Hello to everyone. I'm new to this group and thankful to have found such an awesome resource! I've been coping with a wide range of painful and frustrating symptoms since May. Today, my Neuro diagnosed it as FM. I will admit that I didn't really expect it. I have a bunch of questions and hope that y'all can share your thoughts and opinions.

I'm 37 years old. I live in Alabama with my husband and three children. I was diagnosed with Interstitial Cystitis in July 2010. Other than that, my medical history has been uneventful.

May 2011- I started to have tingling and burning followed by muscle pain and weakness in my right arm and leg. My arm pain is mostly along the backside of my arm. My leg pain is worse than the arm. It will spread over my entire leg. Some times the back of my leg from my hip to my knee will hurt the worst and then other times, the back of my leg from my knee to my calf along the backside will be the worst.

When the pain isn't what I've just mentioned, the flare up will be nothing but prickling like the feeling that comes from moving your arm or leg after they've fallen asleep. When the prickling finally ends (can last hours) the arm or leg will just ache and ache and I will do all I can to not use it at all.

I am a stay at home mom so I ignored the symptoms during the summer because the boys were out of school and we stay busy. When the new school year started, I decided it was time to see a doctor. I was worried that it was a blood clot or something...

August- saw GP who said I was probably just depressed but should see a Neuro. I wanted to slap him. It irritates the mess out of me that male doctor's are so quick to diagnose women as depressed. He also told me that maybe I needed get a job and work outside of the house because staying home is not fulfilling like a paycheck. Umm..right.

End of August- saw Neuro that GP referred me to. He ordered an MRI of lower back. It came back normal and he told me nothing was wrong with me but he was sending me to NeuroSurgeon just to be sure.

Beginning Sept-saw NeuroS that did nerve conduction, EMG and MRI of cervical spine and brain.

October- Three days before my follow up appt with NS, I had complete paralysis of the right side of my face and arm. My husband took me to ER and the diagnosis was Bells Palsy. My arm recovered quickly and my face was recovered within a few days. I saw the NS afterwards and he told me that all my tests were normal and that there is absolutely nothing wrong with me. He even said "it's definitely not MS."

In November I saw a new Internal Med doctor that has been amazing. He was the first to put me on a round of steroids, pain relievers and referred me to a new Neuro at a bigger hospital.

December- EEG, MRI with contrast of brain and spine, MRA. All normal.

February-EEG, EVP and Spinal Tap. Lab test for ANA and SED rate.

Today- I had follow up with Neuro and confirmed latests tests were normal. I was in his office less than 2 minutes and he says "it's Fibromyalgia." He put me on Savella and to call him in a couple weeks to let him know how it's going and that was it.

He's never done any kind of examination for FM. We had never even discussed it. It's always been MS. I feel confused..as I've felt this entire time!

My symptoms have been horrible lately and are so much more than what I've just listed. The bottoms of my feet hurt so badly I dread walking, wearing shoes, or one of the boys stepping on them. They felt this way last year and I thought it was just the winter cold. It will come one day and be gone the next and it's on warm days and cold days. My butt muscles are sore and feel like I've been punched. My lower back aches and makes it difficult to sit or stand some days.

When I wake up in the morning, my hands are so stiff that bending my fingers is difficult. They have to warm up and flex before I can comfortably hold a coffee mug or tie shoes. I have vibrations in my feet.

The tingling in my fingers is aggravating and my hand has changed the way it grips a pencil or pen. Silly as this sounds-I realized one day that when I was folding towels that I couldn't get my right hand to hold on to the towel.

So..there's my long story. I'm so sorry if I've bored y'all to tears! I see a Rheumatologist in March. Will he be of more help than the Neuro? What can I expect from the new meds?

Thank you!

~ Leah
currently taking UltramER 300mg and Savella (first dose today)

First, Its sure a long story.

Second, it definately sounds like fibro.

Third I'm so glad he didn't do anymore test. There isn't a test for fibro,
per say. There is a chart some doctors' use sometimes. But its just
a tigger points chart of the body. And I really can't give you the parts
of the body you have to hit on to have to have fibro.

But I'm pretty sure you have hit the marks.

So I do believe he hit the mark this time. And honestly of the difference
between the two. I'm glad he could say its fibro.

But that doesn't mean it will be easy. Its not always easy to find meds
that work.

Now about the symtoms.

!. The foot pains. I would go see a foot doctor. I know that sounds
weird. But he can help with that.

It was one of the best things I did. I have planters Fastacis. And it was
that I needed to wear specific kinds of shoes. And I needed to have
him make me ( ) for my shoes. Sorry I can't remember their names.

But they were a godsend.

2. One of the best things I've done is find a good massage Therapist, I
used to go to her 2 times a week. But its costly, so I try to go at least
weekly.

So I would suggest, seeing if you can find a good one.

I also have other issues. That would cause me to end up in physical therapy.
If I didn't go to the massage therapist. So its been a savings for more than
one way for me.

But please keep asking question.

Now the reumy, might be good help. Or not, I don't know. I use a pain management doctor. But it sounds like your internalist is good.

Donna

Thanks, Donna. I've been reading and researching FM since my diagnosis and I feel certain that my Neuro gave an accurate diagnosis. I think he just threw me off when he spent such little time discussing it with me. My appointments with him leading up to that point had always been much different. It could be that he's now confirmed that there is no concrete neurological issue for him to treat.

I see my Internist this week and actually found an article that he published on FM. Just another reason to appreciate him.

I'm definitely going to ask about massage therapy. Today is my 5th on Savella and I've not noticed any difference...actually I'm in the middle of an awful flare.

Hi
well, at least you know what you don't have. And that can be a good thing! A fibro dx can be hard to get, and harder to treat. What works for me, may not for you. There is a lot of trial and error, especially with meds. Expect some frustration there. One thing most everybody agrees on is vitamin D3. I started that and felt better after the first one! I was that deficient!

I also see a pain mgmt doc, he's a keeper! Rhumys do a good job with fibro, if you feel s/he isn't, fire them. It's your pain and life.

I posted a longer version of my story in another thread.
The feet definitely sound like plantar fasciatis and there are exercises to do as well as shoe inserts. Periodically I feel like the Brothers Grimm little mermaid walking on pins and needles in the morning!
The book From Fatigued to Fantastic by 2007 by Jacob Teitelbaum, M.D. was the beginning of my improvement. After about 4 years of supplements and gradually increasing my exercise the tender points were barely tender!

Supplements: alpha lipoic acid 600 mg daily, acetyl carnitine 500 mg daily, CoenymeQ10 200 mg or Ubiquinone, ginger for pain (it is also an anti inflammatory).
Consider asking your doc to test you for Vitamin D (D3 25 hydroxy) even though you live in the south. Sunscreen blocks the conversion of Vitamin D to the active form.

Exercise is very important. You might start off with swimming which is kind to the body. Don't forget to do gentle stretches.
Massage is great!
At my worst, I would huddle under a blanket with as many heating pads as I could fit all over my painful legs and arms. Now I rarely need pain medicine except occasionally at night if I over do it with physical work, such as painting walls all day!

There is hope!!!
Save some pain medicine for night time because fibro sx get worse when sleep deprived.

fibrosince
Its so nice to see a upbeat post. I too have plantars fasticus.

I have had the inserts, and the pain meds. I do the massage, and
heating pads.

And I have the ever day meds. I'm so glad you are doing so good.
I wish I had the swimming, I'm working on getting the exercise
membership.

Donna