The Patient Voice- Fibromyalgia member Becca shares her story

Posted May 28th, 2014 by

 

What does sharing about health experiences and donating #dataforgood mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca

If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.


21 Comments

  1. I have had Fibromyalgia for over 20 yrs, I diagnosed myself after reading an article in Reader’s Digest, they didn’t even have a name for it before that!!!! I have recently gotten away from a lot of dairy products & the pain has let up 90% to what it was!! I have Neuropathy in my toes bad, take meds for that, it helps some but not entirely!! 3 discs in my lower back are deteriorating, I get epidurals for that pain, both knees are week, have had surgery in both knees, a Neuroma in my foot that I need surgery on but won’t do that again. fatigue, can’t sleep w/o sleeping pills. I guess it all comes with my age of 68. I’m just thankful that it’s nothing more serious!!!! I try to stay positive & pray everyday! How can I expect to be healed at my age if I have abused my body by carrying extra weight & bad eating habits!!! I only have myself to blame!!!

  2. Sherry, you don’t only have yourself to blame. You have classic symptoms of what may turn out to be chronic mercury poisoning, and/or chronic Lyme disease. I recovered at 58 from 20+ years of fibromyalgia, mystery symptoms, and a year of escalating medical misery in which the wheels came off the bus. You can get healthier again. In fact, I have recovered the health I had 25 years ago, which is absolutely amazing.

    My recovery journey began when one of the doctors outside of my health plan heard a presentation at a conference that symptoms like mine could be caused by reactivity to dental materials. Mind blowing. At first I was incredulous. Then I spoke with patients he had worked with all around the country with symptoms like mine, who recovered. They were written up in case report journals, which nobody ever reads, and are ignored by most medical professionals, pharmaceutical companies, chronic disease associations, government agencies, and patients.

    So began my journey into the alternate, but most helpful universe of biologic dentists (which I’d never heard of) and functional medicine specialists, which I immersed myself in to learn more, expanding into the fields of genetics, toxicology, biocompatibility, and regulatory science. Not bad for an economist, with no real scientific background or training (except in my gene pool).

    As I got healthier, I made a commitment to learn enough along this journey to engage, share and help others, and to unite with others to address the gaps in policy and regulations that allow this to happen in the United States – overlooking some of the biggest source of toxins that harm people with common genetic susceptibilities.

    The factors triggering inflammation and escalating multisystemic chronic disease in my case were mercury off-gassing from dental amalgam “silver” fillings, compounded by Lyme not sufficiently treated, and mold exposure from a one week visit to a FL condo that was not remediated properly. It turns out I have genetic susceptibilities to these toxins due to glitches in something called the methylation pathway, and a glitch in my immune system so I don’t fight things off well. I knew about the latter from life history, not about the former.

    Everyone with any health issues whatsoever should look into these factors, and all researchers and pharmaceutical companies should look incorporate them. Instead of just focusing on patented silver bullets to alleviate symptoms, first screen patients systematically for genetic glitches and for toxins, and identify and separate out the toxins that are not good for us. This must be done safely, when a regular dentist drills out old amalgam with only a dental dam, it increases one’s exposure and bioburden of neurotoxic mercury.

    Why don’t we hear about this from the ADA and our dentists? It turns out the ADA had patents on it, and put a gag order on dentists in the ADA Code of Ethics. The FDA? NIH? I’ve written an Issue Paper, For Good Health, Integrated Whole Body Care, and Making Chronic Diseases History, on the science, economics and regulations, with recommendations, posted at http://www.hiddenriverhealthchallenge.blogspot.com.

    It turns out we don’t just need to be advocates for our own health, but advocates for others.

  3. Most people I know who have strugged with Fibro do in any case turn out to have adrenal and thyroid problems, the majority, this is why there is a world wide drive to improve the testing, allow the banding to be less narrow and also give people a choice of treatments, not just big pharma synthetics. I do not know one person with Fibrio who has not got better from their ME if their Thyroid is brought into line.

  4. I love this website but unf don’t visit it often enough….When I do it gives me such consolation & hope..
    Thank you. .

  5. My step mother has fibromyalgia and I know some of the symptoms are unbearable sometimes, and taking pain killers has no effect, she has now got to the point where she has lost a lot of her mobility as it is painful to walk short distances, she has also symptoms of depression due to the pain and lack of mobility, her condition seems to be stable at the moment, but this seems to fluctuate, hoping that you are able to find some relief from your symptoms.

