Question: I understand you have fibromyalgia. Can you tell me something about the disease and how it affects you

Answer: Fibromyalgia is a chronic disorder which sets off whole body musculoskeletetal pain, fatigue, flu-like symptoms, and many tender points of ropey knot like spasm in your muscles. It affects cognitive thinking and memory referred to as fibro-fog. It also causes morning stiffness and insomnia, which is the heart of the problem. It is a sleep disorder, which doesn’t allow your body to go into the rem sleep we all need to rest our muscles. It also cause ibs, intolerance to bright lights and loud noises, spatial disorientation, communication difficulties, add, headaches, tmj, changes in vision, sensitivity to changes in weather, allergies, overgrowth of yeast causing infection-but it won’t kill you, it will only make you wish you were dead ……….sometimes. Oh I forgot the chest pains. Fibro effects millions of people and it is classified with arthritis. There is no cure, only remissions or like I do work hard at keeping the demons away.

Question: When did you first realize you had fibromyalgia?

Answer: I realized in my early to late 20s that something just wasn’t right. I never had the energy level that other people seemed to get and come-by so naturally. Then my neck and upper back started to hurt; throbbing, tightening, and very painful to the touch.

At this point I started to self-medicate, diet pills where easy to get and alcohol, gave me the energy (although false energy) that I so needed to have any type of life. I was bartending then, so the crazy hours suited my self-destructive lifestyle just fine. I partied all night and slept all day. I was also bulimic, which I’m quite sure threw my whole body off chemically. So there in a nutshell you have one young woman going crazy with drugs, drinking, not eating, not exercising, working 12-14 hour shifts tending bar; I was a fibroite waiting to happen.

Question: You mentioned that you chose the first physician to treat your fibromyalgia because that physician had a flier about fibromyalgia on his wall, leading you to think he knew something about treating fibromyalgia. What happened during the time that physician treated you?

Answer: The first Dr. claimed to be a bit of an expert on fibro. I was nowhere near the state I am today during a bad flare. Oh, I had headaches everyday, and tight ropey, knots for muscles located in my neck, throat, and upper back, but the rest of the problems was latent or dormant. I think his treatment of injecting lidocaine into the muscle spasms only served to make them worse. He did say that once you inject a spasm it goes away. That was a flat out lie. Why did I allow this semi-torture to go on? For the painkillers. He never talked about treatment or exercise or diet only week after week of injections.

He finally got to the point, as i needed stronger and stronger meds that he ran scared and sent me to this other Dr. who was able to feed my growing need for strong pain-killers.

Question: You said that your original fibromyalgia physician referred you to a physician who specialized in stronger medications than he himself was comfortable prescribing. Was that specialist effective in treating your fibromyalgia?

Answer: No way. This guy also who interestingly enough was a sleep disorder specialist, gave me stronger meds. but no program of real treatment was involved; just stronger and stronger meds. Finally what happens with fibromyalgias or my sister and brother pain pals (as I like to refer to us), the body stops responding to the pain-killers so you find yourself taking the painkillers by the clock and not by the need. I became extremely scared of withdraw, and what would happen to me if I didn’t have the meds. I wasn’t getting high and they weren’t helping me. As a matter of fact, this is when I had to stop working as a teacher, because I was no longer functioning as a person. I crawled into bed and didn’t come out till that Dr. stopped treating “pain management’ and I started going to my current dr. as I refer to him as dr. sweetcheeks.

Question: What kinds and levels of pain medications have you taken?

Answer: Let’s see I started with fiorinal for headaches, darvon, vicodin, percodan, fentanyl patch, ms contin, methadone, and all different mgs of oxycontin. But when you are in a flare nothing works. The body and spine shut down. They become unable to accept opiates to ease the pain, so you are thinking your not taking enough when in reality you need to slow down the drug and drastically. Oh I forgot a little lollipop type sucking drug called actig, it is given to cancer patients and most insurance co. will not cover it for chronic pain.

Question: Were any of the pain medications effective at treating your fibromyalgia?

