Coping with Fibromyalgia: what works for you?

[paulabirdy]

I am wondering if any other fibro sufferers out there can chime in with any bits of advice about what has helped to alleviate your symptoms. I am at day 37 and, to be honest, not feeling that great. I started with the basic Whole30 plus no nightshades and will probably also drop eggs and nuts in the next few weeks. However, since these are pretty big, potentially long-term changes for me that often require that I often eat a separate meal from my family, I am trying to keep things as small-scale as possible.

So, if you don't mind taking a minute to let me/us know what has helped you, I would be so grateful! I am especially interested in the following:

-- Did you do the regular Whole30 or the AIP? Either way, how long did it take for you to get relief?

-- If you avoid nightshades, are you also careful about spices?

-- Have you been able to add any foods back to your diet after you finished the Whole30?

-- How much do you feel that exercise helps you?

-- How much do you need to sleep at night?

Some other info about me: I have a fairly mild case of fibromyalgia, but since I spend all day taking care of 2 young children I am very keen to get some energy back if nothing else. I think that some aspects of my health (allergies, headaches, blood sugar crashes, skin problems) have improved over course of the Whole30, but off/on pain and exhaustion continue. I felt really terrible the first three weeks of the Whole30 and am finally perking up, but things still aren't great. I do supplement with magnesium, a probiotic, and fermented cold liver oil.

Honestly, I am so tempted to eat the (good, homemade) food I feed my kids sometimes that I just about lose my mind. I just want to know that this is going to be worth it in the end!

[Robin Strathdee]

Hi paulabirdy!

I'm sorry to hear that you're fighting this condition! However, it's great to hear that you're seeing some benefit at this point. Honestly, I wish I could point to a specific day when things will turn around for you magically. Our bodies are all different - even when we suffer the same affliction - and it can take time (much longer than 30 days) to see a drastic change. It sounds like you're in this for 60, which is what I would probably recommend for you anyway. And I would encourage you to stick very, very closely to the AIP.

Hoping you get some good feedback and start feeling better soon!

[paulabirdy]

Thanks for the encouragement. I was hoping that there were some lurkers with the same problem who might have advice, but you are right: I just need to keep going. I will start the AIP in a week.

[NatPatJen]

hey there - i have dealt with mild to medium fibro for a few years after a very difficult injury. until the Whole30, eating Gluten, MSG, and sugar were the fastest routes to fibro pain; avoiding them mostly solved it. I can say that on a clean Whole30 the pain decreases even more; i believe it's the decrease in inflammation (both itself, and inflammed tissues closing in on hyper nerves). going without nightshades (AIP variation) has been relatively easy, but i can't say it's changed my world. being affected by nightshades is definitely an individual issue. and yes, you have to avoid red pepper, paprika, and all chile powders.

we're about 2 mos post Whole30 and the only foods we've added have been grain-free granola bars to beef up calories. this includes the addition of the only sweeteners we use - maple syrup or dates. we've felt no change in our various issues or negative affects with these additions.

as for nondietary stuff, i have to keep exercise fairly calm when i'm feeling higher pain levels (walks, gentle yoga, easy bikes rides) and when i feel good i take advantage and work out hard. however, i only work hard when fit. pushing past your limits while dealing with fibro will only stress your system in my opinion. you'll crash. however, zero exercise would be even worse. it's a matter of being cautious and self-aware both before and after exercise. also, check out the pre and post workout eating suggestions from ISWF to help prevent any crashes.

i seem to need 9 hours of sleep. i can live on 8, but i wake on my own, feeling good, at 9. and i never change my sleep schedule. ever; period.

you may consider seeing a naturopath to see what supplements will work best for you. magnesium & fish oil for instance.

finally, and i would tell this to EVERYone...don't skimp on the sweet potatoes and squash. without them, you may deal with low blood pressure (and therefore weakness, dizziness, and fatique) and/or low moods. we need that energy and serotonin! not every1 has issues without these carbs, but if i don't get two full servings a day i get sad or cranky and low BP. i work full time, exercise everyday, and cook constantly. i don't have time for low moods.

be well!

