Not anything else - must be fibro?

Hi all! My rheumatologist just gave up on me this week. We don't know what I have, therefore, it must be fibro. "That's what we are calling it, until we find something else." Ok, I understand. ALL of my labs have come back normal - except my ANA and the B12 was normal-low (MMA was fine though). We've ruled out MS, Lupus, most autoimmune disorders, no arthritis, no inflammation. I'm a mystery - here, have a pain pill. (Sigh)

The first neuro couldn't help either - she was an MS specialist and I really liked her a lot, but after I got in two car accidents in one week last month (with my children in the car, mind you), she referred me to a neuro-muscular specialist. I just saw him yesterday for the first time. He said all the labs he would order, they already have. But they are scheduling me for an EMG - I'm a little nervous about that.

He said I do not fit nicely into any one diagnosis. He said, if you fit three diagnosis' part-way, none of them are correct. We are taking a "broad" approach to the nervous-muscular system.

Meanwhile, after he did those strength tests on me, I am not doing well today. I can barely use the computer and have so much work to do today (my work is all on the computer). Two weeks ago, I was with another flare and I am not sure what triggered it.

I love reading this forum because you are real people with real symptoms and experiences!!! When I read about fibro on a checklist, it's hard to really say. So many vague symptoms. May I compare my key symptoms to some of yours, and see if this is feasibly a fibro thing?


1. Tingling and numbness: mainly in my hands/arms, one side of my face. Same places all the time - but how it spreads is based on intensity. Sometimes I lose sensation in my skin; sometimes it feels deeper. Sometimes I can even feel my brain tingling... or like it is numb. The organ. Isn't that weird? Not my scale... but the tissue.

2. Extreme sensitivity to cold: even the most subtle breeze from a ceiling fan causes incredible aching. It is the kind of ache one would feel if they held an ice cube in their hand too long. Cold definitely makes this aching much more worse. I'm also sensitive to heat, though. It doesn't hurt like the cold. And with the cold, it is anything exposed. I have to wear gloves to bed sometimes, or take a hot bath. I'm not cold persay ... but my body aches as if it were in the bare in the snow.

3. Aching: It's not what I would call "pain" ... but it is uncomfortable and unpleasant. I can't even pinpoint it. It's like it is in my bones almost... but it's everywhere. I feel it in my arms more than anywhere else... but when it get really bad, it spreads to my sternum and rib cage. It's a predictable pattern and, like my numbness/tingling, follows a pattern. It is symmetrical typically.

4. Extreme muscle fatigue: I thought it was weakness, but we've learned it's fatigue-ability. Repeated motions. Contracting a muscle. Yesterday, just doing strength tests against the doctor's force on my arms caused severe tremoring and exhaustion. Even looking at a spot on the ceiling for two minutes was painful and caused fatigue in my shoulders and chest area. (Wierd). I am suffering greatly today and all I did was "push as hard as I can" for two seconds, each test. Pumping gas, brushing my teeth, washing my hair, slicing vegetables with a knife - these are hard for me. I can no longer grocery shop, fold laundry, do dishes. Any sort of manipulation in the air, while holding something. If I DO do it, I feel the burning of muscle failure... like if you were in a push up position too long. I describe it to people this way: it's like holding a 10-lb dumbbell in your hand, palm up, straight out to your sides and just hold it there minute after minute. I cannot even do that for a second... but, the strain and fatigue you would feel in your joints and muscles. The arms would drop, the burning, the fatigue... I feel that every day doing very routine tasks.

5. Tremors: I thought my vision was jittery. Turns out it is my body - vision is fine. I constantly tremor and have for nearly two months. It gets worse after muscle use, or certain positions. If I let my blood sugar get low, it gets worse.

6. I don't even know how to label No. 6. It's like a slight tickle, or very very light electricity going through my body. Have you ever, upon waking in the morning, not been able to squeeze your hand? There is a almost ticklish feeling to it, and no strength to make a fist? I have that constantly - every day, always, everywhere. It makes me bonkers. What is that??? Is it my nervous system? ARGH!

7. There is pain in my heels when I stand, my elbow if I lean it on a counter for support, a wood chair under my butt... anything that presses against anything. It's like I need to wrapped in pillows. :)

I really appreciate anyone who took the time to read this, and for any insight you may have. Does this sound like a fibro thing, or do you think I am dealing with some sort of nervous system issue? I have read so much about fibro and the info sites do not resonate... but when I read from all of you, it sounds like the same monster.

Guidance?

Post Edited (tinglyinnc) : 10/24/2013 10:11:09 AM (GMT-6)

Thank you so much for your response! I'm really not frustrated - I think the doctors have done all they can. I can't expect a crystal ball or anything. :) I can live with whatever it is ... I'd just like to know if something I potentially have is progressive.

I do appreciate your help... and tend to agree. It sounds like fibro. I guess we will go with that for now! And like you say, perhaps there is something else as well.

I wasn't sure if this was the same type of fatigue others felt - or if that was a more generalized fatigue. And the tremors... that seems like something people with fibro talk about on forums, but something that is not really listed as a "symptom" on many informational sources/doctors. It makes me feel more assured that I fit the bill!!!

