Brand new and freshly dx

Hi,

I was dx with fibromyalgia about 3 weeks ago by my doctor, he is not a specialist but is chief of staff for internal medicine at his practice. I'll be honest, I'm having a difficult time accepting the dx while also having a part of me relieved to finally "know" what may be wrong. I am also meeting with a neurologist on Wednesday for a consult and to rule out anything else. I was hoping someone could help me understand the dx and whether some of my symptoms can be / have been related to fibro. Part of my problem with the dx is pain is not my primary symptom, my dr didn't do a pressure point test or questionnaire, he relied on medical history, a brief physical exam, a huge amount of blood work to test for autoimmune issues, vitamin deficiencies, organ functions, and basically a "ruling out" process. I also felt like, based upon some of his language, he believed people didn't really want to accept the fibro dx, was a little frustrated with me saying that "maybe I wasn't ready to accept this", and referred me to the neuro so that we could rule anything else out for my peace of mind.

While I am in pain on a regular basis, I also have had past sports related injuries, tend to be pretty active, and chase around an extremely active 3 year old on a daily basis so have tended to blame the pain on those issues. Since I've had the dx, I'm more aware of the general pain and can say that it's more of an issue that I've paid attention to in the past. I tend to be the type of person that just does what needs to be done regardless of how I feel physically or mentally, so that may be why I haven't been as focused on it and tend to try to ignore it and just go on. I do have days where it's difficult to move much, just seems to take every ounce of energy and mopping the floor can leave my arms and back sore for 2 days.

My biggest symptom or complaint is tingling in the hands, legs, and feet / toes. It's daily and can be non-stop for hours and excruciatingly annoying. My dr explained that fibro is essentially a nerve disorder and my "pain" nerve response could be causing this. I've read a little about fibro fog and do believe that I've experienced some of that, especially the memory and trying to find the "right word" part, but not always. My dr also said that I had atypical symptoms as well...I've been having (for the last year that I can pinpoint, another one today) what I best describe as "episodes" where I feel like I'm disassociated from the situation I'm in and everything is a little fuzzy and either more intense or slower. In a mild form it's like things a brighter and I'm 100% aware of what's going on but it just takes a little more effort and at worse times it's like I'm aware of what's going on, what people are saying, what I'm saying, but I'm looking at it or experiencing removed from myself. I've also had moments of feeling off center, like I'm off balance and could just tip over. Not dizzy or world spinning, just off balance and that things are just not right. Sometimes like the ground just jerks out from under me. Today I put my son down for a nap, sat outside with the dogs, got a massive metallic taste in my mouth, saw a few black spots in my eyes then things seemed to slowly fade to black. I didn't feel connected to my body or able to function at all. I managed to go inside and lay down and it passed within about 10 minutes.

That doesn't sound like what I've read about fibro fog, is it similar to what others have experienced? Some of my other atypical symptoms my dr said he didn't have an answer for was the massive tingling / numbing being my primary symptom, I seem to have problems with my depth perception, and the episodes I've been having. Do those seem to be common with fibro?

I know, especially for a first post, this is a novel. Sorry about that and kudos to anyone who actually read it all! :) I'm just starting this journey, trying to figure it all out, and come to grips with it. I spend my days solely responsible for my 3 year old son, who is my world. Some of these symptoms makes it pretty scary sometimes. Any suggestions would be appreciated.

Keikhonu welcome! You medical history is to far common. Every thing you mention fits the fibro symptoms. I have had all of them myself. It"s hard to believe that fibro can cause so many problems in ones life, but it does. You are in a great spot to learn as much on fibro as you can. The more educated you are the better you get managing your fibro. I was so thankful when I found this site myself. I have imporved so much over the year. It took some time to figure what works for me. I would recommend you read other post and ask questions. See what others are doing to treat their fibro. Get some ideas and once you get them ask your Dr. about what you want to try. This is how I got where I am today.

You will see we all react different to treatments and meds. Most of us have other medical problems with the fibro. It can make our treatment so different from others because of this. Your Dr. seems he has done some good medical checking on you. If you dont feel your Dr. approves of Fibro or has negative issues with it, find a new Dr. You want one that you can feel comfortable and trust. You ae going to need all the support you can get. Your Dr. should be your main support.

