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I Call Bullshit!

I was diagnosed with Fibromyalgia in 2010 and find this "mysterious" illness (with no test to confirm whether you have it) to be such BULLSHIT!

I used to be a busy single mom who had almost endless energy when I suddenly found myself sick with an upper respiratory illness in 2008 that would NOT go away (i caught it from my co-worker who had just gotten back from an extended medical leave and returned sick after traveling to Puerto Rico).  This appears to have been my trigger because things spiraled out of control for me after this. [So everyone is aware, I have always been a sick person (I catch everything and anything that goes around, have had chronic ear infections, plus constant stomachaches my whole life) and am generally (I hate to admit) a stressed out/worried person...however I've never been THAT sick for THAT long before.] I was put on 3 different antibiotics over the course of 6 months but nothing helped. The last thing the dr. did before I made the decision to quit my job was prescribe allergy medication. huh?

My job was extremely stressful (helped open a law office that ultimately closed after I left) but I loved what I did and felt like I found my calling. As my health deteriorated, however, I knew something was terribly wrong. Losing my job was only the 1st of many losses to come. The doctors have been basically less than sympathetic and the most useful advice I've been given is to change my diet and eliminate unhealthy foods/beverages. I also saw a chiropractor for a few months and he was able to get some symptoms under control (numbness in hands/feet, burning sensation in face nose & throat, acne, stiff neck). Another thing that has helped is modifying my behavior. Through time I came to realize my body pain was being intensified while sitting...sitting in a chair...so I've almost completely eliminated this from my daily routine. I sit when i drive but otherwise try to only sit indian style, stand, or lay in bed.  I've also quit going out anywhere public except grocery shopping or, on a rare occasion, to another person's house. If I go places, I often end up in agony later that night or the following day so I've learned it's best for me to just lay low. The less I do, the better.

I'm so angry because I feel helpless and hopeless things will ever change. This is NOT the person I wanted to be. I've read other people's stories and hear about their struggles and am convinced there is more to the Fibro story than we're being told. Could this be a new plague? Is it some kind of conspiracy? a terroristic attack? I've read that the majority of people who suffer from Fibro are female. What's the common thread? I know we women carry purses, laptops, and babies on our left side often while wearing bad shoes. Have our bodies been thrown out of alignment? Could it somehow be caused by a chemical found in a common product we all use like makeup, nailpolish, or hair dye? Could this "syndrome" somehow be to connected to sexual and/or physical abuse? Is it possible there are many more males who have it but don't complain about being "tired" or in "pain" and instead the illness rears it's ugly head in the form of mental illness/instability, suicide, or what appears to be laziness?

The questions go unanswered and, frankly, I've quit caring about finding answers too much. My focus is more on living life in a state of bliss, albeit in pain, with whatever set of circumstances I'm forced to face. It has been quite the journey and there are days, hours, moments, when I wish/pray for death but I find focusing on the here & now helps. Advil pm is another lifesaver (but I HATE taking pills, so I only use it sparingly). Eliminating caffeine helped get rid of the restless legs and no more sitting means no more back spasms. It's been tough accepting my new reality but I'm managing day by day.

Good luck to you/us in finding relief!
shylamarais shylamarais 36-40, F 17 Responses Jun 11, 2012

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I just almost fell out of my chair- You pretty much precisely described my experience with fibro! I was reading with such excitement, thinking maybe you'd found a solution. I was SuperMom, super employee, super grad student, super workout & marathon junkie, and super-everything before this. Then it's like I got knocked flat on my butt & never got up.

I pray I don't lose my job from this; we'll lose everything if that happens. But it *is* a daily struggle, where just having family over can cause a flare. I, too, think there's much more to this illness than the medical community will tell us, coupled with the fact that they don't care.
Look how much money we generate with all the MRI's, x-rays & scans, tests, blood draws, injections, treatments, therapies, AND prescription drugs. We're medical gold mines. Why would they fix us?!