[Valmomy]

This is all so encouraging to me. I am Val, and I am determined to start my Whole30 on Wednesday May 1. I will admit, I am scared. I have so many health problems, and food allergies, and I feel overwhelmed by all the information. My issues are medium to bad fibromyalgia, low blood sugar, high bp, bad IBS, food allergies, thyroid replacement, and weight gain. I also have chronic vertigo. After all the reading, I can see that it really is so much about the food, and gut health. And yet I feel scared. I am mostly afraid of low blood sugar problems. I need something in my purse at all times, or else. I am not really sure what to put IN my purse. I was told to try raisins, all natural shredded coconut, and sunflower seeds. I am intending to go to the food store Monday, prep on Tuesday, and then start on Wednesday. I will do more research tomorrow. My cousins have had GREAT success with this. And my fibromyalgia is so bad it is crippling me, so SOMETHING has to give. I am excited, in spite of my nervousness, but could use support. I think I will find it here :-)

[NatPatJen]

Hi Valmomy! Welcome & you're right; this is a fab place for support. Even if you are only reading others' stories, you learn so much about how normal your own issues are (very validating) and then how treatable they are (uplifting!). Don't be scared! Be excited that you have the strength and sense of self to even consider making changes! (Most people do not, no matter how much pain they are in.) Be proud of your willingness to do something for yourself. Be happy that better days are close at hand.

Even without the Whole30, removing your allergy and sensitivity foods plus dairy, gluten, and fake "food" will dramatically improve anyone's pain. With it, you remove anything inflammatory to get back to your base. From there, you can decide how to test your fibro. What's nice on the W30...the rules are so strict that once you commit to it, you don't have the option of eating inflammatory food. Fewer choices, fewer fears. And secondly, it's just 30 days. You can move on thereafter if you hate it. Or your life will have changed for the better and you will just happily (and more easily) reach around and pat yourself on the back with gusto because you did it.

My specific advise for those about to start: shop! Plan only a week of food so that you are not caught without a plan during the first couple harder days (harder because of new habits and processes). But planning more than that could be overwhelming. Also, do NOT leave out the sweet potatoes. Diced, roasted SPs for breakfast with two eggs is amazing. A batch of butternut squash soup makes lunches easier. Add fat and protein and voila. Fibro made me emotionally more sensitive too; the carbs help my outlook.

As for on-the-go blood sugar control, sliced apples lightly doused with lemon juice and dusted with cinnamon are nice (cinnamon is a known blood sugar controller); add protein and fat; hardboiled egg and coconut for example. The raisin, coconut & seed plans works too (I can't do raisins personally; just too much sugar rush). There's lots of prep and planning but during the first week your excitement and web surfing will help make that feel more like an adventure, and thereafter, it becomes more habitual and even satisfying as you feel the benefits of your own self-care.

A note on your vertigo. I've dealt with tinnitus and ear "infection" symptoms for at least a year. Treating my adrenals naturopathically took care of the tinnitus but not the other stuff. The W30 solved it! Since vertigo can be an ear thing, maybe you will have luck there.

And find a naturopath! It's so nice to have a medical practitioner supporting your health so personally, professionally, and without piles of drugs. Having an educated partner when facing fibro is a joy.

The very greatest of good luck to you! Congrats on your Whole30 plans. (Long response; I know. Hopefully not too much so.)

[Valmomy]

Thank you SOOOO much! What a great and encouraging response!

I will go ahead and mention here, although not necessarily just to you, tat I have had a tumor in my adrenal gland, and had it, and the gland removed..so adrenals are messed with. Thyroid removed. Gall Bladder removed. And I have neurofibromatosis. (NF1) I think the fibromyalgia actually began with that major surgery 21 years ago, and then kicked up a notch with the stress of all the strange and challenging symptoms I have had all these years, with the other diseases and surgery. The vertigo thing started 7 years ago, from one day to the next. Long story short, the thought of being able to significantly give myself some relief, within my own power of choosing healthy foods, is very exciting. I am going to sit here for the rest of the afternoon and make my shopping lists and plan the meals.