  6. @Laura Henze Russell-
    I CONCUR!!!!! I just turned 50 & am devoting the rest of my life in sharing what I’ve learned about the truth behind getting diagnosed w/any of the following; fibromyalgia, CFS/ME, MS, Parkinson’s, Alzheimers, RA, ALS, Lupus, and/or any of the sclerosis; these diseases are caused by a combination of metals toxicity & pathogens (bacterial, parasitic, viral)
    In the 90’s I was told by 4 MD’s to just take Pepcid, & then prilosec/nexium for my stomach pain & advil for my migraines. After years of Dr appts I was finally told I had CFS/fibromyalgia. In 2012 when chronic pain turned acute; I had my gall bladder removed and that was 4 years AFTER being told to go gluten free & diary free and that ALL my joint pain/stiffness, muscle aches, pinpricks, fatigue, sinus pain, headaches, vertigo/balance issues, ringing ears, tingling arms, brain fog, ADD, shortness of breath w/asthma-I was told would all go away w/diet change and correcting Vitamin/mineral deficiency. Well, 4 years of strict diet and supplements did NOT solve health issues (it helped somewhat)! And then as I neared menopause, my MD, who claims to be ‘integrative’, just focused on attributing all my symptoms on menopause and hypothyroidism (which were NEW symptoms)!!!

    June of this year, I finally found an awesome holistic ND who FIRST discussed & tested me for environmental toxins and pathogens. Proper testing revealed HIGH levels of mercury, lead, & aluminum! It’s due to having a broken thermometer in my purse in 1983, getting a mouth full of ‘silver’fillings also in 1984 & then in 2006, having an old filling drilled out; that was the last straw that broke this camels back. The metal toxicity suppressed my immune system=the inability to fight off bacterium & virals became reactivated!!! I am being treated for Lyme co infections and will then get chelation treatment. I’m SO looking forward to feeling like a normal human being again vs feeling like an alien is inside roaming around!

  7. Sharing personal information to others with the same health problem can aid them in living day to day in a much better atmosphere.

  8. I’m still not sure that fibromyalgia actually exists as an independent pathology. It may be part of a complex of rheumatic symtomology engendered by various auto-immune factors. It is a very convenient fall back for internists and other primary care providers when other diagnoses prove untenable. When the middle age man or woman comes in with “I have severe muscle pain or joint pain” and doesn’t have a readily diagnosable condition the ultimate universal catch all muscle condition fibromyalgia normally comes to the fore. Just like many other diseases such as type 2 diabetes that are caused by or aggravated by lifestyle choices there is no cure for it. After one has been a fattening hog (like me) for years, the body simply rebels at the stress that morbid obesity, cigarette smoking, hard drinking, recreational drugs and other no-no’s place on the body’s systems. If one doesn’t overeat, smoke or use tobacco, drink excess alchohol or use recreational drugs one is not normally bothered by the pernicious chronic wasting diseases. But if one is 100 lbs. overweight, smokes like a chimney, drinks a six pack or more of beer a day or enjoys his daily dose of grass, cocaine, herion, or crystal meth he or she is doomed to have a chronic disease of one type or the other some diagnosable like diabetes mellitus or undiagnosable like fabricated myalgia.

  9. So good to hear other people like me, I don’t feel so pathetic and useless knowing it’s not just me.changed my diet and taking magnesium supplements,thanks to the people who thought of this blog.please keep it up.will let you know how I get on.

  10. I have suffered with Chronic Pain, and been diagnosed with Fibromyalgia 25 years ago, and recently again at a Pain Clinic by a Doctor specialising in Pain.

    I live in Australia and we are always watching research and development in the U.S. in regards to treatment of FM. I follow one blog of a person with Fibromyalgia based here who feeds lots of information, but suffers greatly.

    I do think a small percentage of Pain Suffers diagnosed with FM are wrongly done so, but all I can add is the more people stand up and say it is real, it needs to be researched ongoing, the better off we Fibromyalgia suffers will be.

    My condition, and I will add that I am Male, is disabling. I cannot work but do look at the small things that are so wonderful each day like being able to talk, See, and simply see Beauty in things.
    Peace anf Love to all who are suffering, may there be joy in whatever way you can achieve.

  11. I am also going to have my silver amalgam fillings removed, next week. My immune system is weakening, I am sensitive now to any metal other than gold, I cannot use certain fragranced products on my skin, I have respiratory allergies on top of a Fibro diagnosis, degenerative disc disease, scoliosis, stenosis of my c-spine and arthritis of most of my joints. Many liked to pin this all on mental illness, as I have PTSD but you can’t argue with 3D imaging. There are still those in my family who ask me if I can’t get a part time job, at least. I haven’t worked for 14 years now….and I am getting worse, no better. I have been raising my kids alone and hope my energy? What little is left-can hold out 5 more years, til my youngest is 16. We make the best of it but I hope I improve by removing those fillings.

