This is my journey thru and surviving Serotonin Syndrome. I am posting this on several boards.

A special note: for the Fibro board.....the place where I began my time at DS. I haven't been on the Fibro board in over a year, but I owe a debt of gratitude to that board. You see it was a post I read there about a year and a half ago that reached up through my foggy memory to the present and literally saved my life. I do not remember who wrote it. It was about Serotonin Syndrome.

I have been a chronic pain patient for 23 years, the last 8 years have been debilitating.

I need to share my story and my journey. In no way am I comparing my journey to anyone else's, but I do feel there are some cautionary warnings in it. Things we all need to be aware of.

In writing this over a period of months, I realized my story is much to long for a single post. Therefore I will place the bulk and most personal part in three journal entries for those who would like to read at your leisure.

Most have seen posts before on Serotonin Syndrome or are at some degree aware of it. I thought I was, but I didn't pay it much heed as at the time the symptoms listed resembled closely those of fibromyalgia. Over time there has been slight changes in the information on it out there. Slowly it is becoming more known. Amazingly, doctors are really not all that educated on it, if they are even aware of it.

The last eight years have been a downward spiral for me into chronic pain and fatigue with other growing health issues. (SS Part I in my journal goes through this.) I had reached a place of no hope. Facing a bedridden life of more suffering not only for me, but my family. In an effort to get a grip on my depression, I had yet another medication change. Within days, not only was I off my rocker, but physically it was as if my body was shutting down.

My DH hospitalized me at this point, fearing for my life. They proceeded to ADD yet more medication and I got worse. After 6 days my insurance had to release me. My DH was scared as I was worse. But I had had an epiphany.

In there, I had remembered a post from the fibro board here over a year and a half ago on Serotonin Syndrome. I sat us down with both our laptops and pulled up SS on mine and drugs.com interactions checker on his. We both cried then made quickly for the ER where they diagnosed me and treated me.

I was close to slipping into a coma and dying, so there was not time to titrate down off the meds, so I stopped them immediately. This was scary and unpleasant as I knew it would send me into a psychotic break and a horrid stay in the psych ward. Three months of withdrawals to go through after that, and more of recovery. (SS Part II in my journal goes into my recovery process.)

After the withdrawals and a decent start to my recovery, I discovered that I was no longer in daily debilitating pain. What? Why? My doctor and therapist and I began a three month journey to track and graph my medication journey along side my spiral into chronic pain. What we discovered was a direct correlation between the meds, changes in meds, and addition of meds to each further decline into pain I went. As well as the evidence of my current state of recovery. I still have the fibro I was diagnosed with in my teens, but it is not destroying my life like those eight years.

Side note: without trying, within 3 months of stopping the meds, I lost 52 pounds! Go figure!

But did this make sense with the definition of SS as I knew it? Most of what I looked up on it made it sound as if it was something that hit within a matter of days and could be corrected quickly with stopping meds. But 8 years with months of recovery? My doctor thought so.

Looking at everything, I was in some form of SS for that eight years. The first few years a mild state, then the next few in a moderate state, and finally a severe state the last year or so up until I hit death mode. We traced it all back to August 2004 with my first SSRI. Throughout this I learned information on SS that is not readily available.

One thing is that SS can mimic the symptoms of auto-immune diseases like RA, lupus, and MS. All of which I was diagnosed with. It can even cause the same actions in the body that show these in blood work and scans. Since being med free for 7 months, I have been retested and scanned, twice. The fist set, at 3 months med free, showed no markers for RA or lupus which it had before. The scan showed a shrinking of the lesions in my brain. The second set, at 6 months med free, again showed no markers and my brain scan is completely clear.

Another thing of import, was the effect of seemingly innocuous things mixing with the serotonin meds to double or even triple the amount of serotonin. Things like ibuprofen, or any NSAID, acetaminophen, certain muscle relaxers and other meds. Some of which we are known to take frequently without realizing the dangerous mix. Then there are even more sneaky things like stuff in our diet that also mixes to affect serotonin. Like caffeine. Taken with certain meds can double the amount of serotonin produced.How many cups of coffee did I have?

I also learned first hand the insidious behavior of some doctors to protect their butts. In going thru all my records, we discovered that often my DH and I were told one thing but another was listed in my medical records. For instance, my records from the ER that diagnosed me and saved my life, did not list SS as the diagnosis. It listed dystonia, which is a symptom of SS. My doctors that had prescribed the meds, that I had mentioned problems with to, showed no record of that. My new and current doctor as well as my lawyer, tells me this is so they and their institution would not be liable for not only making a mistake but failing to do anything about it. How many of us is this happening to?

In SS Part III of my journal, I go into my states of recovery and the things I have instituted in my life to ensure my recovery as well as a healthier life with less pain and fatigue. Things that many of you could do to help yourself. A cure? No, but it will bring some relief. My story is by no means saying anyone else in this situation., but I do feel it can hold warnings for some. It is at least worth examining.

So I am back where I started. Me and fibro. And the eight years of H E double hockey sticks? Was it the meds that made me so sick? For me, it was. I have learned new and alternative ways to deal with my fibro (in part III of journal). In no way am I saying this applies to anyone but me. But may I suggest taking use of drugs.com's interactions checker. And not only putting in meds, but over the counter meds and caffeine and energy drinks ingredients as well and see if there is a SS warning. At the very least, have a conversation with your doc. Maybe ask them what they know of SS.

I am lucky to have my life despite the failing of the medical world. I am lucky, that for me, this became an answer for a lot of my pain and quality of life. I still deal with the fibro as well as the years of damage from the meds and decline of my health. I still have flares that slow me down, but they don't put me in the bed for a week. I have most days of the week with little or no pain. I have much less fatigue, although still fight it everyday, but it isn't bone crushing and life smothering. I have gained back a lot of daily ability and functioning. I can keep up with the daily running of the house, but still cannot hold a job.

My quality of life has soared. From no hope to weekend trips to the farm to ride horses with my daughter, an activity denied me for years. I am grateful for it all. I feel an intense need to educate and get awareness out there of SS so that no one else loses years of their life like me, and to save any who could lose their life from SS.

Hope this helps someone and raises awareness.
Thanks for taking the time to read such a long post.

For the full story on my journey and how I dealt with each stage, please see the 3 journal entries in my journal.

Sending love, hugs, and comfort.
Tonna