Before I start my post, I wanted to let my readers know that if you have had problems loading any of my videos on YouTube to your tablet or iPad, it is YouTube being ridiculous. Yes, I know songs have copyrights, but I am using it to tell a story…. not make money and further more, it is ‘free advertising’ for the song! I am considering alternatives to future videos.. However, as far as I know, the video is coming up fine on laptops and desktop computers.The problem seems to be with tablets and iPads. Now, on with the post.
There is no cure for Fibromyalgia. Full Stop. There are treatments; medications, natural, holistic and everything in between. I want to make it clear, I am not here to discourage any treatment that is proving beneficial be it through a chiropractor, diet, vitamin cocktail, pool / physical therapy or any other program that helps your Fibro. What helps you may not work for me and vice versa. I don’t like Lyrica…. never did…. but many people do. I love Savella and it has “improved” my situation although it is all relative. I still hurt all the time. Savella has helped to improve it from intolerable to tolerable, not manageable. I will take anything I can get! I have numerous other health conditions so sadly, I am still fully disabled. I hope and pray to see a cure in my lifetime. Any Tom, James or Henrietta that pitches he or she has all the answers, is looking for one thing; MONEY! This is especially true on YouTube. Ask yourself this question: Would Jonas Salk, the Doctor who created the polio vaccine have needed to advertise on YouTube? Would he take his magic vaccine in a covered wagon and give a big speech? When AIDS was downgraded from a terminal illness to a chronic, manageable illness due to the cocktail that can render someone with HIV down to the point the virus is almost undetectable in blood tests, did the researchers of this protocol advertise their miracle or drive from city to city with a microphone announcing to crowds they had the magic pills? Of course not. Always, Always ask yourself that before leaping to the person that says they have ‘the answer’.
So what does the Fibromite do who wants to veer outside medication alone? Here are my suggestions:
1. If you see it advertised on YouTube, Facebook or any other type of social media, really research whatever angle the person is pitching. I watched one guy on YouTube and could only make it through 1/2 the video. He was just talking. He was a used car salesman taking advantage of those in pain who would do anything to make it stop. He started talking about yaks or elk or some like animal and the percentage of their cancer rate. Nothing made sense. It was as if I was Alice and had just walked through the looking glass. Be very leery of those pitching a ‘cure’ because there simply is not one. Always ask: Would Jonas Salk be doing this with his polio vaccine?
2. Do your own research. I have had Fibro for nearly 20 years. I was researching it before the internet and now I continue. I can cite, verbatim, statistics and information about Fibro. I actually had the attention and even slight captivation of a Medical Student who is in an internship program from Virginia Tech. He sat and listened intently and I told him, in great detail, about my conditions (Fibro and neck damage). The same holds true for the last ER Doctor I saw. I think he was stunned that I had an answer, without hesitation, for every question he threw at me. If I know anything, I know Fibro. I also know many people make tons of money on the vulnerability of Fibromites. It infuriates me. Again, while one can go into a Fibro remission (Many years ago I want into Fibro remission for 6 wonderful months), there simply is no cure.
3. Watch out when buying books. There are many Fibro books out there. I am certainly not saying do not read books, actually quite the opposite. The thing to watch out for is a book claiming to cure Fibro. Knowledge brings empowerment and I encourage reading Fibro books however read with caution! The books by Fibromites about their journey: Fabulous! There is comfort in knowing you are not alone….. that you are indeed not the only one in pain, unable to sleep, having IBS so bad it feels as if your insides are getting ripped out and knowing that you are not the only one labeled as ‘attention seeking’, ‘faking it’ or even worse, ‘trying to seek drugs’. The books I caution my fellow Fibromites about are the books that state, “I have the answer”. At the risk of repeating myself, would Jonas Salk have written a book about his polio vaccine? No! My advice on books: read with caution. Be guarded. In the words of my late college mentor, “Never buy anything lock, stock and barrel”.
Books! So many books! These are just a few and I am not saying they are good, bad or anything in between. I am just giving an example of the multitude of books available. Remember, there is no cure but there are proven and effective treatments. Those are the ones your Doctor is going to know about. I would be more inclined to buy a book written by a Fibromite who knows what hell it is living with this condition. That is my preference. You are getting it from the source and not some person with an angle, trying to make money.
Here are two books I can highly recommend. They do not offer a ‘cure’, but one offers stories of fellow warriors and the path they have forged while the other offers sound advice from a fellow Fibromite:
4. By all means run with what works! If nerve blocks, eating certain foods, taking certain vitamins, seeing a chiropractor, going to the gym for warm pool therapy or low impact workouts, meditation or any of a number of other alternate treatments help, keep it up! I do not treat my fibro with pills alone. For instance, I do not eat processed foods. I take super doses of iodine for my Hashimoto’s hypothyroidism, I pray…. throughout my day…. talking to God often. I meditate. My hobbies, writing, paper-crafts and the paranormal (from a Godly stance…. no occult here)…. are my passions. I allow myself 1 hour of daytime TV (my guilty pleasure), even if I cannot get up off the couch for the day. I refuse to let my brain go to TV mush. My last video on YouTube was done in a semi reclined position with my laptop on my abdomen. I am *always* looking for the latest advances. In other words Doctors as well as Fibromyalgia veterans would encourage the Fibromite to seek other avenues besides meds alone. However, do not seek a ‘miracle cure’ because one simply does not exist.
Fibromyalgia is cruel. The pain is relentless, the fatigue is a force not to be reckoned with, the co-conditions such as IBS, insomnia, sensory overload, migraines, brain fog, etc are overwhelming. If you have tangible issues with Fibro such as Spine damage, Diabetes, etc., it compounds the effects even more. I have been up in the long hours of the early morning, pacing the floor with pain, as the rest of the world sleeps soundly. Everything I do from doing a load of laundry to driving to the Doctor takes five times the effort of the average person. I know the desperation of just wanting it to stop. I do not remember what normal feels like. I have not slept all night in a bed, laying flat, all night, since 2011. Therefore I very much understand wanting to believe in these ‘miracle cures’ but the truth is, they simply are ploys on the part of the ‘inventor’ to make money. They are using a debilitating illness for their gain. I am not saying there are not nuggets of good advice with various ‘experts’, however pick and choose wisely and never spend a load of money on what is really glorified snake oil. A good medical team including Doctors and Practitioners who went to school for many years and had intensive training beyond their schooling, taking your medications as directed, a good diet, low impact exercise and more than anything knowledge are your best front line defenses in dealing with this monster. Do not make these dodgy dealers richer, empower yourself and find the path that best suits you!
I would like to share this video. It really hits home for us. It touched my heart beyond words. I think it should be the World Wide Fibro song:
Here is the link to my latest video. As stated earlier, it likely will not work on an ipad or tablet but should work on a laptop or desktop.