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.

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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’.

Just the word Polio once made people shudder. Thank you Dr. Salk, a humble research scientist, for making it so my Grandchildren will never have to know the fear but will hear the stories of the crippling affects, iron lungs and worse. Jonas Salk would never have pitched his polio vaccine on You Tube.

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.

There are a lot of vitamins that claim they are the answer to Fibro. I have done my own research and certainly have an aggressive and unique cocktail of vitamins and minerals I take. However,  I do not take them because someone promised a cure. I take them because of my own research and trial and error on dosages. My numbers on paper (blood work) are excellent.

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:

http://www.amazon.com/Fibromyalgia-Journeys-Collection-Stories-Personal/dp/0615917887/ref=sr_1_2?s=books&ie=UTF8&qid=1395852920&sr=1-2&keywords=fibromyalgia+shelly+bolton

http://www.amazon.com/Fibromyalgia-Understanding-Journey-Shelly-Bolton/dp/0615778844/ref=sr_1_2?s=books&ie=UTF8&qid=1395852805&sr=1-2&keywords=fibromyalgia+books

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:

https://www.youtube.com/watch?v=r5yaoMjaAmE

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.

https://www.youtube.com/watch?v=2Yz6xKIi_9k&list=UUez7OOB9jAQAyRqnve1G5gg

My video about Fibromyalgia and suicide just passed five thousand views on You Tube. I am very humbled and happy that Fibromyalgia and its plight is trickling out into the world. While I made it to give HOPE to my fellow Fibromites, I also made the video to raise awareness about our day to day battle with this monster and the fact that people with Fibromyalgia have a much higher rate of suicide. I can concur. Let me just say I woke up on Saturday morning with one of the worst migraines I have ever had. I am glad we own no weapons.

Last week I took my 11th fall in six months. Many might think I have recurring falls because of the Fibro but sadly, this is not the case. If you remember me writing “The Tangible Tales” a few posts back, in which I wrote about my neck problems….. 2 disc herniation’s, stenosis, arthritis, bone spurs, kyphosis, degenerative disc, etc., it is the pressure on my spinal cord that causes these falls. This fall was bad. It was in the parking lot of Kroger and I went down with NO warning. The fall was hard. Even though I was layered in winter clothing and a thick coat, I still have scrapes and a bad knee abrasion that looks like it is getting infected. I am still quite sore, six days later. So I have pretty much been down for the count since then. I decided to do another video on Fibro from my eyes and and loosely base it on my experience. I did this video literally from a semi-lying / reclined position on my couch. For two days I got up just to do the bare minimum….shower and use the facilities. My poor husband had to cook dinner or grab Subway or pizza every night for the last week. He is a Saint!

I proudly introduce, “Fibromyalgia, What It Is Like, From My Eyes”

https://www.youtube.com/watch?v=2Yz6xKIi_9k

Until next time, K.

I am part Italian on my Mother’s side. Albeit, she was not raised by her biological Mom from age 6, the Italian blood runs deep. I am sure this does not help that while I am usually “sweet and easy going”. when I have had enough of something….. like a smug pharmacist, I blow like Mount Vesuvius. Life with Fibromyalgia and other chronic pain conditions are difficult enough, but to have a major upheaval in your life, one car to share, a husband working upwards of 50- 60+ hours a week and still fighting for your disability 38 months after applying, the last thing you need is a Pharmacist not willing to work with your overworked husband, one car family or telling you when or if you finally get to go on a trip and your refill is due in the ‘middle of a vacation/ trip’ (if that were to happen), you have to have it transferred, “ONLY OPTION!”. Excuse me? “Certain meds can only be transferred once! So I transfer it to ‘wherever’ and leave it?”.  “That is your only option” he shrugs. One thing is for certain, he has those eyes… and I have known for a long, long time……. he sees me as a ‘drug seeker’. Nothing in this world makes me more angry than to be labeled as something I simply am….. not.

I have never had any problems with any pharmacist anywhere and save for one girl at this pharmacy that I do not consider ‘overly friendly’; she is just not a ‘happy person’, everyone else there seems pleasant and respectful. I will ignore the time I walked up, heard my name, someone saw me, gave eye contact to the other employees and the conversation quickly diverted. This is what I get for adhering to a strict pain contract? It is not always easy. At 3 AM when NOTHING is helping and the entire world around you sleeps (except trash collectors in the distance…. my how sound travels). But I do it! I do pill counts…. with Paul… at least once a week. I pre count my meds out into my ‘old person pill keeper’. Doing it right simply is not enough. Most of the time, because of Paul’s hectic schedule, I simply cannot get in the exact day it expires. Many times I call in a day or two early…. I have even OVERSHOT IT because I have had pills left over. I know without a doubt that never gets noticed. Nope! Many of ‘us’ have and will be labeled as drug seekers, sooner or later.

