New - I think this is where I belong

I've been lurking for about a month while waiting for a diagnosis. I've read 148 pages of this forum and Fibro 101 several times. I feel like I already "know" many of you :)

Like many of you, I suspect I've had Fibro for several years. Symptoms really "popped" out and ran together over the past 6 - 8 months. After a really bad flare up in late August (thought I didn't know it was called a "flare" until recently), which probably brought on my stress, I decided to find a Dr. I have a couple friends who have Fibro (one has RA and a bunch of other issues and is in a wheelchair). As God would have it, this friend (who I hadn't been in contact with for several months) called me as I was trying to figure out which direction to go. She has been through 4 rheumatologists in our area in the past several years and last year found one who would actually listen to her. She recommended I skip the primary care (I don't even have one) and go right to a rheumy.

During my initial visit I opted to not mention my concerns about fibro and Lupus (I have a faint butterfly rash most of the time, a rash on my upper chest and neck all the time, hair fall during flares). I wanted him to tell me what he thinks, not put any ideas out there. He listened to how my symptoms seemed to hit me over the past year, with several major flare ups in the past 6 months. When I saw him, I was on the tail-end of a moderate flare. Extreme fatigue, and achiness all over (including joints), extreme brain fog, and trouble sleeping. My main areas of pain are upper back, neck and shoulders, but I have quite a bit of problems with my legs, elbows and wrists as well. After listening, he examined me (poked and prodded) - tested tender points. He said, "You have the 'touch me not" disease." All 18 tender points - ouch! I was so glad to know this wasn't all in my head! Severe fibromyalgia was his diagnosis.

Of course, he wanted to do blood work. Especially since I have some joint tenderness. He suspects something else is going on in addition to fibro, but was ready to start treating the fibro right away if I didn't want to wait for blood work. I opted to just start with Tramadol. I already am taking magnesium and advil does sometimes help if my joints are hurting. The blood work came back looking pretty good - confirming fibro dx for Dr. I had a negative ANA, but elevated CR-Protien (?). I asked on my follow -up about Lupus (I have a family history of auto-immune disorders). He says with a negative ANA, I don't have Lupus. I know that is not always the case though. He is doing some "deeper" blood tests to try to rule out Lupus since I have concerns and I have that rash/hair fall. My thyroid levels were perfect. Hair fall isn't all the time, just during bad flares. Dr. offered to put me on Cymbalta and/or Lyrica, but I want to give some more natural things a try first. I only take Tramadol and advil when I really need them. After discussing my concerns about Lupus and some issues I'm having with my hands, he mentioned trying Prednisone. I know it doesn't help with Fibro, but in May when I had a flare and thought I had shingles the Dr. at urgent care said it was just a rash and put me on a step-down pack. My rash, TMJ, and other joint issues went away. I felt pretty good - until I went off of it. Then I felt horrible. The Dr. says if the predinsone helps me a lot, then that tells him something else is definitely going on besides fibro. Since I am getting ready to go on vacation, I've decided to wait to take the steroid until I get back - I don't want to crash while we are out of town trying to enjoy ourselves with family.

So, here I am. Trying to figure out how to adjust to this new "normal". It is a bit depressing at times. I feel like I lost my life. I know it could be much worse. I have already cut my part-time hours in half. My job as an administrator and guidance counselor at a small Christian school can be pretty stressful and I just can't do it all anymore. I'll be losing 1/2 my paycheck. I am blessed to be able to work from home part of the time and have flexible office hours.

I live in SW Florida, 47, married, with two sons (21 and 19) whom we homeschooled. Our oldest is married and the youngest still lives at home. My husband is amazingly supportive, but this has been quite an adjustment for him as well. I hate being tired all the time. Another reason I cut my hours/responsibilities at work is so I can focus on doing what I need to get healthier (exercise, better meal planning, rest, etc).

I'm looking forward to learning from others who have been on this journey for longer than me. I have bad days pretty often, so I might not be a frequent poster. The computer bothers my eyes lately. If you've read all the way to this point - thank you! I know I was a bit "wordy" tonight :)

Welcome to the ouchy corner. :))
As a person with fibro and lupus I can tell you that a negative ANA doesn't always mean no lupus. Check out the lupus forum, lupus.org, and lupus.com.

I'm glad to meet you.

Welcome flmom2boys! I am glad you decided to join us. I know you wont be disappointed in this forum. It sure has been a blessing to my health. I have learned so many valuable tools from this forum. I can see just by your post you have already pick some valuable tools up already. Consider yourself blessed to know so much at a early start of your diagnoses.

Making life styles changes as you have already done will really benefit you. Cutting work hrs. seems to help many people including myself. It doesn't have to become permanent, maybe until you get the fibro uncontrolled. I tell others that making changes in our sleep habits, eating habits, limit stress and exercise with reduction of work hrs. really helps get the fibro uncontrolled. I could see a huge difference in my life once I made these lifestyle changes. Remember it does take time to perfect these, so don't get is discourage.

If you haven't bought a book on fibro, order one on line. It really helps you undertand the depth of fibro. Educating yourself is so important. I found myself on each page and it was like the missing puzzle was finally found. Many things you will learn here and a good fibro book will never be shared by your Dr.

It sounds like you have fairly good control over your pain. Tramadol works well for many here. Predisone is a wonderful drug, but it shouldn't be used for long term. It has so many long term side effects. I am sure your Dr. Will inform you of this. I was amazed how exercise help my fibro. It made a difference in my pain.

I try to keep my treatment as simple as possible. Many fibromites are very senstive to drugs. I do the following- heat, light exercise, rest when needed, limit stress, eat healthy, magnesium, vitamin D, remron and subutex for pain. The best tool I have learned here is do things in moderation. If you can learn that, it make a huge difference in the pain level and fatigue.

Let your husband get involved in reading about fibro. My husband is finally understanding after many years living with my fibro. I hope we see you around often. Hope all your other test work out well.

Post Edited (ak angel) : 10/14/2013 12:32:09 PM (GMT-6)

just wanted to say Hi and welcome you I am somewhat of a newbie to all this myself, and have learned so much from the ppl on this forum

There are two theories of treatment, broadly speaking. Start big or start small. I am of the conservative start small mindset.

Welcome!

Good living, in diet, exercise, sleep, and positive mindset, is very important to overall health.

It sounds as if you are on the right track.

Hi, Flmom, and welcome! You have gone through what most of us have. I'm glad you did get a diagnosis...that's half the battle. But you can have other things going on too. The CR protein test is to check for inflammation and it sounds like you have some going on. Fibromyalgia is not considered an inflammatory illness so I'm gld they are still checking you out. I have a lot of inflammation but from other illnesses I have.

I'm glad you have been reading Fibro 101 and also posts. There is a lot of info on this forum and it gives you a good idea where to start.

I use ibuprofen with food, Tylenol, vitamin D3, magnesium malate, and a muscle relaxer called Robaxin to help me be in control of the pain and fatigue. The muscle relaxer and magnesium made a significant difference for me. I also walk daily, do stretching exercises and pace myself when doing things. All of the above helps me.

I too am a positive thinker and that has helped me nearly as much as medication. There is a good link in Fibro 101 about maintaining a positive attitude when you have chronic pain. I go back and read that when I'm having one of those days.

I'm in southwest Florida, too...the Tampa Bay area. Hasn't it been gorgeous this past week? Get out and enjoy it! I sure am.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine