fibromyalgia

chattox

Hello everyone I was just wondering if anyone else has fibromyalgia, and how they deal with the symptoms. Dose it make you want to eat, or stop you eating?

I have been struggling to get motivated because of the pain, and the tablets are kicking my but and making me want to sleep.

I would be interested to know how everyone manages and maybe get some tips.
Thanks x

mbaker566

I have myalgia related to an autoimmune disorder

exercise will help in the long run. but at the same time there are days when breaks and rests are needed.

the more i stay moving, in general, the better i feel. i also think that i can feel cruddy and be unhealthy, or i can feel cruddy and be healthy.
so i eat at a deficit, exercise when my body allows.

ajwischmeyer1

I have been fighting with fibromyalgia since the mid-90s and it seems to do what it wants when it wants, regardless of medications. I have tried just about all of them and they work for a while and then stop. Just make sure you get lots of sleep. That and yoga prevent pain. Other than that, I just try to go about my business and ignore it. Ha, works better sometimes than others.

AgileK9

I too have had fibro since my 20's (early 90's). I did a lot with diet and exercise and that helped my symptoms a lot but I was still waking up in the middle of the night with pain. I recently started LDN (low dose naltrexone) and if you haven't looked at it, I highly recommend it. Other than some crazy vivid dreams, I have no side effects and no longer wake up in pain anymore. I'm lifting heavier than I every have and mountain biking as much as possible.

LINIA

YES----have it and it is very painful, the most discomfort occurs when someone walks up to me and touches or grabs me unexpectedly. Others holding onto my shoulders, ugh..not good.

So rest, but keep going. Keep the medications to a minimum, if at all possible...sometimes it is not.

Occasionally we have to give in but since there is no cure, then go, do, exercise, take part....otherwise there is no joy.
FUN is the opposite of the pain from our condition of uber-sensitivity.

Thank you for this topic @CHATTOX

kitaemma

I have fibro, the best days i have pain wise are days where I’ve exercised (yoga, a hike, or light cardio), gotten acupuncture, or did something that truly made me happy/distracted me from the pain. I’ve heard some people say that meditation helps. The fibro itself doesn’t change my appetite either way but the medication I’m on (lyrica) makes me super hungry so I have to be careful to not over eat or comfort eat. Overall I’d say if the medicine is making you super tired AND not helping with symptoms then maybe try to switch to something else. This is my second brand of medicine for it. CBD oil helps on days the pain is particularly bad.

aquariansmb

Raising hand here. I was diagnosed in 2018. I have spent a lot of time trying to manage it holistically with some success but as another poster mentioned, it does what it wants when it wants. I take supplements to help with inflammation and also did an elimination diet. I have been able to identify that sugars drastically impact the severity and frequency of flare-ups for me. I do think that exercise does help keep the feel goods flowing to lessen the severity of the pain. I also have learned that when my body says stop and rest, I do it. Fighting it only makes it worse. I think the worst part for me is the insomnia. I have tried things that work for a short duration but nothing long term. Poor sleep makes all the hurt 1000x worse.

Be patient with yourself. When you can do, do. When you can't, rest and nurture yourself in other ways.

corinasue1143

@aquariansmb, your story sounds a lot like mine. The thing that helped me sleep was a very low dose antidepressant. I had a hard time finding a doctor who would prescribe it, but it was worth it. Good luck.

aquariansmb

@corinasue1143 thanks for the info! I am glad you have found some relief, the lack of sleep is the worst!

MikePfirrman

If you all don't mind, my wife had debilitating Fibro around 7 years ago. So bad she told me she wanted to die. I'm an R&D recruiter, so for the next year, I spent 20 hours a week researching to get her help and hopefully heal her. At the time she got it, they said either opioids or gabapentin, two horrid options.

Fast forward to today, she's 95% better and even works out six days a week. Since she's not a MFP member, I can tell you what we learned along the way.

AgileK9 mentioned LDN -- among the drugs, it's honestly the only prescription option I'd consider. CBD Oil helps, so does Tart Cherry and Curcumin (but there is a far cry difference in some Curcumins, some are bioabsorbable). She found light acupuncture fine but not aggressive acupuncture. The Purewave messager was fantastic for her for releasing pressure points (it's around $90 and well worth the money). One of the best investments we made was in a Far Infrared Heating pad. Magnesium "Oil" is fantastic too at night. She takes Melatonin at night and stays off the computer or phone before bed -- that's a major thing. It's a Catch-22. You feel bad, so you can't sleep, get on the computer or phone and really mess up your sleep with the bluelight, which keeps you up more.

Other supplements have helped are Mirica (a European supplement -- one is a root, the other a powerful polyphenol) -- this was one of the top supplements that helped. Berberine -- it's a fantastic supplement that works like a safe version of Metformin (which is a AMPK activator). Berberine is safe and has no side affects.

The last thing was not to push herself and stay away from chemicals. Most Fibro patients, even if they don't know it, are chemically very sensitive. The byproducts from indoor pools set her off the most. She started with Tai Chi instead of water aerobics. Perfumes or cleaning chemicals make her very sick. Molybdenum is very useful to have around for chemical exposure (it's just a mineral, very cheap).

Going gluten free helped her immensely as well. So did eliminating cow dairy (she did a test and found she was allergic to cow dairy, though we eat goat and sheep now). We also went a lot more plant based.

