03.21.2018

It’s time to take a new approach to fibromyalgia

This article was originally published on NationalPainReport.com and is being republished here with permission from the editor. This article is an introduction to my new Healing Fibromyalgia series. Don’t worry! I will still be covering the usual fibromyalgia, chronic fatigue and Lyme-related treatments, research and news, but this will be additional content I’m adding to FedUpwithFatigue.com. 

It's time to take a new approach to fibromyalgia (Introduction to the Healing Fibromyalgia series) | Fed Up with Fatigue

Do you view fibromyalgia as an incurable disease or a symptom of a deeper problem within the body? The answer to that question makes a difference in how we manage life with fibromyalgia and if recovery is possible.

If we believe fibromyalgia is a disease in and of itself, we take on the baggage that comes with that. Namely:

  1. There is no cure for fibromyalgia. We will live with chronic pain and 50+ other life-sucking symptoms the rest of our lives. Oh joy!
  2. Certain drugs and exercise may lessen our symptoms but probably not, according to clinical data.
  3. We need to suck it up and wait for some pharmaceutical company to develop a drug to fix us. Of course, said drug is not really going to cure us because there’s no money to be made in doing that. It’ll just stifle symptoms and cause its own set of side effects in the process – likely at a cost many of us can’t afford!

That’s a pretty dismal view of life with fibromyalgia, and I personally don’t accept it. I think it’s time for us to start looking at fibromyalgia differently! Instead of popping pills that only make us sicker and waiting for a cure, let’s be proactive and focus our energies on actually healing the body, not just treating symptoms.

There’s ongoing debate on whether fibromyalgia is an actual disease or a syndrome, which a collection of symptoms of unknown origin. My view is that fibromyalgia symptoms are a signal that something has gone horribly wrong in the body.

I want to be clear: I am NOT saying fibromyalgia isn’t real! Our fibro symptoms definitely exist. They scream at us all day, every day. But I do not believe a fibromyalgia diagnosis is a life sentence of misery. People can and do beat this condition!

I think if we can figure out the underlying cause(s) of our symptoms, recovery may be possible – or at least a noticeable improvement in our overall quality of life.

You’re probably wondering, “How am I supposed to figure out what’s causing my fibromyalgia symptoms when even my doctors can’t?” If you step outside the world of conventional medicine, there ARE known causes for the symptoms that manifest as fibromyalgia. Undiagnosed infections, heavy metal toxicity, mold exposure, food allergies and poor gut health, among others, can all cause and intensify fibromyalgia symptoms.

Our bodies are beautiful, elegant machines. They are designed to heal, so if we support our bodies in that effort, improvement is possible. We know, at least anecdotally, that certain therapies can and do improve the quality of life for some of us with fibromyalgia. We can also learn from those who have already recovered and find patterns in the steps they took to regain their lives.

So how can you support your body in healing? Over the coming months (or more likely, years because this topic is so rich with material), I am planning to do a series of articles on that very topic:

  1. I’ll cover the high rate of misdiagnosis in the fibromyalgia community. Too many doctors are diagnosing fibromyalgia without fully ruling out other conditions. One research study found up to two-thirds of fibromyalgia patients were misdiagnosed. Sadly, that means millions of fibro warriors may actually have treatable medical conditions! I plan to compile a list of conditions frequently mislabeled as fibromyalgia to help determine if our doctors got it right.
  2. I’ll discuss environmental and other factors that lead to fibromyalgia symptoms and how to reduce our exposure to toxins that are likely exasperating our symptoms.
  3. I’ll share steps we can take to help our bodies heal and feel better overall. Healing goes beyond your conventional doctor’s curt advice of exercising and losing weight!
  4. And finally, I plan to feature interviews with people who have recovered from fibromyalgia or are well on the path to recovery. The purpose of this is two-fold: It reminds us that recovery is possible, and it gives us a bit of a roadmap on what has worked for others.

I believe the key to feeling better is figuring out your specific underlying cause(s), and then addressing those in a systematic manner while also supporting the body in a healing way. Lots of small steps over time can make a difference! I’ve learned that from my own healing journey.

