Are there any YA-YA's out there coping with fibromyalgia?? Do U wonder if maybe

Do U wonder if maybe it's something else and that your doctor has just given up on trying to figure out what your problem is?


What kinds of things did your doctor rule out before he determinedthe diagnosis?


Have you found anything that helps you deal with the inconsistency of feeling like crap from one day to the next?


Any insight or guidance is appreciated? [img]library/editor/plugins/emotions/img/smiley-laughing.gif[/img]

I too have fibromyalgia.My doctor didn't tell me what else he ruled out,but he did recommend that I get a book about it. I went to Borders and got the Idiot's GuideTo Fibromyalgia which has helped me to understand this chronic condition better. I also take a nerve pill, so I'm not dealing with an incredible amount of pain all the time. On my good days, I do as much as possible, than when I have bad days, my house doesn't look like a disaster area. Besides exercise, diet also helps, because I have IBS too. I'm retired, but before I did retire, I had to work with the company doctor, and mine, because I couldn't stay at work consistantly. That's how I ended up retiring. If there's a way to work at home, I would try to find something, mainly because of the absence issue. If you have any more questions, you have but to ask, and don't forget about the book. Good luck,suzie

Hi gals,


I'll try to keep it as simple as possible, but I do have a very long write up I can post if anyone is interested.


Basically, almost everyone with FM has what is known as the Alpha/Delta sleep disorder. This means that although we may sleep, we "pop" in and out of the highest level of sleep (Alpha), while we should be getting long waves of Delta sleep (the lowest level). Delta sleep is the kind where you fall asleep at night and hours pass without you waking up, or even being aware that time has passed. It's also the time that your body does "maintenance" - things like muscle repair, production of vital hormones and neurochemistry, etc. Of course, it'ts also when your body rests, so you have energy the next day.


The current theory is that people with FM have dysfunctional Central Nervous Systems (CNS). Researchers believe that it "idles" high (like a car engine) all the time. That's one of the reasons thatwe are so sensitive to light, loudsounds, weather and other things. Of course, all of us have different degrees of symptoms, but if yoursleep is bad enough, your CNS is probably running exceptionally high. Mine was so bad that my rheumy was concerned that I could have a siezure, so he had me wear a monitor overnight that would keep track of EEG waves. I had been awake for three days at the time, and over the night I wore the monitor I was awake for the fourth night in a row. The results of the EEG were extremely abnormal, and that's when he and my neurologiststarted trying to get me to try Xyrem.


Although, I trust both of them with my life, I resisted taking it for more than a YEAR. The reason was because it is the prescription version of GHB, aka "The Date Rape Drug". It is FDA Approved for Narcolepsy (which is very similar to the FM sleep disorder), and for Daytime Cataplexy (sleepiness). It is NOT a sleep medication, but rather a CNS depressant. I did not even want to try it because of the horror stories I had heard about criminal use, and the "stigma" of anyone knowing I was taking it.


Both of my doctors have always been far ahead of the curve. (They were using "Lyrica" ten years before it was approved for FM.) My rheumy had even done a couple of small, open label studies at Cedars-Sinai (in Beverly Hills), several years before he recommended it to me. My neuro treats narcolepsy patients, so he also had "real life" experience with it, and had started using it on some of his worst FM patients. My neuro was the one who finally convinced me to try it.


It comes in a liquid form, and tastes like dirty sea water. It hits you VERY FAST, so you take it right before you are ready to get in bed.Some people take it while they are in bed, but I've never met anyone who fell asleep within just a few minutes of taking it. The sodium content is very high, so doctors have found that you should brush your teeth after taking it to prevent loss of enamel. The "Normal Dose" is 4 GRAMS before bed, and another four GRAMS about 4 hours later. Since the half life is so short, itwears off in only a few hours. Most people need to set an alarm for the second dose. Unlike other meds, it's out of your system by morning!