 Respect? No. I most certainly do not have that. At least not from certain people. Now my Doctor’s ‘get me’ and ‘get it’. They know my story. They have seen the scans and test results and they know my history. In fact my pain management Doctor is ‘surprised’ I am getting the relief I am with the low doses of medication I am on. Does that sound like someone ‘pushing the envelope’ of oblivion seeking? Let me tell all well people reading this a little secret. NOTHING helps. You could take every pain pill in the world, line them up in order and give me the strongest one in line in a double or even triple dose and it will not make all the pain go away.The pain ever goes away. The intense pressure on my spine from 2 herniated discs and severe Stenosis (along with a full laundry list of other issues) along with the Fibromyalgia and  hands down, always, the pain will win. In fact when in hospital with my last three surgeries; one emergency surgery and two elective), it was the NON NARCOTIC Toradol shots that sped past my morphine pump and tapered off the ‘break through’ pain. If they could put Toradol in a patch, I am in! It is what I take at the ER every few months to break up stubborn cervical muscle spasms. No euphoria. No ‘high’. But my, what a heat seeking little wonder this mega NSAID is! If Toradol had a fan club, I would be the President!So what do you do when you are labeled or it is being insinuated that you are drug seeking? Well, you can blow like Mount Vesuvius like I did to the smug pharmacist who will not listen to a person and what their life is like and why they cannot come in on certain days. I am NOT a person to him, I am someone he can control. I have been around enough judgmental control freaks in my life to know one when I meet one. Honestly, they gave a very sweet lady pharmacist in there and if I had it my way, she would be the head pharmacist. She has a heart!
You can issue a complaint. There is a phone call in my afternoon…. waiting and ready to happen.
I suggest their immediate district manager and if they back their guy and do not listen, call the CEO of the company. I have done it many times in various instances……. both good and bad. This will usually get your somewhere…..especially if you bring in a lot of business for the store.

No matter what, however, I am now glad he knows that I know what he thinks of me. He is judging me yet does he for one moment understand my life? No. Anyone that says ‘Too bad if the script runs out…. nothing we can do’ when looking at having your first small vacation in 9 years; that is not a person with feelings. That is a person that is heartless, judgmental and worse, does not give a rats backside about the patients he serves. Honestly? I think he would do better seeking a new career. As for me, I work too hard to make sure I stay as low as I can and to the book on my meds to have someone like him label me. Let the process of ball rolling begin. I am so done with people like him! Karma….. karma is a lovely lady and someday he will need compassion and understanding and find no one wants to extend it to him.

If you have not yet checked out my You Tube Video on Suicide Awareness for Fibromyalgia, here is the link!

https://www.youtube.com/watch?v=lzCqzSvUch8

Until next time, K.

If someone were to come to me today, tell me they were newly diagnosed with Fibromyalgia and ask me to offer them a few pieces of pertinent information, one of the most important bits of advice I would offer is that it is imperative with this condition to have your “Medical Dream Team” in place. Fibromyalgia is not something you have and eventually savor in recovery. Until a cure is found, unfortunately Fibromyalgia is a life sentence. This means the Fibro warrior will be seeing at least two and probably closer to four Doctors on a somewhat regular basis. With this team of Physicians, we need several behaviors and practices to be in place. As with anything, I would suggest starting from scratch and building up. The first thing the Fibromite needs is a good:

• Primary care Physician: This can be a Family Practice, General Practitioner or Internist. Because I have so many other health issues, I see an Internist. Nonetheless, if you have a good Family or General Practice Doctor, there is no need to run and change if you have a half dozen other fires that need stomping on a regular basis. As they say, “If it is not broke, do not fix it”. On the other hand, if you are less than pleased with your ‘home Doctor’ it might be time to start inquiring. My primary care physician is amazing. He is kind, helpful, listens, extremely knowledgeable, spends time with his patients and the thing I respect most in a Doctor, if he is not 150% sure about something, he will go look it up and / or inquire further. That is not a sign of weakness, that is a sign of a Doctor wanting to get it right! Doctors for the most part are fabulous and smart. However, no matter how good any of us are at our craft, we all have to look things up from time to time. Many times your Primary Care Physician will be the one to refer you to a specialist. So this is one we all want to get right! You may have to go through a few bad apples before finding the golden, sweet and juicy one. But once you do, you will be confident that your Doctor has your back.