I know some of you are already calling BS. You’re likely thinking, “Is she serious? I’ve tried everything, and nothing helps!” That’s ok. I understand the skepticism. I’m not claiming to have a cure, and I’m not making any promises.

I just know many of my fellow fibro warriors are suffering way more than they need to be. This series is my attempt to help alleviate some of that suffering. Let’s do this!

Now it’s your turn: In the comments section below, share one thing that’s helped to reduce your fibromyalgia symptoms. Let’s learn from each other! 

Comments

  1. Hi Donna,

    Have you read The Wahls Protocol?

    I was guided to this remarkable book by a fellow MSer and found it quite eye-opening.

    Dr Wahls goes a long way to explaining the underlying function and malfunction of our mitochondria which she believes to be the root cause of many chronic illnesses.

    As you can tell, I don’t have fibro. I have MS and both conditions share many of the same symptoms.

    The mitochondrial explanation enthralled me and I have been following this diet plan ever since. My MS is still here, but it is far better than it might have been without Dr Wahls.

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I’m familiar with her work. Very inspiring! I’m so glad the Wahls Protocol is helping you!

  2. Jeri Finn says:

    Donna.. I’ve not received a post since March 21 2018. Is there a problem?
    Learned of this dread condition in 1996 and this year marks 22 years of
    battling Ffibro and CFS.
    I agree Fibro and CFS are progressive.
    .
    Took meds for a year or so…..the side effects convinced me to give up meds.
    Bit the bullet ..until this year. Began taking CBD and Cannabis oil. It helps some
    and I grateful for any degree of relief.
    I fight the good fight and hold out hope for the future for all who suffer with Fibro!
    Look forward to receiving your posts once again….they do help.
    Sincerely,
    Jeri Finn

    • Donna Gregory/FedUpwithFatigue.com says:

      I just checked and it looks like you resubscribed this morning. I’m not sure why you weren’t getting post updates. I’m so glad you’re finding some relief with CBD and cannabis oil.

  3. Linda Wells says:

    15mg Oxycontin without a doubt.
    Very cruel to take a 64yr old lady off pain meds that helped her move about.

  4. Dana M says:

    Thank you for this. I too refuse to give up. I’ve been reading articles of people who say they are cured or in remission. I believe we can do it too! I look forward to your articles on the subject.

  5. Pamela Craft-Jenewein says:

    What I do to keep my symptoms from totally owning me:
    1st: LOW DOSE NALTREXONE – my best friend, buddy and life saver. I started in June 2017 and have not looked back. Within 3 weeks I was practically pain free. I started experiencing bleed through pain because I could actually move so kept over doing my tasks. However, my fatigue and stiffness are now to the forefront; dominating my life like the pain did. The stiffness I manage with light weights/calisthenics however, battling the chronic fatigue leaves me frustrated. Its why I still take the Cymbalta (30mg daily) – it helps me not to give into the meltdowns from “ignoring” the fatigue.

    2nd: Exercise; light weights, calisthenics, and leisure walking keep those endorphins [happy hormones] bouncing around in my body. Thus, keeping depression at bay.

    3rd: DISTRACTIONS: I keep a ton of distractions on hand: reading, writing, journaling (art and writing), research, advocacy, my pets, my gardens, my farm, my granddaughter, sewing, crocheting, jewelry making, scrapbooking, genealogy, tormenting the husband (now that is fun!!!), etc. I also, on a daily basis, post to Twitter, Facebook, My Chronic Pain team and other areas of interest.

  6. Alice Rand says:

    Hi Donna, thank you for this article. It is thought provoking but right now I am at a super low. I would consider my Fibro severe. So much pain and no energy. I am mostly housebound. Right now I don’t even have the energy to experiment with so called cures or other modalities for helping myself. I have read responses from others and some do seem plausible. Help

    • Donna Gregory/FedUpwithFatigue.com says:

      You’ve gotta find that little spot inside of you that says, “Keep going. Keep trying.” One of the only good things about fibromyalgia is that it ebbs and flows. There are times when symptoms are life zapping, and we can’t get out of bed, and then there are times when they are more manageable. Right now you’re in the depths of it, but it won’t always be so bad. Love to you, and sending you big hugs.

