...

http://scdlifestyle.com/2012/06/hypochlorhydria-3-common-signs-of-low-stomach-acid/

The first time a doctor said to me "you have low stomach acid" I said "huh"?? I've been treated with antacids and PPI's in the past. He said "that's why you got worse instead of better." It was really bad and I couldn't even digest my meat anymore, always bloated and just miserable. So, glad it got figured out.

Ally

GrumpyCat....we need oxygen and exercise does help with that via increased blood flow. Even deep breathing on days that you can't exercise seems to help.

Ally

Hi

Th is for the deep breathing tip. Not usually something I would do, but if I have a bad day, I will definitely keep that in mind. Makes sense, especially when you look at the cause.

GrumpyCat,

You're welcome. I'm embarrassed to say that several doctors had to remind me to breathe. Honestly, we sometimes overlook the most obvious. It makes me laugh that I actually put a sticky note up that says 'breath." :')

Ally

Hi Gina,

I am so sorry to hear about all your tribulations. I do not take any medications for Fibro. I have Adderall for my ADD, but I take it as needed. That means I really don't take it on the weekends or if I'm not working. But on those days I have to focus for work I will take it. I take a low dose and that's usually enough. I also have a Rx for Vicodin for my migraines. But again I usually take this only when I absolutely need it. I usually try all my natural methods for fighting my migraines and headaches first, and if nothing works then I'll break down and take the Vicodin. But other than that, I don't take any Rx drugs. I treat my Fibro holistically and naturopathically. I usually try to post my approaches to fighting fibro on my blog (fightfibronaturally.com). So, you can always stop by there and say hi. But, just so you know, I use Curamin by TerryNaturally for inflammation and hence pain, I take a Vit C, Magnesium, B12, and CoQ10. Many fibro folks I know also take Vit D, but I cannot because of my kidneys (that's another story), but I've heard that helps too.

I hope that helps you. Gentle Hugs!

1 Like

Hi Gina:

I haven't been taking any medication other than the occasional trazadone for sleeping, and Aleve. I have never found daily medication to help my symptoms or the side effects from the drugs have been so bad it isn't worth taking. I have been managing symptoms over the last several years through alternative care.

http://dancingintherain-always.blogspot.com/p/natural-remedies.html

http://dancingintherain-always.blogspot.com/2013/11/peppermint-oil-for-migraine-stomach.html

These links will take you to my new blog, where I've been putting down my thoughts and research about CFS, Fibro, and Costo. You may find some of the information helpful.

Hoping you find this a restful day,

DancingInTheRain.Always

Have you going to a Rhumatologist? I take a lot of other meds and also take Tramadol, but a higher dose. Have you tried Lyrica or Gabapentin for pain?

Hi Catty,

Thanks for your responses. I did go to a Rheumatologist once, and ranked one of the best in my area. He prescribed trazadone for sleep. I haven't filled the script yet. I usually take a low dose of Klonopin if I am too wired to sleep well. I have tried Lyrica and it gave me far to many awful side effects. I take Zoloft for anxiety, which has definitely helped in my recovery, which began about a year and a half ago. My main problem is just the horrible muscle pain. I am going to start swimming regularly to see if that helps. I also just ordered some Curcumin to try for pain relief. I will just keep trying things until my pain is gone! I am determined to overcome this. Thanks again for your feedback.

Blessings,

Natalie

Hi Gina, Just a word of caution about going of your medications. Make sure you do it under your doctor's care and let he/she know it you are experiencing any significant withdrawal symptoms.

Regarding your question I have a PCP who does not deal with pain management and also doesn't deal with narcotics. So I was told by one of my previous doctors to take magnesium. I increased it until the stool becomes loose than stay at that same dose. It has helped me a lot and I haven't had any side effects from it. You might want to ask your doctor about this.

You might also want to ask other members of the support group what they do if they're not on medications.

Like many rare conditions, it is hard to find just the right medications for you, but they are out there. If what you are on isn’t working, then It is time to work with out something else with your doc. Don’t discontinue your drugs without talking to your doc first, but you should be able to do just that once you speak to them. I have psoriatic arthritis too, and it took me years to get the right med combo. Talk about patience. But, I am glad I was persistent because I am able to work, and live my life, mostly. With PsA, I can’t expect perfection, but my life is much better than what it was.

Bottom line, don’t give up on finding there right treatment for you.

Hi Gina,

I replied a few months back but just got an update here. My back and neuropathic type foot and leg pain got so bad that, after 25 years, I just saw a nationally known specialist near Boston. He suggested Cymbalta, despite my concerns about what are called anticholinergic effects, tough on older men like me. My pcp followed his suggestion and I noticed a fair pain reduction even overnite. However… Five days later I got quite severe side effects and stopped. I even opened the capsule and took one 1/2 strength, 10 mg, but still got severe urinary problems, the older male problem with many meds. So I’m back to nasty pain and my generic Ambien, though I will start researching and trying supplements again I will probably end up with getting low dose naltrexone, LDN, also mentioned here by someone. I believe this is a low risk potential high reward for many of us, though a pesky prescription to track down and get prescribed, though doable by phone. Good luck with your med search. Will post any positive find.

Yes, we do often look normal, like with many nasty disorders, but the best term I’ve heard for fibro pain is excruciating.

I only use specific strains of cannabis but no pills (except natural stuff like turmeric,…)
I also take Countrylife Coenzyme B-complex caps (with high vit B6, it helps with the pain because fibromyalgia is actually spasmophilia and it’s nerves that constantly vibrate without control. My neurologist says i’m walking a marathon every night with all my muscles (when i’m sleeping, that way i don’t get deep sleep stage 4)
I also get vitamin injections with B1-B6-B12 and pure B12
For sleep best and immediate results from earthing (i use a mat and not something with silver, best 50€ ever spent for sleep, and other spoonies respond the same, so i definitely would try it out if i were you. I have this and lay it under my sheets at knee height so i’m constantly in contact with the mat (https://www.earthingnederland.nl/aardingsmatxl)
And food, no more sugar or processed foods

I’m on 5htp and mild codiene 8mg for pain when I need it. I was on sertraline but managed to come off it. I swear by stretching, walking and Physio in pool. I’ve a lot of pain lately. I notice if I can manage to get up and stretch a bit I can get going. Hands and feet really bad at min, so orthotic central for feet

I was diagnosed 10 years ago and I’m currently only taking tramadol. 50mgs 3-4 times a day. CBD oil works great for me. The prescriptions for fibro just made me feel worse in different ways.

Also I take a lot of supplements. Multivitamin, Bcomplex, B12, two there’s of magnesium, 5-htp, D3. Valerian root.

I take medication for my arthritis but not fibro. My rheumatologist did suggest anti depressants but wasn’t keen to put me on them in case I gained weight, and put more pressure on my joints. At the moment I take co codamol when needed and take lits of hot baths! I find exercise does actually help… when I don’t feel too exhausted or in pain to get the gym or the pool!

I have been diagnosed in 2011 …after the initial trials and it’s side effects, I stopped meds…I rely on massages and supplements. Although I must admit that when I quit working and took life more easy, the intensity of my pain reduced significantly. I know it’s not an option for most but for me it’s the one thing that helped enormously I used to have weeks of not being able to get out of bed but not anymore. I do yoga, don’t eat processed foods or sugar, I started fasting, and meditation, and take multivits. i did write a post about complementary therapies…