I am really so glad to "meet" you! Your story has given me hope!

[NatPatJen]

Hi Val - I love your CS Lewis quote. Good job moving forward with your health given your conditions; it certainly must be a challenge! My biggest issue is more musculoskeletal but it's a constant battle - often by the hour. I imagine that your feel that way sometimes? I have the occasional pout or cry over it, but for the most part I keep a constant eye on how to improve like you are doing. (The more pitiful moments have decreased in frequency post-Whole30; another plus.)

One fun little W30 side effect: you discover new "go-to" foods. For instance where an average person might have 2-3 pieces of bread a day, I may have 1-2 servings of sweet potatoes. For awhile I thought it was weird but then realized it was just a "go-to". Pre-Whole30 I'd have peanut butter on a slice of gluten free toast almost daily. Now I have a hardboiled egg and coleslaw....almost daily! I still laugh at the new normal around here.

Happy planning and shopping to you!

[paulabirdy]

I almost forgot I started this conversation after nobody replied...NatPatJen, you are the best! Our situation sounds a little similar -- I've had low-level fibro symptoms for years but ignored them until a back injury took over my life in January. All the related stress and subsequent lack of exercise made things so bad that I had to take notice and actually seek a diagnosis (which was SO helpful: I'd much rather know what my problems are by name than just be the person who doesn't feel well all the time). My allergies, some skin problems, and a lot of achiness have cleared up but I am very, very tired most days and still have some IBS symptoms. Personally, I know I need to drop nuts & seeds, exercise a little more (I'm afraid to over-do it and hurt my back again), and find a naturopath. My rheumatologist was very helpful with diagnosis, but to be honest I don't think he is ever going to help me get better when the only thing he offers is a prescription.

Valmomy, good luck! I will say: don't quit if you don't feel better right away. I felt much (much) worse before I felt a little better and I'm still far from amazing. My body craves bread so badly and it took almost three weeks to stabilize my blood sugar without grains. I eat a sweet potato every day and probably a little too much dried fruit, but I am working on that. I have found that, since I am listening to my body so much more carefully now, I have discovered some other food sensitivities (to random things like cabbage, green beans, eggs, and some nuts & seeds) that I never knew I had. It's been a little depressing to take so many things off the list before adding any more on. But, I am still trusting that this will be worth it in the end and that someday I can add some stuff back again.

For anyone interested in the AIP, I found an e-cookbook that was just released and bought it right away:

http://autoimmune-paleo.com/cookbook/

I printed it off at Staples and have really enjoyed flipping through it. There are some great ideas for egg-free sauces and condiments, since a lot of paleo recipes have eggs.

[Valmomy]

Today is day one for me! I have to say, I was in the kitchen for 12 hours almost, prepping, cleaning the frig, cooking in advance, things like that. By the end of the day my fibromyalgia was so bad I was weeping-- which then propelled me right back to the fact that this may improve over time, on the Whole 30! Sadly, I am starting this two days before my period hits me, and at my age (49) it hits HARD. Sadly, I am already PMSing, and emotional, so not sure how I am going to tell the difference as I track my physical responses. My fear--knowing I cannot use Advil for the pain, as it is an NSAID. Tylenol is like water for me lol But, I am determined!! I am wondering what this will do to my hypoglycemia, and knowing I am a little afraid of low blood sugars, I do have raw coconut and some dried fruit for snax, just in case.

So, here we GOOOOO!

[NatPatJen]

Morning! Congrats on day one! I hear ya on the prep - and had to laugh at the fridge cleaning. Starting the W30 made us toss out stuff to make room for the massive piles of veg, which lead to me scrubbing the fridge. A lot of prep, but you'll be glad for it.

Hey - on the pain levels, I can tell you that my naturopath prescribes turmeric (500-1000 mg) for inflammation. Bromelain is also a great option (I've done 500mg 3xs a day). And of course, high quality fish oil is a super powerful anti-inflammatory agent. Your liver etc will thank you for losing Tylenol and your gut will heal more quickly without ibupofen. Don't forget baths with epsom salts to ease muscles!