  7. You are so spot on! For me it was tossing the medication (I am highly sensitive to everything), changing my diet, and exercising. Bottom line for me is if I eat crap, I feel like crap. I have had to cut out a lot of foods – gluten and dairy – and have cut back tremendously on sugar and alcohol. I am not 100% better, but I am a high-functioning fibro warrior.

    • Maritza says:

      Hi there! Your comment completely resonated with me. I am now functioning at a high level I would say, never back to my old self however, after 21/2 years of stopping gluten , dairy and processed sugar I am now finally feeling better. I started doing Pilates in November, December was still very rough but January came and I started to improve. With ups and downs, we know healing is not linear, but by lows are not as bad as they were before. I was taking 600 mg of Gabapentin, I am now taking only 300mg. Also take duloxatine 30mg and something for my sugar level which I believe is not related to the fibro…diet, excercise (any level and any type) and a positive and grateful attitude I believe make a big differece. I’d like to think this is curable and that I will be able to conquer it as others have too!

  8. Maggie Chesnutt says:

    Low dose Naltrexone has allowed me to exercise without the debilitating rebound pain and exhaustion.
    Gentle yoga has been very restorative – I do it generally once a week though twice is better.
    Finally, addressing fascial pain by using a therapeutic ball to reduce tender areas has also been key. Recently have found the use of a foam roller will also help these painful knotty areas.

  9. Connie Cochrane says:

    Hands down, electromagnetic resonance treatments. It is used for all types of trauma or disease of the body. You lie in a very comfortable chair for one hour while the electromagnetic field does it’s magic! It is by far the one healing modality that has given me significant decrease in pain. It is not covered by insurance, However my husband paid almost $4000 for treatment from a functional medicine doctor that did not even come close to giving me the same results. Search Magneceutical, Inc., to read about the science behind this modality and also search for locations near you. In addition, there are multitudes of live testimonials on you tube. You have as many sessions as you feel have given you the best result possible by decreasing your pain and gaining energy. Maintenance is necessary by simply having one or two sessions per month, thereafter. I keep telling other people who are suffering from all types of pain and diseases about this healing modality and no one seems to believe me. I would not waste anyone’s time because I know how valuable energy and time are. Please research and see if it is something you’d like to try. May God Bless!

    • I bought one of these devices. The comment or above is telling the truth – Magnesphere has saved my life.

  10. Hi, I believe I had an underlying genetic tendency towards fibromyalgia as my Dad also has it. I had a series of injuries between 2012 and 2013 which really brought out the symptoms badly. A car accident, a broken foot and a broken toe – all separate incidents. Most people I have spoken to with a fibromyalgia diagnosis say they have suffered some kind of trauma (often to the neck).
    I am in the U.K. but am currently trying to get to a clinic in Arkansas USA called The Neurologic Relief Centre, where they believe in helping the body to heal itself.
    The methods they use are listed here:
    https://www.facebook.com/TheNeurologicReliefCenter/posts/1650769838288528

    Their website is http://www.seeingyouwell.com

    I think you may enjoy reading their approach and they also post a huge number of testimonial videos on their Facebook page.

    I’d be interested to know what you think.

  11. I have Fibromyalgia symptoms resulting from nerve damage, from 2 Failed back surgeries.
    My back is fused at L3-4-5. The first surgery was for a spinal synovial cyst. The doctor dug into my spine to get it out, resulting in nerve damage.
    There is my problem! The last 12 years has been a roller coaster of extreme pain, doctors and lost money! All wasted!
    I do my best everyday to be happy, and live the fullest life I can! I am disabled.
    I have tried every drug that I was allowed to help with my fibromyalgia symptoms, but no relief can be found for me.
    I am currently getting help with a new diagnosis of PTSD with BWS.
    Keeping my mind and body at peace and calm helps.
    I am considering a holistic approach.
    No one can fully understand fibromyalgia unless you are suffering from it. The drs that I went to have never felt such nerve pain! Not having the ability to get out of bed but forcing your body to move.
    It is a life sentence for me. Maybe someday……….

  12. Holly says:

    This has been a super conversation–thank you Donna. The best thing I ever did for my fibro was to begin seeing a naturopath and a homeopath. Iyengar yoga also helps a great deal.

  13. Katherine says:

    The things that help….I am a hodgepodge of ailments – trocantor bursitis in both shoulders, both elbows have tennis/golfers elbow, osteoarthritis. A big muscle lump on the inner bottom side of my elbow.
    I do take pain med when I need it, I take vitamin D, drink lots of good herbal teas, avoid sugar the best I can.
    I had a total hysterectomy in my early 30s and was on hormone replacement that I stopped two years ago, and as my original rheum told me, if I stopped taking hormones it would be like hitting a brick wall. How right she was. So, the gyn put me on Vivigel which is a bio identical hormone and let me tell you within a weeks time I started to feel emotionally better. You all know what an emotional roller coaster Fibro/Chronic Fatigue is. My pain levels are lowered as well.
    In the warm weather I am in the pool a lot. I walk and float and it helps with the pain. I cannot tolerate damp weather for too long nor can I tolerate high humidity. When there is snow on the ground I feel great, it acts as an insulator is my guess.
    Is there any gals that have had hysterectomies that can relate about the hormone deal?

  14. Janie K. says:

    I take quite a few supplements for my Fibro as well as Wellbutrin and Gabapentin. I was on 3000 mg’s a day of the Gabapentin but recently went down to 2400. I actually feel better on the 2400 than on the 3000.

    Before breakfast each day, I take a probiotic. After breakfast, I take a multi-vitamin along with Super B Complex (which helps with energy) and a K2+D3 vitamin combo. CoQ10 and Turmeric Curcumin with Bioperine helps me with my pain. I also take Antarctic Krill Oil (instead of Fish Oil) and Magnesium L-Threonate (which is suppose to be the best magnesium for Fibro sufferers.) I take all of these pills with a glass of water containing d-Ribose powder. Trazodone helps me sleep at night.

    I have recently started power walking with small weights, at first 10 minutes at a time and now 15. I hope to increase it to 20 minutes in the not-too-distant future. P.S. I walk 3 days a week.

    Thanks to everyone who has participated in this survey. It helps a lot to discover what other sufferers do to relieve their symptoms.

  15. The most useful thing I use is an Alpha Stim, UK links http://www.themicrocurrentsite.co.uk/, a fortnightly massage keeps me moving, this can either be soft tissue/deep tissue/cupping either all over or area specific dependant on my need and pain level.
    Daily exercise of some form, having tried various things over the last four years, finally settled on walking, distance varies dependant on tiredness and pain level and whether I am walking pain away. Using a Rebounder, started with just a couple of minutes and now can manage about 12 minutes. Using resistance bands for upper body strengthening and have just started Tai Chi, ideally would like to one thing daily but average 5 days out of 7.
    Food- gluten free diet and as whole food as I can make it,
    Supplements – Vit D, probiotics, CoQ10, Glutamine powder in water after I have exercised.
    All this does not make me pain free, but it reduces a lot of pain and allows me to get on with daily home life, I am in a situation where I don’t have to go out to work, I am a craftworker so do what I can from home.

  16. Maretha Price says:

    Lavender oil! Spraying it in my house, rubbing my joints with it directly and bathing in it (mixed with a little epsom salt!)