I've heard of people get "cured" by going on antibiotics or allergy medication for extended periods of time at higher than normal doses...they may be on to something.
Prior to this diagnosis, I was treated for h-pylori, was exposed to mono, and did a lot of hiking which could've exposed me to Lyme -- all of these cause fibro-like symptoms. A medical journal was published blaming mycotoxins as the culprit of fibro, saying it's not fibro at all, but rather our bodies responding to the presence of these itty-bitty organisms that are smaller than anything doctors are looking for in us. Mycotoxins are eliminated by taking strong antibiotics for a long period of time. If you look into it, you might be intrigued enough to try it. I am. It would sure prove our theory that there is something more to this!

I wish you the life of bliss you're looking for; hopefully one day, without the pain. Thank you for sharing your story; it was comforting to hear of another super-determined person coming down with this crap, who also believes this is BS. I'm not the only one!

I am new to the fibromyalgia thing. My dr was not addressing pain that I was having. He does not believe in fibromyalgia. He put me hydrocodone for about 2 years. After awhile it wasn't helping. He then took me off that and put me , on tylenol 3 with codeine. I took that for another couple of years. It wasn't working. I went to a pain management clinic and they put me on oxycodone. I was on that for about 8 months. After the first couple of months I started having problems with my feet. This was october 2013. I agonized all winter long scared not knowing what was going on with my body. Finally in ,April 2014 they told me I was diagnosed last year in october with fibromyalgia. Nobody ever told me. Needless to say I found a new dr. He did a thorough testing for just about anything out there. He put me on gabapentin and , weaned me off the oxycodone. My feet have bothered me ever , since last year. I do have pain in neck, shoulders, hips, back, etc. I saw the rheumatologist yesterday. He doubled my prescription and added cymbalta. After reading possible side affects im scared to take it. My gabapentin is ,800mg a day now. I know other people who only take 300mg a day. I would really like to find a more natural way to help ease all the symptoms. I dont want to be taking 8 ,pills a day. I do take ambien to help me sleep. I used to exercise and meditate. I cant exercise like I was and meditation firget it. My mind is always everywhere. Any advice would be grateful.

has anyone tried lyrica?..its supposed to be specifically for fibro.
also keep in touch with doc, and research.
as an investor, who is heavy into biotech, i have noticed a couple of late stage studies and trials underway, so maybe a new drug in 1-3 yrs.
maybe it will be the one that works for u and gives u ur life back..
stay strong....hang on ..after all u are a god.

I take Lyrica; it does help, but there's so much more to this than just the nerve pain.
I'd love to hear more of what you have to say about these advances in biotech and what else might be on the horizon. I've read a lot about things we can do to our brains, but don't understand it deeply enough to start doing anything myself. I have tried Nuvigil, which is amazing. Sadly, my insurance won't cover it. (I almost wish I would've found that BEFORE the fibro hit me. I could've ruled the world!) But I digress... Any info you can share would be greatly appreciated.

hoping for you a day with smiles in the mist of the pain.<br />
{{{{{Hugs}}}}}

Here enjoy this. It gets deep quick. They research natural ingredients from around the world. Several Doctors not into Big Pharma.<br />
www.hsionline.com

Hi to all of you with fibromyalgia from one who has fibromyalgia. <br />
1. I've been diagnosed for at least 20 years: muscle stiffness, joint pain, burning tingly nerves, extreme fatigue, depression. I too thought fibromyalgia was a dumping ground for doctors who didn't know what else to classify my symptoms as. I'm not sure from reading your stories whether all of you see a rheumatologist, as fibromyalgia is classified in the rheumatoid field. <br />
2. My understanding is there is no blood test to confirm you have it, but there are blood tests to exclude diseases that mimic, such as lupus. A physical examination checking the tenderness of "trigger" points is a hands on approach to confirm the diagnosis as well. <br />
3. Things I've done in the past to help manage symptoms are physical therapy including water exercise, chiropractic massage, counseling. After trying antidepressants, anti-inflamatories, and meds to calm down the burning and tingly nerves I decided the meds offered me no relief. I take an over-the-counter all natural supplement called Turmeric. It really helps with the nerve pain as well as the inflammation. I also go to a pain management doctor who monitors my narcotics usage.<br />
4. I have a multitude of autoimmune diseases in addition to fibromyalgia; my body attacks itself, and I can tell you it was much easier for me to only deal with fibromyalgia. I won't bore you with all of that, since it doesn't really fit this Experience Group. <br />
5. I of all people understand your frustrations. Why me?! is one of my favs when I throw myself a pity party. I understand why the doctors have such trouble helping people. That is why I'm strongly suggesting a rheumatologist if all possible. <br />
Good luck to all of you, whatever treatment plan or plans you and your doctor decide to take. If anyone has any questions or comments feel free to write back or post on my whiteboard. I'm happy to share in more detail if anyone wants more information. And lastly, my doctors do feel fibromyalgia does fall in the autoimmune classification because it does attack healthy muscles, joints, soft tissues, and nerve endings. I hope some of what I've written helps at least one person. Good luck to all of you. debicatlover