My neuro believes in starting slow with ANY new medication, so I started with one GRAM (not mg), and increased it by another gram each night for four nights. Since I always keep my doctors entertained, I had the OPPOSITE reaction! I got aggitated! I stopped it right away, and called my doctors. My rheumy said, "Well, we tried." My neuro said, "Wait. This is NOT a sleep medication. Do you FEEL any different?". I did the forehead smackat that point! I had taken my son swimming with dolphins at Sea World about six weeks earlier, and the wetsuit and cold water had thrown me into a pretty bad flare (but it was SO worth it!). I realized that the flare was gone! He said, "That tells us it's helping the pain, so we just need to offset the aggitation." This was something my rheumy would never have tried, but my neuro is absolutely brilliant, and I trust him to prescribe things that aren't "typical". He had me add back the klonopin and trazadone that I had been taking, and that first night I slept for eight straight hours!


After a couple of weeks, I realized that I was feeling groggy in the mornings, so he changed the Xyrem to ONE dose of six GRAMS at bedtime, with NO second dose. That worked perfectly, and the morning grogginess went away. Within a couple of months I had more energy and less pain than I had since I got sick! Within nine months I was completely off pain medication, except for an occasional migraine. I got sick at 27, and at 42 I felt like a kid again! I was able to go to Disneyland, take my son to the park, and do things I hadn't done in years!


Xyrem is only available from one highly regulated pharmacy. I don't know if the rules are the same, but they used to require the prescribing doctor to prove he knew how to prescribe it and had patients who needed it. That would get them into the "allow prescriber" data base, and at that time, a doctor could not prescribe it unless he/she was in their database.


I have spoken to the head of the pharmacy about the aggitation, and she said that less than one percent of people who try it have this reaction. Most doctors will just give up, but my neurologist is about as tenacious as I am (and much smarter!), so he just tweaked it until it worked for me.


I have suffered from basically every symptom of FM over the years, including IBS, Sicca Syndrome, Raynaud's, severe disabling pain, the sleep disorder, weight gain, orthostatic intolerance, excessive sweating, adult acne, a dysfunctional immune system, etc... ALL of these symptoms resolved with the Xyrem. Both of my doctors, and most other researchers, believe that the key to controlling FM symptoms is getting good sleep. However, the medications that are commonly used do not depress the CNS. Some people can get good sleep with other medications, natural supplements, etc, but for those of us with moderate to severe FM sleep disorders cannot get good sleep unless our CNS's are depressed.


The biggest problem for most people is the cost. At this point, a one month supply runs anywhere from $800-$1000. I'm covered under Federal Workers' Comp since the toxic exposure that triggered my FM/CFS happened at work - and I could prove it.


The Dept of Labor is terrified of my FM doctor, so they agreed to pay for it!


Other insurances can say that it is being used "off-label", unless you are diagnosed with Cataplexy, and most people with FM DO have "excessive daytime sleepiness". You need to find a doctor who knows how Xyrem works, and is willing to work with your insurance regarding "cataplexy".


The other thing is the multi-center study that I mentioned. This is a HUGE step towards proving that FM is neurologically based, and that Xyrem is a very effective treatment. This study would be a major step towards FDA approval for FM. In that case, it would no longer be used "off-label" for FM, and prescription insurances would have to cover it as they do other prescriptions!


Another warning! As I began to heal, the six Grams I was taking became too much. I didn't know, but assumed my husband (now my EX!!!)would tell me. WRONG! We were having serious problems because of my years of illness, and he never told me that I was becoming over-medicated as I got better. There was no way I could know, because I was sleeping. I would recommend that NO ONE try it without someone they trust with them, and have someone you KNOW you can trust keep an eye on you every month or two. That way, if you start sleeping too deeply, and can't be woken up, they can tell you and your doctor can adjust your dose.


I eventually ended up taking only 1-2 Grams once at night, and I can easily skip a night with no negative effects. I've even gone off of it for more than a year with no return of symptoms. My neuro thinks that the Xyrem actually "reset" my CNS, and that's why I've been healthy for more than four years.


As far as interaction with medications for diabetes or other conditions, I don't believe there are any restrictions. The only ones that I know of are "sedating" meds, but since I reacted with aggitation, I'm tooktwo contraindicated medications with it. You can look Xyrem up on rxlist.com for any contraindications with what you're taking.


So...this is the short version...LOL! If you have any other questions, I'll try to answer them.


Hope this helps!


- julie