  17. Jo Huckvale says:

    I am with you all the way and definitely do not trust big pharma. I tend to regard my condition as a syndrome and very recent events have made me wonder if it would be fruitful looking into whether some people have been affected by head injuries large or small, even if there was not always unconsciousness. My reasoning for this is that I fainted as a result of coughing a couple of weeks ago (diagnosed as vagal syncope). When I came round I could remember nothing about the day before. Ten days later, my chiropractor helped me to understand that concussion can go on for ages and I have recalled several incidents of large and small head trauma during the last seventy years. I have suffered from brain fog and migraines since my early twenties and gradually fatigue and other problems have set in. I googled and found this very interesting website, initially because I wondered if the concussion had made me feel hungry all the time….. https://theconcussionplace.com/symptoms/ So many similarities with fibro symptoms. Also implicated is the vagus nerve and I have been googling that too and have started to put into practice some of the suggested ways to fix it, particularly breathing techniques. As the youtube presentations etc point out that this nerve controls both brain and gut and therefore so many other digestive functions. – I hope this may be of use to you and readers of this website in some way. As a group of people with extreme motivation to escape from our fibro and related horrors and lead normal lives, I believe that our own shared wisdom and light bulb moments will ultimately provide the leads and pave the way.

    • Bwatson says:

      You didn’t even say if your idea of the source and the cure for you panned out. Nicely said but I’m not buying it. Cheers and good luck.

  18. I have chronic fatigue with occasional periods of pain. I’ve tried many things over the years and agree with so many of you that it’s really been about a multi-pronged approach. I, too, have major trouble with sugar and have been keto x 4 years now. It helps, but hasn’t been a cure.

    My own focus arose over 20 years on the role of adverse life events and how they shape nervous system function to also influence our immune systems, guts and gut flora and long-term health. It started when I first learned about trauma in Peter Levine’s book “Waking the Tiger.” I didn’t recognize any personal history of trauma when I first read it but over the years learned how to recognize just how subtle it can be. For example, I was hospitalized twice as a child for severe asthma and in the few years before my first symptoms started had surgery under general anesthesia and was in a few car accidents.

    The progress I experience most visibly in myself comes from healing the effects of adverse events on my nervous system and gradually resolving states of underlying and very subtle fight/ flight/ freeze. It’s been a pretty fascinating journey so far and I am much much improved though still have a little ways to go.

  19. A great article Donna, I’m looking forward to seeing more!
    I will also share this post too. 💜

  20. Sugar is my worst culprit. I notice instant pain when i eat sugary things like powdered donuts, sweet desserts. I try whole heartedly to remove all sugars from my diet but it is difficult especially because my family keeps bringing these things into the house and i can only resist so long.
    I also know that i am overloaded with metals. I want to try Epson salts baths with essential oils some day. When you can’t find holistic doctors that will tell you these things, it is very difficult to get your family on board with you.

  21. Love this Donna and I look forward to reading along. I actually want to cover a similar outlook on my blog (but through my personal point of view/experience) as I very much fit into this. At one point, when I was essentially at my rock bottom, I gave up and figured that there was no way I could get better. I’d tried so hard to get better but nothing was working. I was house and mostly bed bound. The fatigue was overwhelming. My doctor couldn’t do anymore for me.

    Luckily for me, an opportunity came along for my blog (to review Dr Rawls book Suffered Long Enough) and I decided I had nothing to lose by trying his advice. That was the catalyst to me finding my feet again. I subsequently learned that I had Lyme disease, mitochondrial dysfunction, autonomic dysfunction, an under active thyroid… and ultimately continuing on that path led me to stem cells. I still have months of healing to go but I feel like I am now getting my life back. I almost have to pinch myself each day as at one point I didn’t think this was possible. Not everyone will walk the same path but I do think it is worth looking beyond a diagnosis.

    • How did you find out that’s what you had?

      • Donna Gregory/FedUpwithFatigue.com says:

        I was tested using iGenex Lyme testing, http://www.igenex.com. The standard testing used by Labcorp and Quest and similar labs only catches around 50% of Lyme cases for several different reasons. I still test negative when I have that standard test even though I know definitively that I have Lyme. The iGenex testing includes more antibody bands than the standard test, so it is more accurate. I’ve lost count of the number of people who have told me they were initially diagnosed w/ fibromyalgia and later found out they have Lyme. The Lyme disease support groups on Facebook are full of those people. I believe a big chunk of people w/ fibro probably have undiagnosed Lyme and don’t know it. That being said, I’m NOT saying everyone w/ fibro has Lyme. I know there are other underlying triggers. The symptoms of Lyme and fibro are the same but the difference is Lyme is treatable while fibro is managed, very poorly in most cases.