Lots of medical experiences. Not very many in the natural path. Health food store kinda stuff. The following is my experience, what I would do and have done. And what I did.<br />
There was a time when about the time fr<x>ame you are talking about I caught this flu thing that just didn't go away. I figured after a week or two it would run its course. After 3 weeks and there seemed no improvement I had no idea what to think or do. I could not get up off the couch. I laid there for 3 months barely getting up to pee. I had no idea if I still had a job?<br />
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I did seem to be awake for about 20 minutes a day at around 90 days. I was trying to do "SOMETHING" and I used the remote and flipped on the TV and caught what I thought was an infomercial but was regular programing on natural health. Wasn't anything better on so I watched. They were on everyday of the week so I tuned in the next day and noted who and where they were on the dial.<br />
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They did start talking about things about 3 days later that sounded like what I was going through! I managed to raise an eye brow. They said if it were me I would get some "Olive Leaf Extract" in caps and I would use the ones made by the "Seagate" company. You can get them from your health food store.<br />
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Here is what they said, That when you take these you might expect a flu like symptom for about 4 or 5 days. I thought I already felt worse so I bet I don't notice. If I didn't pay attention I would not have noticed. I think you would notice if you feel better. So that part was alright. <br />
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They also said that Olive Leaf can tell the difference between your DNA and a foreign matter in your system. Even if it has blended with your DNA. When any growth has blended with your DNA your immune system will not fight it because it looks like it is part of you. The Olive Leaf knows the difference.<br />
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With that said here is what I went through. I was down for 3 months before I found out about this product. I did get some and I got 3 months worth. 90 days. Day one I took 5 caps on day two I took 4 caps on day 3 I took 3 caps and on day 4 I took 2 caps and then from then on for the balance of the 90 days worth of product I only took two per day together. At the end of the first 3 weeks I was able to return to work. At the end of the 90 days I had another side effect I was not counting on and no one said anything about it. I lost 40 pounds. No one said you would or could lose weight.<br />
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So what did I lose then? It turns out due to all the crap we are fed as the great American Diet it just full of things that we do not need or want in our system. Not only from the food we eat but is air borne as well as the water. There is no way around it. We end up with parasites that eat our nutrition instead of our body getting it leaving us week and tired and so forth. The Olive Leaf Kills these parasites that is eating us out of our life. If you find you have a sweet tooth you have this issue. When you are finished with the 90 day intake of the Olive Leaf you find you may have a much smaller sweet tooth if not lose your desire for sweets altogether. The sugars in our sodas and our food is the main course for the parasites. Remove their food source and they die. Hints why you feel a bit fluish for 4 or 5 days. The 5th or 6th day is a day you will not forget as you can not believe how good you feel.<br />
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And of course none of this is covered with insurance because it is not DRUGS! Big Pharma knows all this and makes stuff to mask symptoms to keep you coming back for more drugs and pay the Doctors and pack their wallets. They offer advice AGAINST vitamins and so forth as they do use those in some of their drugs to help it work somewhat. Some Doctors are beginning to see this and are leaning toward a more natural approach.<br />
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All Olive Leaf Is is ground up olive leaves and put in a capsule. Really simple huh? Perhaps that is why they say to offer an Olive branch as a sign of peace? All I know is it worked. My wife at the time did the same thing and lost 40 pounds as well but it took 120 days for her.<br />
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Here is something worth noting. When you run to the doctors and get antibiotics they kill indiscriminately your good flora and the bad germs or what ever, This lowers you immune system without fail. Your good Biotics needs to be replaced with a Probiotic. The kind in the refrigerator section in your health food store.<br />
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All of the above learned the hard way with a good result.