Your monthly cycle will be more pleasant on and after the W30 too; so many good things to look forward to on top of all the healthy, nourishing food! Happy day 1! And if you like tea, and combo of ginger and cinnamon stick seems to help my sometimes fussy blood sugar. Just a thought.

[NatPatJen]

Hey there Paulabirdy - thanks for the link. I seem to be ok with nightshades etc but my husband is still on a 6 week trial without them and we're always playing around with new recipes. This will help.

I too found that it seemed like I had developed food sensitivities but now about 3 mos post day one, I really feel it was a combination of many things that made me react here and there. For starters, our great grandmothers are right - chew your food. ESPECIALLY brassicas like cabbage and broccoli; I'm not always good about it, but when I'm more aware it helps me avoid bloating...plus it allows the enzymes in your saliva to mix with your food so you absorb more nutrients. Also some veggies are hard on your belly raw, so you could at leastly lightly steam as your gut heals I suppose. As the weeks passed, and also after my ND added glutamine to my pre-meal apple cider vinegar drink, a lot of those "sensitivities" faded. Thank goodness; I could never live without my precious seeds!

Be well!

[adammcateer]

I know I'm bumping an old post, but I'm just curious to see if any of your symptoms reduced after the diet?  I too have been diagnosed with FM and am just completing the whole 30 AIP, although my symptoms have maybe eased slightly but not gone so I'm doing a whole 60-90 AIP to see..

[Lynn L]

Adam, I am on day 11 and have Fibro. I was curious what your experience has been on the diet? I am not doing it AIP as I have a whole garden full of tomatoes! However, I noticed that I my body is tired and I am pretty sore. I am continuing to run but I am thinking this week might be slower that last week (if that is possible!). I just hate to limit my diet even further. Thanks for your thoughts.

[adammcateer]

I'm currently on Day 34 of the AIP whole 30-90.. Not doing too bad, I feel like my muscle pain in the morning is easing slightly and i'm sleeping better.  Yeah, the diet is quite restrictive, I has loosened up slightly after the 30 days, maybe slightly more fruit / dates etc. but still no nightshades.. I started taking 5g of L'glutamine before bed so that might be helping too. I will keep you updated on any progress..

[bashful]

Hi Paulabirdy ,

i am new to here too . i am looking for the support of the groupfor myself because i always  pput myself last and facilitate failure , so here i am , jumping in and this time its to help but also to be helped, a balanced approach I hope, :-) , but my profession and doctorate is Natural medicine and i deal with fibromyalgia frequently. Cupping therapy can be very useful as it draws fresh nutrients into the area of fibre . You can buy a kit on e bay for 60 dollers , used properly it can be a life saver and as it is a free therapy you dont need a degree to do it , i will help you with it . Secondly , if you look up these two points, K27 and Spleen 21 in google as acupuncture points, you tap these points like you are sprinkling damp salt, that kind of pressure, doing the k27 point on one side with the opposite sp21 point will help increase energy and balance blood sugars. Tap them for ! minute before and after meals, rememeber  to drink plenty of water too. Also massaging the K27 point daily three times for about ! minute  is excellent , if it hurts , keep rubbing , this is a sign it needs the rub! this will help your fibro myalgia by stimulating the kidney which is the organ for cleansing the body fluids . I hope this helps . If you want more info on cupping , i can help there too .

Best wishes ,

Bashful

[praxisproject]

I don't have fibro, but suffer from severe inflammation.

 

I highly recommend the naturopath, mine has discovered some very important health issues I was unaware of, as they required not just tests, but checking the test result markers against each other for conflicts. My blood levels of vitamins show as quite good, but the detailed marker numbers underneath don't add up, because I can't de-construct them and actually use them.

[drtracyb]

My fibromyalgia pain disappeared completely when I went whole30.  When I cheat, I ache the next day enough that I now rarely cheat.  My whole30 has ended up being a lifestyle.  My joint aches used to keep me awake at night.  I haven't tossed and turned since September 2013 when I did my first whole30.