  22. Morning everyone,this is such a good idea,my problem,the worse bit is don’t like being touched as l am so sore with it,round the bra line being the worse,just lately have been taking strong turmeric,with black pepper,capsules,much better,also been shown down at the hospital,when l pulled my shoulder,how to get rid of all the muscle lumps l keep getting,some are really big,and all over the place,you press firm on them for one minute,then let go ,it’s like letting a balloon down,did not even know l got these,they really hurt,the ones in the groin and round the rib cage the worse ones,l gave up taking pills from the doc,l gave up asking about my fibro,altogether..

    • Katherine says:

      Funny that you mention muscle lumps – I have one on the inner portion of my elbow. I have had an ultrasound and an MRI and have been told it is a “muscle mass”. It baffles me because I really do not do anything with such repetitive movement that it would cause this to happen, however I also now have trocantorbursitis in my shoulders and in both elbows we have tennis and golfers elbow. Now if they said I had the worst case of carpal tunnel they have ever seen I would agree, but I do not. I certainly cannot press on both top and bottom of elbows without nearly dropping to the floor in pain. Last injection rheum gave me was so painful I screamed but it has has helped but did not get rid of the lump. Any thoughts?

  23. Last year, I was advised to stop eating all grains and foods in the bean family — in other words Paleo. Within a few months, I improved. Then I came across Dr. Gundry’s book The Plant Paradox and realized I was still consuming lectins — in chia, sunflower, and pumpkin seeds. When I stopped eating those, I improved even more. I figured out I have sleep apnea (fibro symptoms can result from not getting enough oxygen while you sleep). Finally, end of November, I began seeing a bioenergetic nutritionist who identified an under-functioning hypothalamus. I’ve been taking homeopathy for this. At the age of 62, I am feeling better than I have in 25+ years! I got off all the drugs I used to take (except for Acyclovir) and can actually exercise. The arthritis I used to have in my spine, knees, and fingers is gone. Also, I read the Calcium Lie II, stopped taking calcium supplements and put Himalayan pink salt in the water I drink.

  24. Organic/paleo diet, magnesium oil, coq10, and daily stretching and exercise are the major things that help me but there are many other things as well. None of them makes enough of a difference on their own but in combination they significantly improve my quality of life. Of course, it’s still a daily battle and if I stop any of these things it takes a very short amount of time to get worse again. I would be interested in doing an interview at some point in the future. I don’t really consider myself “recovered” but I know I’m doing better than many other fibro warriors.

  25. Cindy Fisher says:

    I’m not sure just one “thing” has helped more than others. My fibromyalgia comes with more chronic fatigue than pain, so probably my top two items would be low-dose naltrexone and colostrum. The LDN has made me feel better overall, and the colostrum has really boosted my immune system. I’m so happy you’re going to be exploring underlying causes. I’ve always wondered if I have been exposed to toxic mold since my symptoms didn’t start until after we moved into a 100+ year old farmhouse.

  26. Jennifer says:

    I love you idea about alerting others. My fibro was caused by: Lymes Disease, 12 coinfections, Mold toxicity, Heavy metal toxicity, and parasites. Yes, parasites. I’m fighting this hard core and I am finally turning the corner. You can always talk to me about my experience to help alert others. Every one deserves to be healthy. Everyone deserves to be pain free. Everyone deserves to have enough energy to live a decent life. This is possible.

  27. Julie Faust says:

    When I actually do it, mild water aerobics helps a lot. It must be in a warmer/therapy pool though. If you have a big enough hot tub, that works too.

  28. Looking forward to this Donna!
    For me Low Dose Naltrexone is a big lifesaver. Though I do a great many other things too.

  29. Cindy Diodonet says:

    Drinking thyme and ginger tea every morning and thyme tea at night has helped my fibromyalgia symptoms. I also do an Epsom salt bath three times a day. Medications stopped working, so I searched for something natural. These have been really helpful. Thanks be to God.