Answer: The cocktail I take today consists of in am 40mg of adderall to help with the fatigue, soma for spasm 3x a day at 350mg. The adderall helps my energy level because usually along with fibro he brings his pal chronic fatigue. This fatigue can be such an huge presence and stops any therapy from happening like working out, strengthening. Without the adderall just brushing my teeth is an tiring experience enough to throw me right back into the bed, with the spasms. I also take a later dose of adderall around noon. Its power or effect lasts for about 8-10 hrs. At 5:00 I take strattera for add, and at dinner I take my first dose of geodon the wonder drug. At around bedtime I take 2 20mgs of oxycontin (the only painkillers I take) and 40mg of geodon and the new one is zyprexa. Geodon and zyprexa are used to treat biopolar and a number of other mental handicaps, but for some reason it fixes the broken brain cell filter that is allowing all the pain in. It also allows sleep. My Dr. claims by 10 months from now I should be like a 25 year old or at least functioning at a much higher level. Oh, at night I also take 4 mg of xanax and many nights I still can’t sleep. The geodon has been the most effective drug because it allows for healing and not pain-killing temp. stuff. He says I’ll be able to get off the drugs when the filter that is busted is fixed and I’ll be able to handle pain like a normal person. Of-course what I found to be one of the most power fixes is acceptance, and taking responsibility for my recovery -that being trying to eat right and working out!!!!!!!!!!!!!!!!!!!!!!!

Question: What were the side effects of the pain medications?

Answer: One of the medications I didn’t mention was one called topamax. That med made the pain worse and through me into the worst flare ever. Topamax works on the brain chemistry, and this was a bad fix. Some of the others make you tired, bitchy mood swings or some cause you even worse sleeplessness.

Question: How have you been treated by pharmacists when you fill prescriptions for pain medications?

Answer: Some pharmacists treat you like a junkie, some refuse to fill your prescription – it must state “for chronic pain patient”. “For pain monitor patient” is something that the Dr. who was giving me massive doses of methadone was always guilty of forgetting to put down. I deal always with the same pharmacy now, where they know me, why I need to take these drugs and my problem. They are kind, even loving, and very compassionate. They have been very helpful. To any pain patient I always suggest that you use the same pharmacy, so you can develop a relationship.

Question: How have you been treated by emergency-room physicians when they find out about your pain medications?

Answer: The ER is the worst place a chronic pain person can find him or herself in. There they treat you like you are just looking for drugs. I demanded my records from my last visit this winter when I had pneumonia. It is mention several times about the drugs I am taking, that I was scared of withdrawal(duh), and even mentioned that my husband and I didn’t get along. The ER staff needs to be educated big time about fibromyalgia.

Question: Have you been able to find a primary care physician who was willing to treat you for non-fibromyalgia related illnesses?

Answer: Finding a good, compassionate primary has been difficult. The last one treated me like I was a leper. He wouldn’t even give me a pill prescription for a bad yeast infection from the antibiotics given to me in the hospital.

Question: What’s your impression of the way the medical profession deals with chronic pain patients?

Answer: In general the so called medical profession stinks. I am at the point where I don’t tell them about the drugs I am on.

Question: How is your health now?

Answer: My health now comes and goes, but, my good days far outweigh my bad. Six months ago I couldn’t have said that because it was only after I accepted my own responsibility for my health. When I de-shrouded the deep denial that it wasn’t going to go away, that there wasn’t a pill to make it go away, or a miracle dr. or shaman. No, the answer to my health problems with fibromyalgia and everything that came with it relied mostly on me. Sure I could have allowed myself to stay in the fog and let my world remain my bedroom or I could find the strength and higher being inside me to fight for myself and face the demons that come along with fibromyalgia.

I chose to fight for myself for my family, for the future, and for the people I can help with the support group I am organizing. I also still plan on going back to school to become a med. asst. and work with the chronically ill and maybe educated a few people along the way; including the medical community that looks at you with disdain. I need to touch the life of people, but it has to begin with me.

Question: To what do you attribute your current state of health?

Answer: I am in a better place today due to a spiritual awakening that told me to start taking part in my own recovery. I educated myself, joined alanon so I can deal with my husband’s drinking problem, which alone brings me deep stress. I work out (although the pass few weeks I’ve only done about 4 x a week-and I feel the difference in my endurance level slipping), I take supplements like malic acid, mag. All vit. B, htp10; dhea and a good strong multi vitamin. I’m a work in progress. Next on my list is to really follow through on my diet. I believe I told you I was bulimic for many years so food is an issue and I hate being controlled by anything. I believe a lot of fibroites do have this type A personality that no one can do it as good as you can so they accept way too much responsibility till the body gives in and leaves you with little choice. It is hard saying no, but sometimes we have to and sometime we have to realize it is within our right to say no.