Thank you!!! :D

Post Edited (tinglyinnc) : 10/24/2013 1:10:15 PM (GMT-6)

May I ask, how do you do it?

I was an avid swimmer before this began. It just took over, out of nowhere! I was swimming 1-1.5 miles 3-4 times a week, and doing pilates 3-4 times a week. It was a regularly part of our week to go to the Y - my boys and me. Then, it's like it just got slower and slower, until I just couldn't do it!

I tried modifying the pilates to where there was no resistance... just the stretching and maybe holding the little steering wheel instead of squeezing it, etc. It became too much over the past 6 mths.

I have tried gentle swimming - not even lap swimming. Just a little treading water, walking in the shallow end and that causes tremendous payment afterward. It has gotten so bad, and I MISS this exercise! I used to be a runner, but that became nearly impossible toward the beginning of the year, so I joined the Y to swim laps.

Even walking. I have a treadmill. Even the slowest, flattest walk punishes me for days. Perhaps I am just flared and it will improve? This came out of nowhere in May, and steadily declined - fast! I'm not depressed yet! I am of the spirit that this will get better and I WILL swim again. My account is frozen at the Y until January - optimism, baby!!! :D

Even though this hit in May, I see, though, in my past, where there have been things that were warning signs.

I will keep reading and learning. This seems like a wonderful place for information and support. Thank you again. :)

Good advice! I think right now my "exercise" is climbing the stairs in my house to use the bathroom, and brushing my hair. I can only drive the car 1-2 times a week. And that is ok for right now.

I have been taking Vit D, fish oil, B12, magnesium, coral calcium, aloe vera (IBS), potassium and a probiotic... it really seems to help! I've been off wheat for about a month. While it doesn't seem like it helps, persay... it sure triggers things if I am already hurting.

I see what you are saying. I will continue to learn and manage. ;) I DO feel better knowing that this is more than likely fibro - a name, a name!!! And other people who can relate!!! :)

A lot of what you listed is fairly common with fibro. Fibro hit me badly in the elbows and the pain ran into my hands and my hands were very weak for months. I finally did get the strength back in them.

I get tingling occasionally along with feeling like a bug is crawling on me. I get hot or cold spots on my skin and sometimes it feels like water is trickling down my leg.

The sore heels are probably plantar fasciitis and quite a few of us have that. The pain got so bad with that that I could hardly walk. I switched to Birkenstock shoes and after several month I could walk without pain. Now, I only wear Birkenstocks. Some have orthotics made to slip in their shoes, too.

Gentle exercise is important. I walk daily as my form of exercise. Swimming and yoga are good too. I also do stretching exercises and pace myself when doing things.

You might try magnesium malate and vitamin D3. Deficiencies in these can cause more pain. There are links in Fibro 101 about these. Also, I have gotten relief from a muscle relaxer. The one I use is Robaxin.

If you haven't already, please read Fibro 101. I do think you will see yourself there.

I do hope you find how to control your pain. Once you do that, you can live a full and enjoyable life in spite of this illness. We are here for you so don't hesitate to ask questions.

Sherrine

I am so grateful that all the CaTs and MRIs and 100s of vials of blood have never come up with anything horrible over the last 25 years or so.

Still isn't a Utopia, but I'm grateful.

One hour at a time through the worst of it...

Hi, Tingly.

I must say, your description of muscle fatigue: "any sort of manipulation in the air, while holding something," hit the nail on the head for me. I have to have somebody else move almost everything for me, and it drives me crazy! This has only gotten worse in my case.

I was a big exercise person too, before...it seems a lot of us were. I even sometimes wonder if overdoing is a factor in developing Fibro.?

As for lack of cold tolerance, I could write an essay on how that impacts my life! Jewelry is something I almost never wear anymore, even though I still have about 30 old necklaces. I can't stand any metal or stone on my skin, even in the summer. It has to be wood, leather, fabric or plastic. No slinky fabrics, ever.

It IS good to know, though, isn't it, that it's not one of the scary diseases? My dad had ALS; no one should have to go through that.

The latest research (that I've seen) is going in the direction of a possible CNS connection. So it makes sense that we would feel all kinds of odd sensations, I guess.

Good luck with the EMG. Let us know the results.

Debbie

Hi tingly!! I am new to the world of fibro as well, diagnosed this past March. However, I have had symptoms which have progressively gotten worse over the last 8-9 years.

I am still trying to muddle my way through this illness and what works for me, so you are most definitely not alone.

I was never an avid exerciser, but I was thin (size 3/5) However, in the last 8-9 years I have gained over 100 pounds and am still trying to get rid of it with no results. I recently finally got my CPAP machine for OSA, and I hope the weight will come off easier once I get my sleep fixed.

Yvette

Yeah, I guess we would all be laughed off, "What Not to Wear," wouldn't we?   I sometimes wish they'd feature someone with all our wacky restrictions and needs...but nooo, of course not.    I've quit watching that show because all I do is yell at the TV.

Debbie