  30. I’ve been on my own journey of searching out foods, environments, and movements that make my fibro worse AND what makes it better. It is a slow process, but it is worth the effort. Here are a few things that definitely help:
    1. Alcohol – I have been a wine/beer drinker all my adult life (I’m a 57 yr. old female). When I met my wonderful husband of 7+ yrs over 8 yrs ago, he told me he did not drink at all. I thought I would stop drinking to see if it would help me (and I come from a long line of alcoholics on my mother’s side, so why not break that cycle?). I was not an alcoholic (just stopped one day without any issues) but I now see how it wreaked havoc on my body. Wow, huge difference! I miss the relaxing effect and the taste, but not how it made me feel the next day.
    2. Sleep – I need at least 8 hrs sleep, and 9 is optimal. Any less and I never seem to recover until I take a 2 hr nap and get back to 8 hrs the next couple of nights.
    3. Food – I am not 100% faithful to this, but eating healthy, natural foods, cutting out anything processed, makes a big difference in my digestion and overall health.
    4. Weather – I cannot control the weather and I need to live where I do, but just being aware of the barometric pressure in the air, and when we have many days of one type of weather and then it changes to a different type, helps me understand why I am having a hard day. Just being aware of my body reacting to something that I cannot control, helps me feel more in control than asking that overused question, “Why do I feel so bad today?”

  31. Janzel kelly says:

    First of all, let me tell you Donna, you have helped me more than any other source😍Thank you so much..
    I was diagnosed by my GP with Fibro about 5 years ago but had severe exhaustion before that. I got so bad last year I was bed bound…I was referred to a naturopathic doctor about 4 months ago and she tested me for Lyme, babesia, and many other virus/infections. I had read your article about your own experience but was still surprised when my results came back positive for Lyme, Babesia and Epstein Barr. My doctor has started me out on botanicals…which have helped…Samento and detox kit from Hevert. I am taking Magnesium citrate 400mg plus topical….Epsom salts baths…I am out of bed yiipeeeee and have managed to go out and have more of a life…I would tell all of you that have been diagnosed with Fibromyalgia go to a naturopathic doctor who knows about environmental elements that may be the original cause of your illness. I am just at the beginning of my protocol but at least there are treatment cures and hope…you have been a godsend Donna..ps just ordered Quell

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so glad you were able to figure out you have Lyme and other infections. I think A LOT people w/ fibro probably have Lyme and don’t know it. I try to keep getting that message out w/o coming across as a crazy Lyme lady. Keep me updated on how your treatment is going. It’s a long road, but I really think we will beat this in the end.

  32. Brenda says:

    I was on suboxone for pain for a short time, but couldn’t take the side effects. It was wonderful for the pain. However, I ended up getting dysphasia ( not able to swallow ) and was dizzy with ringing in my ears. I fell a few times and felt drugged when on it, a spacey feeling. It is suppose to be 20 to 30 times stronger than morphine. I couldn’t stay on it because of these side effects. I am going to see my doctor this week about low dose naltrexone. Right now I am on nothing for pain. I really wish the suboxone had worked. It was nice to be free of pain for a short time. Has anyone else had success with soboxone or low dose naltrexone?

  33. Rebecca Edenfield says:

    Getting my borderline hypothyroidism under control has helped with the fatigue some but I still have to build in naps. I also take a probiotic, vitamin D (which was low), a magnesium, and a few turmeric capsules. I’m also trying powdered green tea dissolved into some orange juice.

  34. Christianne McCall says:

    Yoga helps me tremendously as does massage and warm water. I’d love to learn more about an Ayurvedic approach to healing.

  35. Anita Krukas says:

    Donna, I really have to give you so much credit and thanks for doing this. You’ll not hear me say bs on this, I believe you are spot on. It is so difficult to get quality health care with this diagnosis, I am so ready to be done with it, and am willing to try anything. One small ( not to me ) thing that helped a problem I had which was horrible eye pain is a supplement my Naturopath gave me made by Metagenics called SPM Active. “Specialized Pro-resolving Mediators”, which is a specially formulated fish oil made to be able to reach into tiny blood vessels. That is how it is able to help the eyes and even the gums. It has greatly improved both for me which was huge.