Thanks for that...i'll have to research the olive leaf. My preference is to eat whatever foods my body needs for optimum performance (versus taking pills or supplements) but I've never liked olives much and I'm not even sure if it compares.

The older I get, the more I realize what a horrible diet I had most of my life. I consumed HUGE amounts of sugar and ate so much fast food and processed crap. That was the American Way, I guess...but I think it's changing. At least, I hope anyway.

Your welcome, it is as I stated.
Myself, I preferred Black Olives on my pizza and a few other ingredients. An interesting note is I sat and chatted with the owner of Seagate. He talk some about those working for him. He was saying those who are there longer than 90 days never call in sick anymore. Even where they wash out the mixing vats the plant life outside where the water goes are the healthiest he has ever seen. Along with the employees. Nice chat it turned out to be. And VERY interesting!

I'm going to have to read up in this. Thank you nitehowl!

There are a lot of things that can make your life better.<br />
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Vitamins, echinacea, probiotics, zinc, extra vitamin c, lots of vegys (if you don't like to eat them take them in a pill form). The aforementioned will dramatically improve your immune system so you'll stop catching everything! Not a dr! Only speaking from personal experience.<br />
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Yoga works great for fibro. There are 10 minute programs out there that you wouldn't think would make a difference but yoga really does.<br />
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I get "trigger point injections" and "blocks". Getting another one on Wednesday. If I didn't do all that I have mentioned and more, I wouldn't have a life! It's taken me years to get to where I can finally have a life! I had to learn so much on my own but it turned out to be worth it.<br />
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Hope I helped, a little anyway. I suffer the same. I used to catch everything and suffer pain everyday plus fibro episodes. It takes a lot to keep this body of mine functioning but you only live once, right?

I understand and feel your frustration. I have been let down by the medical field for 4 years. I was diagnosed with fibro until it quickly spiraled into "way more than fibro" I truly believe it is a cop out diagnosis for those of us who tickle doctors egos without cut and dry symptoms. I have also often wondered if this is some conspiracy and I lean towards that answer being a resounding yes(big pharma and fda, what a joke right?). Doctors no longer have diagnostic freedom thanks to the insurance companies defining what tests can be done and drugs to prescribe. It's all crap. <br />
There has to be something to be done for all of these people suffering :( I'm so sorry you are going through this too.

I feel so bad for all of you who are suffering this terrible diease. I can't even imagine the pain you are going through. I have suffered from depression for several years, and the last med. they prescribed me is also prescribed for fibro. It is cymbalta maybe it could help. My prayers will be with you Good luck, and hang in there.

No, not just females. I was diagnosed 7 years ago and it's been rough. I used to take Lyrica but it don't help so much. I'm going to a pain clinic Monday, I used to go but I quit because I didn't want to be on narcotics and thought I could handle the pain. I also have spinal stenosis, degerative disc discease, osteosis arthuritis in both hands, carpel tunnel both wrists, and Fibromiagia. I hurt in my ankles, my knees joints, my hip joints, my shoulders, the muscles in my legs throb and ache. I could go on and on. I just can't take it anymore. Thank God I have Medicare and Medicaid, so everything is covered and I'm going for some help. I stay so weak and fatigued I feel worthless and consider suicide. So I know what you're going through and it's not just women, I've been dealing with it for 7 years now and it's about got the best of me. Hang in there and try to get put on some pain meds, just be careful not to become addicted and take as prescribed.

I know what your going through and it'sno fun. Fibro has made me a miserable human at times and I feel Ive been evicted from my once pretty productive life. Pain is so severe that my husband cant even hug me....Im on a ton of meds.