I know this sounds like a lot but these were slow changes we discovered helped her immensely. She had a FB group with 3K members and growing but she shut it down because people wanted medical advice and we're not docs, just real people that turned around a nasty disease that is misunderstood. Speaking of that group, several women got sick from one chemical in Total Toothpaste (Triclosan, no longer in it).

Holistically, I found Mark Hyman, Jacob Teitelbaum and Ginevra Liptan as great starting points.

When she had the FB group, around 15 women had reached similar points of recovery as her -- nearly all had done a very similar regimen to her and nearly all were gluten free.

BTW, I went gluten and cow dairy free with her for support (and I do the cooking and had to reinvent my cooking style). Turns out I might have saved my own life because whenever we got accidentally glutened, she was OK, I reacted violently and had blisters on my rear. They think I was celiac in denial now. Most celiacs that continue eating gluten end up with colon cancer. So what started as support ended up being very important for my own health.

She never took one prescription but was in utter agony for around a year until we started piecing it together. I can't imagine people going through that with no or little support. Her heart ached when she'd read about people going it alone. Try to find some support groups as well.

MikePfirrman

^^^ I ran the above by her and she mentioned 3 more important things. One is a full spectrum Methyl B, the other is stress management and the last was a good, natural antiviral like Monolaurin. Many think that among the causes of Fibro might be a virus. Monolaurin will help with that over time. Many with Fibro improve after taking Monolaurin (a coconut derivative) for a while. And consult with your doc, though most are absolutely lost or don't want you as a patient if you even mention Fibromyalgia!

kshama2001

MikePfirrman wrote: »

If you all don't mind, my wife had debilitating Fibro around 7 years ago. So bad she told me she wanted to die. I'm an R&D recruiter, so for the next year, I spent 20 hours a week researching to get her help and hopefully heal her. At the time she got it, they said either opioids or gabapentin, two horrid options.

Fast forward to today, she's 95% better and even works out six days a week. Since she's not a MFP member, I can tell you what we learned along the way.

AgileK9 mentioned LDN -- among the drugs, it's honestly the only prescription option I'd consider. CBD Oil helps, so does Tart Cherry and Curcumin (but there is a far cry difference in some Curcumins, some are bioabsorbable). She found light acupuncture fine but not aggressive acupuncture. The Purewave messager was fantastic for her for releasing pressure points (it's around $90 and well worth the money). One of the best investments we made was in a Far Infrared Heating pad. Magnesium "Oil" is fantastic too at night. She takes Melatonin at night and stays off the computer or phone before bed -- that's a major thing. It's a Catch-22. You feel bad, so you can't sleep, get on the computer or phone and really mess up your sleep with the bluelight, which keeps you up more.

Other supplements have helped are Mirica (a European supplement -- one is a root, the other a powerful polyphenol) -- this was one of the top supplements that helped. Berberine -- it's a fantastic supplement that works like a safe version of Metformin (which is a AMPK activator). Berberine is safe and has no side affects.

The last thing was not to push herself and stay away from chemicals. Most Fibro patients, even if they don't know it, are chemically very sensitive. The byproducts from indoor pools set her off the most. She started with Tai Chi instead of water aerobics. Perfumes or cleaning chemicals make her very sick. Molybdenum is very useful to have around for chemical exposure (it's just a mineral, very cheap).

Going gluten free helped her immensely as well. So did eliminating cow dairy (she did a test and found she was allergic to cow dairy, though we eat goat and sheep now). We also went a lot more plant based.

I know this sounds like a lot but these were slow changes we discovered helped her immensely. She had a FB group with 3K members and growing but she shut it down because people wanted medical advice and we're not docs, just real people that turned around a nasty disease that is misunderstood. Speaking of that group, several women got sick from one chemical in Total Toothpaste (Triclosan, no longer in it).

Holistically, I found Mark Hyman, Jacob Teitelbaum and Ginevra Liptan as great starting points.

When she had the FB group, around 15 women had reached similar points of recovery as her -- nearly all had done a very similar regimen to her and nearly all were gluten free.

BTW, I went gluten and cow dairy free with her for support (and I do the cooking and had to reinvent my cooking style). Turns out I might have saved my own life because whenever we got accidentally glutened, she was OK, I reacted violently and had blisters on my rear. They think I was celiac in denial now. Most celiacs that continue eating gluten end up with colon cancer. So what started as support ended up being very important for my own health.

She never took one prescription but was in utter agony for around a year until we started piecing it together. I can't imagine people going through that with no or little support. Her heart ached when she'd read about people going it alone. Try to find some support groups as well.

I have chemical sensitivity and from my experience there is indeed a lot of overlap, and with Chronic Fatigue as well. The MCS group I used to belong to and a workshop I went to was well represented by people with FM (and CF.)

The first thing I did was reduce my exposure to chemicals and clean up my diet.

Books I found helpful:

• Why People Don't Heal and How They Can
• The Brain That Changes Itself: Personal Triumphs from the Frontiers of Brain Science

Here's the site for the workshop: https://retrainingthebrain.com

I was extremely skeptical, but my mother said she would pay for it, so I went. It changed my life! They are obviously not doing in person workshops at the moment, but they do have a DVD series.

Em_Ruby85

I have fibromyalgia too along with a few other issues. I'm on medication and I've also removed soy and gluten from my diet which has helped alot. I've found it difficult to exercise and I was really fit before this so it's a big change. I've put on three stone in a year and I've managed to lost one so far. Happy to have some friends to support each other!