  36. Elsa Markus says:

    One thing that has helped me is taking D-Ribose. I take it every day. I find when I’m feeling like I have no energy it gives me a pick up, but is not a sugar high. Dr. Teitelbaum has done research on D-ribose and fibromyalgia, and has concluded that it does help patients feel some improvement.

  37. Julie E Parsons says:

    Getting off opoids has helped me but I feel I’m lucky because I found that using edible marijuana has helped the most. Now that I can control my pain level I’m working on my fatigue symptoms. One step at a time.

    • Linda P. says:

      Hi, Julie. Happy to hear you’re doing better now! Do you recommend any particular strain(s)? Thanks!

  38. Cheryl Hase says:

    I was diagnosed with fibro from my primary care. I was telling him how my headache were in a small circle on my head and areas on my body that seemed to hurt a lot. He said he thought I had fibromyalgia. My new Dr. Did some blood work and found there was a 95% chance I have connective tissue disease. I am suppose to have a rhuematology appt sometime in future. My question is can connective tissue and fibromyalgia be connected. ???

    • Donna Gregory/FedUpwithFatigue.com says:

      I have heard of people having both, but I would not say it’s a common thing that I hear very often. I was actually diagnosed w/ mixed connective tissue disorder when I was 19 years old. I no longer test positive for it. Looking back, I don’t think I had mixed connective tissue disorder. I think it was Lyme disease that was causing my ANA test to show positive. Just food for thought.

    • Aidan says:

      I was diagnosed with Fibro ME/CFS I now have Ehlers Danlos Syndrome Hypermobility diagnosed at Stanmore Royal National Orthopedic Hospital in the UK by a top Doctor in connective tissue disorders she is one of the best in the World trained by Dr. Rodney Grahame…EDS ME/CFS Fibro is now tied to multiple

      copies of the tryptase Gene found by Dr. Milners Team at the NIH/NIAID they found we have multiple copies of the tryptase Gene so have 2, 3 or 4 copies, a diagnostic blood test will come out very soon from a Houston diagnostic lab I am now trying to be tested by the NIH/NIAID hopefully soon. They call this

      (HATS) Hereditary Alpha Trytasemia Syndrome they are also now doing a Trial to see if or not this illness is tied to (MCAS) Mast Cell Activation Syndrome but there is still no proof on speculation it is tied, numerous are misdiagnosed also as (MCAS) they also say that (HATS) is not (SM) Systemic

      Mastocytosis…I have also seen some patients Positive to (SPS) Stiff Persons Syndrome with(GAD) Antibodies mine was tested it is Normal below 5 or a condition called (PERM) the Glycine Antibodies which I still have not been tested for yet! I hope the term ME/CFS & Fibro falls through the cracks I also believe

      they are just fabricated labels given out by Doctors…Also on an EDS diagnosis, one can have multiple types they call these a ‘crossover’ some have EDS3 with Vascular EDS (VEDS) even Tenascin X…Pain & Fatigue are symptoms of EDS types & last I have also seen (HFI) Hereditary Fructose Intolerance in these

      conditions it could also explain why so many react badly to Vitamins/Minerals Foods even Hospital procedures they contain Sucrose Sorbitol Fructose Fructan Sugars, Dextrose Glucose pure is Safe alternatives but I still do not know what % actually have (HFI) involved…Facebook now has 2 Groups on

      Hereditary Trytasemia some have now been tested & are Positives, anything above 8 tryptase blood is highly likely Tryptase multiple Genetic copies from each Parent at Birth, is this the ultimate Cause? Time will tell, it is likely the Cause…Some say we have been actually Poisoned by Antibiotics I still believe it

      could be plausible as well… see here http://www.floxiehope.com

    • Cheryl,

      I have both Fybro and Connective Tissue disorder. Some days its hard to know which is more painful. Put them together and you have a great day if you can get out of bed.

    • Caroline Mabbs says:

      Yes you can have both.

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