  12. I first started having problems with joint pains In my hands and feet when I was 35 yrs. old. My hands were swollen and so cold and painful, and at the time my babies were small and demanding all my attention. I finally went to my primary care Dr. and she sent me to UMB to a rheumy. He said I had RA. and started Gold treatments right away. I can’t remember how many wks. I took the shots but they did not help. Later , I think a yr. another Dr. diagnose me with fibromyalgia and I had neuropathy I was in so much pain especially before and during rain. When I was 45 I was diagnose with ALS thank God, 2 yrs. later I was told that instead of ALS I have PLS this is very painful and with the fibro. it is double painful. I am 61 now and I just pray that I will not live to be a burden on my children. I do have feelings in my mouth and I have had Gum surgery with 1 implant I am going to ask my Neuro. about this in 2 wks.

  13. Thank Laura for all your work into Fibromalgia .
    Yrs ago, I went to see a Dr. Stephanie Cave in Baton Rouge, La. She is
    holistick Dr. ? We live in Central La. Rural are. She did not use BCBS, it was out of pocket $$$.
    She did a battery of test. &
    I had mercury posin !
    I did go to a densit for removing Ally fillings. Dr. Steven Evans didmy work in Bullard, TX, was a 6 hr. Drive
    For us. Cost us in 2 yrs
    About $50,000.00.y bridges
    kepted breaking so about a yr. ago I had implants place Dr Smith in Laf., La.
    I have to say I never had a headache after fillings were removed!
    Thanks for all your information .

  14. How envious I am of those that can live some sort of normal life even with fibro. The different degrees and the different effects as well as added ailments all part of the overall factor that says, I can deal with this, make for as many answers from all of us while still supporting those we know are facing so much, just as we are, even though not the same.

    My vitamin B12, Magnesium and then Vit D all depleted. All having effect on pain levels. Oddly even replacing them the pain continues of Fibro. Chronic Back pain that never ever seems to have a moment off. Knee pain, no you don’t have arthritis, but why cant I walk without severe pain that wont let me walk more then a block when I use to walk 2 hours a day. Thyroid cancer, why not? So now on drugs to bring it back to normal , now that gone, but not working. NOTHING WORKS and if it does its short lived. Just lie down and relax you will feel better, sleep apnea and a machine that I feel like a torture device. Lyrica didn’t make me dance around the room, Cymbalta didn’t give me my life back, Morphine dulls pain to live but doesn’t last, so short lived. Morphine for crying out loud, how much more? I for one envy anyone able to do anything with fibro but honestly I feel more for those like me who face each day with a strength they never knew they could , just to look as normal as everyone says we do. Wonder if we wore a ribbon that said I am in great pain would anyone notice. Would anyone walk for us an our cause. In Canada it seems few would notice so thus we say it every time asked, I am fine. How sad is that? I was referred to a program at southgate hospital in New Market Ontario. They won an award the day we started the class. It seems even the doctors don’t get it. They filled us with knowledge on fibro that didn’t help us one little bit more then reading an article or looking at the web and they got an award. I paid for a booklet that had nothing in it any more then what they said and that was useless money spent and time getting there, painful time hoping for answers and got nothing. Reminder they got an award for their advances in Fibromyalgia. I knew more coming in then they told me the entire 8 week program. WE NEED HELP . We need people offering answers not lecturing on what it is and the connection which I feel is very little between arthritis and fibromyalgia. They are two separate things people. Maybe some have connections but think it is by the fault not the disease. So much to learn, so few able to tell it. A woman in first class after they outlined the class said how is this suppose to help me, im not here to learn about it, I need to be helped. She walked out and never returned much like most of the class as it dwindled to maybe 12 in the end. THEY DONT GET IT. Just because people have the disease and get referred to them doesn’t mean they know anything. Enough about that just please take knowledge not to go to that class if offered to you in Ontario Canada. They don’t get it.

  15. Have you been tested for Lyme and co-infections? Many of these symptoms, including diagnoses of fibromyalgia, CFS/ME, MS, Parkinson’s, Alzheimers, RA, ALS, Lupus, etc. can be traced back to an underlying infection of borrelia, bartonella, babesia, etc. That’s what happened to me – suspected MS/Fibro for 20+ years then confirmed Lyme, Bart, Erlichia. Three years and the right two physicians with me later and I’m improving significantly.

  16. Got my history of pain in childhood, where my mother said that she felt pain in the legs that are not soothed with warm blankets. Years passed and I dedicated myself to work intensively fed me ill and slept badly, was a workaholic. Where my employers took the best they could for me. The food was almost put in my mouth, drank too much coffee, and even as a law professor, corrected proofs until the early morning, in addition to other responsibilities in university campus. Moved me three times a week at a distance of 200 kilometers, getting to sleep in my house at dawn. My pains that crippled started at 32, now I have 48 years. How many times have I heard misdiagnosis and hopes, sore treatments and experiments that did not work. Parallel suffer from migraines very strong, with several bouts of aura in each episode accompanied by vomiting and diarrhea arriving there last 40 days.
    I have been diagnosed with fibromyalgia, suspected of Fabri syndrome with exams in Germany that closed the diagnosis, such as Parkinson’s, neuromuscular degeneration, multiple sclerosis, psychological problems, demyelination in the spinal cord etc … these diagnoses that were never proven. I took almost all known drugs and never answered any of them. I take morphine for ten years (currently 10 mg daily), but pain does not decrease. In addition to medications for migraine in abusive doses.