• Search! Search! Search!: Once the time comes to see a Pain Management Specialist and other various Specialists, The Fibromite will again want to look for the cream of the crop. There are a lot of crappy Doctors out there. Trust me! Be honest with your Primary Care Physician. Tell him or her that you may need to go through a few Doctors before finding the right one. Get him or her on the same page so they understand that if you do not like the first specialist, you are not staying and will need a 2nd or even 3rd referral. You need to be happy, confident and relaxed with your medical team.  You may have to drive to another city. I grew up 1 1/2 hours north of Los Angeles. The city I grew up in was by no means small. However, we were known for getting all the LA and San Francisco ‘rejects’ in the Doctor community. I myself was diagnosed with Fibro at the Scripps Institute near San Diego, a three hour drive from my hometown. I now live in a medium sized city about 1/2 way between Washington DC and Charlotte NC. There are good Doctors here, and most know who the good vs. the not so good are. Nonetheless, you also have to click with your Doctor. Adding that variable can make finding the right Doctor tricky. We have many people here that drive in from West Virginia and the rural areas. We also have people here drive 1 1/2 hours to UVA to the north and 2 hours south to Duke and Chapel Hill, both in North Carolina. Do not settle!

• Be Open, Be Honest: Once you have your team of Doctors and practitioners in place, it is imperative that you be open and honest with them. This is especially true with Pain Management. Pain Management Doctors are under immense pressure from the Drug Enforcement Administration (DEA) to follow extraordinarily strict guidelines. Missing any one of these whether by accident or ‘bending the rules’ could strike them of their license to practice medicine, or worse, in an instant. I had  a horrible Pain Management Doctor until last summer. It was not until he bullied me into signing a Psychiatric Release by lying to me that I took action. Knowing I had 2 months of medication…… the primary medication I had been begging to be changed for months as it was much stronger than I wanted and not used as standard pain relief for any condition, that I then saw my Primary Care Physician. I explained everything and he proceeded to set me set up with a new Pain Management Doctor. My new specialist is wonderful. He is everything my Primary Care Doctor is: caring, respectful and does not ever leave that room until every concern I have has been addressed. I have learned more about my neck condition in the last 6 months then I have in the last 1 1/2 years!  I, however,  must be open and honest. For instance, I have to go to the ER every few months because of a muscle spasm. I am able to not jeopardize my pain contract (I refuse opiates at the ER) and instead am able to take a prescription NSAID called Toradal (via shot only for me, of course), and a small amount of valium for just a day or two which serves to relax the spasm. This serves to ‘break it up’. My Pain Management Doctor, knowing how bad my neck issues are, has given his blessings to this protocol. We must be open and honest. This is how we earn a Doctor’s respect and they in turn want to further champion for us!
• Champion For Yourself! Never Settle!: If you truly feel your Doctor at any level of your ‘team’ is less than their best, do not settle! I was diagnosed with Fibromyalgia in the spring of 1996. I have since lived in three different states and seen more Doctors than I can count. I have seen bad….. oh have I seen bad. I have seen mediocre and honestly, these are usually Doctors that want to help but don’t know enough about Fibromyalgia to know what to do. It does not make them a bad Doctor, it simply means Fibro is not their specialty. Would your take your broken transmission to a brake shop? The brake team would do an excellent job of repairing your brakes and while they might know a bit about transmissions, calling them ‘bad mechanics’ because they don’t know what to do about the transmission problem is highly unfair. As stated, my own Primary Care Doctor has said he is not an ‘expert’ on Fibro and does not understand ‘how’ it is caused but he knows it is very REAL. You may go through 1/2 a dozen Doctors and end up traveling to the nearest big city. That is OK! I would travel for my medical ‘dream team’ I have in place. There is not a one that I would replace for anything.

There are many things of great importance to those with Fibromyalgia. It goes without saying that building that medical dream team is at the top of the list. Without good, caring, respectful and receptive Doctors and practitioners who care about our well being and are passionate about helping their patients achieve maximum quality of life, Fibro patients will be unheard and over or under medicated. There are so many treatments that involve using medications that do not ‘drug’ the patient up in tandem with such things as nerve blocks, trigger point injections and many other things. Also the latest meds such as Savella (I am the poster girl and biggest fan for this med!), Lyrica and Cymbalta, we are getting there. Having that good, solid connection with an excellent health care provider is a huge part of this battle. Never settle for less than what you deserve.

I would like to dedicate this post to my medical ‘dream team’, Dr Mark Schleupner, Internist;  Dr Cyris Bakhit, Pain Management; Dr Richard Leggett, Psychiatrist; Dr Mark Gustafson, Gynecologist; and my dentist….the sweetest person on earth, Dr Nathan Stephens DDS, yes, 2013 goes down as the year I got my medical dream team, finally. But you know the saying, ‘you have to kiss a lot of frogs before you get the prince’. 

Honorable Mention to:  Dr. A. Reif Kessler, Surgeon, who saved my life during an emergency surgery in July 2011. That was one tough undertaking and I do not know if Dr Kessler will ever know how grateful I am that he is the one who took the 3 AM phone call from Lewis Gale ER that they had a very dire case that needed immediate surgery.

Make 2014 the year you find your medical dream team.  Do not settle for less. You are worth it! Until next time, K.