Wow I imagine this has been hard on your marriage. I hope love prevails. I can still give &amp; receive hugs so I count myself lucky (although I have other issues with hugging that I won't go into here). It has most certainly been a humbling experience. I, too, find myself getting into a miserable state of mind more frequently. It doesn't help that I'm currently homeless and bouncing around from house to couch to floor to bed. (Although it's unpleasant and somewhat depressing, i think the bouncing around is actually helping keep my mind stimulated and distracted.)

I have it too . . . yup a living hell . . . but after years of trying everything offered for the relief of fibro. the best and only thing that has helped is a med. call Savella . . . it has taken 50% of the pain away . . . I take it twice a day and I'll never go without it . . . saved me . . . everyone is different . . . I hope you find what works best for you . . . also vitamins like D3 and Super B Complex along with a type of fish oil cap. has helped along with meditation . . . good luck . . .

What I can tell you here is to look into alternative therapies for treating your psychological and physical problems. If you stay on antidepressants for a long time they WILL cause withdrawal symptoms when you get off of them, some can suddenly stop working. I know this, I'm coming off my meds because my psychiatrist overmedicated me and made things worse.<br />
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I've intensified my yoga practice which has been a huge help with the changes in brain chemistry during withdrawal. There have been articles saying it can help with fibromyalgia too, but I'd talk to a qualified teacher (and your doctor) first. The other thing I'd look into is reiki. It sounded kinda hokey at first, but they have reiki-trained nurses at trauma centers now, and it does help a lot of people. <br />
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I hope this helps.

Sure I would LOVE to do alternative therapies (i.e. acupuncture, massage) if I could afford it. Unfortunately, i'm not working and my insurance doesn't cover that type of stuff. I used to do yoga once a week (until I got sick) but now it no longer appeals to me. I still stretch and meditate on my own but will probably never take another fitness class again. I'd rather use what little energy I have in a more productive manner. As far as antidepressants go, I've weened myself off them twice before. I managed to go w/o pills for a whole year each time but the suicidal feelings were there and just kept intensifying so I really had no choice but to go back on them.

Sounds very frustrating, just don't give up.

Statistically this "illness" strikes mostly females between the ages of 20 and 50. It was only recognised after some males reported the same symptoms. There is nothing really to accurately diagnose this "illness" but the pain and "tender spots" give it away, along with what I call the "fibro fog". My mental faculties are impacted on really bad pain days, There is some link with depression but I don't know which way around the link is.Either way, it <i>is</i> a pain [no pun intended], but if you can remain active it does help.

Yes, activity keeps the mind occupied and distracted. The hard part is having a good attitude...I get really grumpy some days. I decided, when I quit my job, that I would spend my final days helping friends or family instead of working for strangers. I say "final days" because it feels like I'm slowly dying. Some days, like yesterday, I would prefer to speed up the process and just blow my brains out but I could never do that to my kids. Instead I find a way to get through the worst days. Not sure how much more I can take though.

I know the feeling. I can barely handle the pain. Not alot of good days. I was doing pretty well when I went to michigan to visit my family. My folks have a hot tub and I sure used it. Gotback home and have been miserable ever since. I was there 3 weeks. Been home 2 weeks now..

u are strong...should u ever need someone to talk to on those"worst days", let me know...i've been known to be a great person to talk to in those times

I am so sorry, and I sincerely hope you feel better, I can't help but wonder have they did a mri on you, any x-rays? <br />
Good luck and hope things get better.

Thanks momma! I have done 2 MRI's, an X-RAY, blood work, and various other procedures but nothing abnormal was found. It's frustrating to not understand why I feel so horrible or if it will ever get better but helps to know I'm not alone in this battle. I am determined to leave this world a better place no matter what the devil sends my way!

now that is a great attitude!!!!

I'm sorry for what you're going through. My sister was also prescribed meds for fibro, but I honestly believe that diagnosis was given because they couldn't find anything else wrong with her. I wish you all the best sweetie and hope that research will one day be able to answer the questions you have.

Your heartfelt sympathy is most appreciated. I'm embarrassed and ashamed in my lack of ability to provide for myself and my children as I did before but I'm trusting that our needs will be met and good things will come out of this in the end.

Does your sister have a profile on EP? If so, I would like to friend her.