I hope I was able to help you some. This is a wonderful place for support. Anytime you need some, let us know. Feel free to aks questions. I hope to see you around.

Keikihonu- Oh that test is never pleasent. It might of been better if you didn't know ahead anyways. It's a little nerve racking. Lol

Deep well I understand what u mean about the ground seems like it's moving when ur walking. I always fast my head feels funny and I have to start walking slow and watch where I take the next step u kind of feel like ur floating kinda lol idk how to explain it but I do that I wondered y I guess it does have to do with my fibro. After reading a lot on this forum I find so many things that ppl do that I do also and had just never connected it with my fibro. Does anyone have trouble with their eyes?? At night some during the day my eyes water severely and I have like this stringy mucus stuff in them so bad that I have trouble seeing!! Does anyone else have this trouble?? I've took different types of allergy meds and they will help for a few days then it starts getting bad again!!

Afternoon all, I hope everyone's having as pleasant of a day as possible. I finally received my emg and nerve conductivity test results and I'm frustrated and little upset / angry. It seems like, from reading through posts and other things online, a certain level of frustration during the initial dx process is pretty common.

I was told I would receive my test results within days and didn't hear anything. A week later I called my drs office and they told me the neuro dr should be the one calling with my results. When I told the nurse, the neuro dr had said as I was leaving the regular dr is the one who ordered the tests, my regular dr would be the one to go over the results with me. I told the nurse I was calling because I hadn't heard anything. She said it could take weeks to get the results and she'd check and call me back. 2 days later I got a call back from an office person saying they had a message that I wanted to set up an appointment. I informed her that I didn't want an appointment, I was checking on test results and wanted to know what the next step was. Again..."we'll talk to the doctor and call you back". I left another message a few days later as we were going out of town on vacation and I really wanted to know what my results were and what I needed to do next. Finally heard back from a nurse last week while we were on vacation and I am so unhappy with our conversation I cried in frustration after I hung up the phone. She told me my tests were "fine" and when I asked her to elaborate she couldn't just "fine, Dr. D signed off on them" and when I asked what the next step was (appointment to discuss with Dr., any additional testing, develop a treatment plan, etc.) she told me, very hesitantly and spoke quietly "Dr. D said he discussed anti-depressant medication with you or alternative treatment plans, if you want the Rx for Lyrica, you can make an appointment and he'll go over the prescription with you.". That's it. I told her the Dr. had briefly covered that 3 drugs were approved...2 anti-depressants and 1 anti-seizure that apparently according to him block the neuro receptors in the brain and had briefly discussed holistic treatment as a possibility. We certainly did not cover any medications in depth nor did we talk about an alternative treatment plan.

I'm frustrated because the Dr made a very strong point during my initial conversation with him the history of fibro, the past thoughts on it being psychological in nature, how medical science has debunked that theory and that it's a very real physical illness. My conversation with the nurse, due to her language and manner, just left me feeling like she was treating me as someone with depression or anxiety (neither of which I have ever had a major problem with or been dx with) and psychological condition...and from her and the dr...here's your drugs, now start taking them and go away. I'm frustrated I had to be the one going back and forth for results and I still don't really know what those results are. I'm frustrated both the neuro and regular dr expressed some concern over a couple of my symptoms being atypical or unusual of fibro and now I feel like those symptoms are being ignored because the Dr decided I fit fibro and that's the end of it.

I have absolutely no idea what to do now. I just feel a little written off and like I should just be a good girl, accept the dx from the dr, quit asking questions, and take the drugs. Which, admittedly, isn't really my personality :)

While I understand antidepressants have worked for some and I really don't want to offend anyone here...I'm very resistant to starting to take a powerful medication without more research or more discussion. I am interested in learning all I can about them and also about alternative treatments (which would be my preferred option). If it came down to it, I knew enough to understand how the drugs work in our minds / body, and it seemed the safest / best treatment for me, I'd do it...but not without more knowledge and understanding on my part.

Again, I just don't know what to do next. I'm not sure I even want to talk to this dr again...however he's the one with my history and tests up to now. Thanks for letting me vent!

I used to have issues with feeling like things are going black, and it was due to low blood pressure. I also had a poor appetite at the time, and likely my blood was low on iron.