Lost in a Sea of Information

Hi all... I'm brand new to HW. My name is Rachel. Lot of words for my first post. Sorry

My GP is calling this Fibromyalgia and started me on Savella. Seems like such a broad diagnosis... I have a history of Autoimmune Issues. At age 7, I had Rheumatoid Arthritis, Rheumatic Fever and Double Pneumonia. All right after a traumatic event triggered memories of an extremely traumatic event from 2 years prior.

So... I get the whole mind-body connection and the gravity of how major stress can effect health and well-being. 

Seven years ago, I broke my wrist and suffered nerve damage. From that, I ended up with what was diagnosed as RSD (Reflex Sympathetic Dystrophy) or what is sometimes called CRPS (Complex Regional Pain Syndrome), put on pain management, numerious pain meds and weekly nerve block injections under anesthesia. I was virtually incapacitated for a year. After that, it seemed to go away on it's own.

This year, I experienced a series of events that have created tremendous stress in my life... Single mom of a 3 year old. Father is MIA. Loss of job and eventually our home. We're now staying tempoarily in a stressful situation with family. Early this year, I found a dear tick in my skin. Within a month's time, I began to experience traveling joint pain (this was right before I lost the job). After I lost the job, I began noticing a few white spots on my hands and arms and larger ones on my underarms. Within 3 months, my arms and hands were covered with them and they were now on my legs (a few appeared on my chest). It was diagnosed as Vitiligo (an autoimmune disorder in which antibodies begin to eat up pigmentation or Melanin). I also began having daily headaches and frequent diarrhea. By the time I finally received my Medicare and had to choose a new (unknown) GP, I'd already began to experience weekness, tingling and pain in my arms/hands and lower legs/feet that felt very similar to how I felt when I had what I thought was RSD (only, at that time, in one arm and shoulder). The pain has become almost unbarable and I'm beginning to drop things.

Finally... I just got the referrals to a Rhuematologist and Neurologist. Tomorrow, I'll drive nearly 2 hours with my daughter in tow to the Rheumatologist (would have had to wait 2 to 8 months to see one closer to us). You can't be picky when on State-run insurance. I'll drive nearly an hour to the Neurologist on the following day. I'm just grateful to be getting treated. I don't have enough history with my GP to feel totally comfortable with his methods. Especially since he first prescribed a medication and later gave me a sample of Savella (for FM) that has a potentially serious interaction with the other prescription. Because it was a sample pack, there was no Pharmacist to catch the mistake. I found out when I did some searching online. Also, after the 4th office visit, I mentioned the history of Rheumatoid Arthritis. He literally jumped, did a double take and grabbed my chart to look. He obviously missed that essential fact... That's okay... because I'm able to get the referrals. But, over the last month, the symptoms have worsened dramatically.  Too bad there couldn't have been a more proactive/agressive approach on the Dr's part.

I'm learning that this is a common experience. I can only imagine the countless folks with FM who's doctors have unwittingly wasted major amounts of time (even years), while symptoms only worsened. A patient really has to be his/her own advocate... especially when covered by State-run insurance.

So, I can't seem to get a consistant definition of Fibromyalgia. Is it a broad name for an unexplained set of symptoms?

Welcome to the forum! You'll find a lot of compassionate and understanding people here. I love HW because I always see so many people here who are able to laugh at themselves and knowing that there are others in a similar situation who are able to cope really encourages me. If you're in need of a laugh I suggest reading our Fibro Soap Operas.

Fibro covers a broad range of symptoms with varying degrees of severity. A lot of people think it's not a "real" disease, or that it's all in our heads. The symptoms can appear to manifest completely randomly. It's especially hard for you and your loved ones to deal with the fact that one day you feel almost normal, and another you are laid up in bed unable to move. Fibro does seem to be the catch-all diagnosis for anything the Docs can't really explain. What I mean by that is: it seems that most Docs arrive at the diagnosis of Fibro by testing for and eliminating every other possibility. During the diagnosis process I had blood drawn at least 5 times, had radioactive material injected into me, sat for countless X-rays and CAT scans, had ekocardiograms and lung function tests galore, and saw 8 different physical therapists.

Take a look at the Fibro 101 thread. You'll find a plethora of links with good information there. There is also a symptom list written up by HW members someplace. We also have Chronic Pain chat nights every Thursday and daily Koffee Klatches.

http://www.ninds.nih.gov/news_and_events/proceedings/Reflex_Sympathetic_Dystrophy_2001.htm

Above is the link to the info I've quoted below. It suggests a possible connection between autoimmune inflammitory disease and RSD.

"Dr. Linda Watkins suggested that the immune system might play a role in the disorder since signs of inflammation (redness, swelling, increased blood flow and tissue accumulation of immune cells) in the painful region are common in RSD/CRPS patients. The release of pro-inflammatory cytokines in response to neural and glial activation may be one connection between the abnormal regulation of the sympathetic nervous system and the characteristics of inflammatory immune reactions seen in the disorder. These thoughts connect to the idea that peripheral inflammatory processes are involved in the pathogenesis of early RSD/CRPS. However, the exact mechanisms of the initiation and maintenance of these inflammatory reactions, their connection to the sympathetic and afferent (peptidergic) innervation of the affected tissues and their relation to the central changes (e.g., the spinal cord, as addressed by Dr. Watkins) are far from clear. Dr. Levine, who presented several similarities between RSD/CRPS and autoimmune inflammatory diseases such as rheumatoid arthritis, provided support for this idea."

Just trying to make sense of these abrupt, intense and painful changes in my body.

Post Edited (Splendidlife) : 9/16/2009 6:03:43 PM (GMT-6)