[km4098]

I am doing the AIP (for 30 days for now). I have Fibro, Chronic Fatigue, PCOS, Endometrisosis, Adrenal Fatigue and a couple of autoimmune disorders. Being gluten and dairy free generally has helped me, I'm doing the W30 AIP to try to get a boost and reduce some inflammation.

 

Powdered magnesium before sleep is really helpful, as is a hot bath before bed with epsom or himalayn crystal salts. If you get depression as part of your fibro, a few drops of basil essential oils (in a carrier of olive oil) in the bath help a lot. You need to be in the bath at least 20 minutes. Getting out in the sun really helps too. I have a toddler so my sleep is a bit disjoined (and I also have chronic insomnia).

If you go to bed and can't sleep, give yourself 10 mins, and then get up and do something quiet. Yoga, a meditation. Something with lights low, nothing stimulating, no screens, no tv. Then try again in 20 mins. Guided meditations can also be really helpful.

[NannyD]

I had nerve damage, after a surgery, and it gave me symptoms like fibromyalgia headache, terrible, I could not function, I was on 1400 mg of Gabapentin a day, and it was like sleepy most of the time.  I found Essential oils, doterra, and a blend "Deep Blue" and past Tense helped me so much, that I went into sharing and selling the oils.  Going Gluten Free in October 2013 helped me too.

 

Best wishes,

[Tanya K]

I have ME which is chronic fatigue/fibro for nearly years. I started a paleo diet 12 weeks ago. Within 2 weeks all pain was gone. But what I do struggle still with is a tiredness in my head if that makes sense?. Like I have a hell of a lot more energy and I am like a different person. I also work much better if I get 9 hours sleep. My problem is that if I sleep by 11 I am awake again til 1 and then have to get up at 7. Now, luckily enough for now I am not at work, so I rest again for 1hour to 2 hours then late morning. This way I am still making up the 8/9 hours that I need to feel ok. Bit I do wish I could sleep through straight for the whole 9'hours. At the weekends I go to sleep later but am up awake and alert 8 hours sleep later. I don't really get it.? My detox lasted for roughly 6 weeks, it was quite awful really, but the pain never ever has come back! I do think grains were making me ill but also copious amounts of sugar in any form certainly wasn't making me feel well either. I do hope that someday that I will be free of all that head tiredness.

[lkibsy]

I have Fibo as well as adrenal fatigue, SIBO, leaky gut, hypothyroidism and hormone imbalances. The one thing that I find is a big trigger for my fibo is stress. As soon as my stress level rises, by body just starts aching. The things that I find help me the most with dealing with stress is HeartMath by Inner Balance (for meditating), walks outside in the sun, getting a TON of rest, baths, lots of magnesium, and really making sure that I am taking care of me first and foremost.

 

I have been Paleo, more or less, for about 3 years which has really helped. I also find that if I'm not looking after my other health challenges, the fibo really creeps up.

[Jenny231]

I have a moderate case of fibro (FMS). I am starting the AIP protocol because it is quite strict. I will then add in other things after the 30 days. I have been experimenting on and off with different foods since finding Whole30 AIP. The biggest thing for me is cutting out ALL nightshades (even spices) and all nitrates/sulfates. Those seem to really make my FMS go crazy. Super flare! Especially from tomatoes. The thing I am having the hardest time with is caffiene/coffee. I hope to start the full 30 day AIP program soon. GL to you! BTW plenty of sleep and excercise daily is key! And hot showers

[tj2650]

I have a moderate case of fibro, IBS and CFS.  I started my whole30 in March.  It took about 3 months for my system to start recovering.  My IBS is almost completely gone, my migraines have been reduced substantially.  My CFS has not been impacted at all by the changes, but we are now doing further testing to ensure my sleeping is adequate to address those issues.  

 

As for the body wide pain, I can say that certain foods return me to my problem state.  I added sweeteners and sugars back into my diet and found that it sends me into an endless spiral.

 

My advice to anyone trying this out, if your autoimmune issues are significant it may take more than 30 days to reset the system, and may take more than 1 slip up to recognize your triggers...