  17. I have had Fibromyalgia since I was five years old. I used to sleep in a hot tub at night to decrease the pain so I could go to school the next day. I was told it was growing pains. I mostly ignored the symptoms until I couldn’t anymore. I was officially diagnosed when I was 49. I had worked full time and sometimes two jobs to help raise my children. When I hit the wall, I hit hard. I couldn’t read for three years and also had problems with communication and finding words. Given long enough I could put the words together and understand them. I would take my daughter shopping and forget how to get home. I was often in bed for weeks at a time if I went over my limit.

    However, if I had not been sick, I would not have been able to care for my husband when he became ill. He would have had to go to a nursing home and die in a strange environment. He had Alzheimer’s and Parkinson’s and Prostate Cancer. I cared for him for five years. The last two were very intense. I am thankful for my Fibromyalgia for this time I had with him.

    I went back to work after ten years of being on disability but could only work full time for a year before the pace became too much for me. When I quit they put two nurses doing what I did. I went back prn and worked three hours an evening so I wouldn’t make too much for my disability. I then was hired as a geriatric care manager doing in home education full time. I loved my job but I got whooping cough last year and had to quit. I have been recouperating for a year now. I finally cut my gabapentin to one a day and feel human again.

    There is no magic pill for Fibro. Each of us have a path to travel. It is a journey of the soul, mind and body. I have found that alternative therapies has helped me the most with Healing Touch and other energy work, massage, chiropractor and acupuncture. The medications are guiafenisen and meripax and excedrin migraine. However, the aspirin in the excedrin negates the guiafenisen so I time them twelve hours apart. I am just now getting to exercise like I was last year. It makes a difference but one has to start slowly. The effects of the steroids for the whooping cough caused me to gain thirty five pounds. I use meditation for pain control and art therapy. My biggest problem now is fatigue.

    I baby sit my new grandson two days a week now and I work prn when I feel like it. I have met a wonderful man who takes great care of me and loves me very much. I have two wonderful children who are married and live close by. I am indeed very blessed.

  18. I am who I am another Chronic pain suffer..it is what it is to keep trying to figure out why we get old..I cannot remember much to day seizures and stokes and my dedication may be some of the reason I just cannot understand why I have to understand why I cannot understand why..

  19. I visited at least 20 doctors over a two year period because of the severe pain in all areas of my body. I was told time and time again that I needed to go to physical therapy for at least three times a day since I had had three spinal fusions and the pain was caused by the titanium rod in my neck. After a year of physical therapy, dry needling, acupuncture, etc., the pain persisted and had gotten worse.
    Finally, I told my internist that I had not slept for more than two hours a night because of the pain. She referred me to the hospital’s Pain Management Center. Upon walking into the pain center, the doctor listened to my symptoms and told me that I had ‘fibromyalgia.’ I simply couldn’t believe that he told me his diagnosis within ten minutes and I had spent $9,000 in co-pays, MRIs, Catscans, etc. – no one else had told me that this disease had literally taken over my life.
    After taking a sleep medication for three weeks, I began taking an online class in Chronic Pain and have been able to walk better, perform household chores and feel better than I have in fifteen years! I now attend church at least twice a month, changed my eating habits and have stopped taking three meds that I took prior to the pain clinic’s diagnosis.
    Thanks for this website – help is on the way!
    Thanks for this website. We will

  20. I love your site and blogs. I know so many people now that have Fibro and it will be good to understand through your blog about the disease and tips to pass along. My step-daughter was just diagnosed with stress myalgia. Bright Blessings

  21. Angela Feb 21, 2016
    This all sounds so familiar to me. I am 49 years old and so far have high blood pressure, thyroid, MS , chronic kidney disease stage 3, Had diabetes and probably do again. Bi polar have adhd, vertigo, already been on aliztimers medicaton. Can’t say the words that I want to come out of my mouth. Don’t remember most of the time to pay my bills or to take my medications or double dose meds. Let’s not forget that also have sleep apnea and probably more stuff i have forgotten. But I went to a new Rheumatology Dr. that took one look at me and said i can tell you are in terrible pain and I had to use my cane to stand up so he did a full blood panel on me. I thought this time I will get the help i need. Well guess what he called and said i did not have RA so take more tramadol and that was the end of that.

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