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.