Fibro Questions

Hi everyone,

I'm a few yrs out from an RNY and a newbie to this board but I hope I can get some help here.  I haven't officially been diagnosed with fibromyalgia yet.  I don't know how to go about describing what's going on with me other than saying I hurt everywhere, and it's something new every morning.  It's mostly my back, shoulders, inner knees, neck, above and below my butt (hips, I guess), etc...I'm driving my family crazy "whining" about everything.

I've been having problems since my senior yr of HS, at least.  (I'm 25 now)  I've had tons of xrays, bone density scans, and an mri of my neck, upper, and mid-spine.   The most they can come up with is that I have arthritis of the spine & neck, scoliosis, and mild osteopenia.  

Before the MRI, I was given Soma after trying tons of other things.  I can honestly say it was the first time I ever felt some relief.  I was finally able to sleep w/o waking up 5-6 times, and felt so much more "rested" in the morning.  I take ambien, but have found it does no good with sleep. I still wake up multiple times and sore all over in the mornings w/ "swollen" feeling eyes.  :( 

After the MRI said I had arthritis, the Dr. cut me off and told me since it was "arthritis" and that I didn't need Soma because my "muscles weren't involved."  Basically "Tough luck.. you have a pouch, take some tylenol"  They *did* try Neurontin & Lyrica because they weren't "addictive" (after I experienced some shooting hip/leg pain), but neither of them helped.  They weren't effective, I retained tons of fluid, and they made my feet actually throb. Other than them not working, I would really prefer to take something that is weight neutral, and both of those have weight gain as a side effect.

Anyway, would Fibro explain why the Soma helped when none of the other stuff has?  (NSAIDS before the RNY, vioxx, celebrex, tylenol, etc.)  I've seen where some people are prescribed it for fibro, so I just wondered.  I can't explain why all of the MRIs and stuff just showed "mild arthritis" because it hurts everywhere, in places where there aren't even bones, really. 

Thanks :) 

Most of the times Fibro does not cause swelling. Have you had your RH factor tested?
Fibro does kinda sorta mimic arthritis and even has some of the same qualities if you ask me. I can tell you when it is going to rain. I can tell you when hurricane season is about to hit. Cold weather kills me, hot weathers irritates the **** out of me.
I love spring except for the showers it brings.
You being so young is where your going to run into problems at. They are going to be reluctant in treating you with narcotics. At least that is my experience. If you find a good enough doc you will get relief. It took me 30 yrs to find my doc and now I am so glad I have her and so scared of having to PCS away from her just to have to start all over. You will find docs that say narcotics won't help you. Tell them they need to go back to school because they are WRONG. But with you being so young they are not going to want to treat you with the narcotics. I could just about quarantee that one. At least that is the experience I have had and some of the others I know.
Allot of people do not realize fibro is also a mental disorder. If you have it and know anything about it there is not a doubt in your mind that is what it is. Nothing else fits but yet everything fits. That is the main problem. It could be so many different things linked together that it is hard getting diagnosed. Well I shouldn't say that because now they are using it as a blanket DX and everyone and their brother has it. It will be another ADHD case if you ask me. They will DX you just to make you go away and leave them alone. You will be marked so many times as drug seeking but you cannot let that get to you, you take it and move on till you find a doc that will actually help you.
I have tried every drug available. Viox, celebrex, mobic, ellaville, gabapentic, naproxin, lyrica, tylenol, motrin, tylenol 3, codiene straight, roxicet (miracle in a bottle but they took it away damn docs!) fentyl (loved the effects but was allergic to it but it works wonderful) and now I am on Opana ER opana instant darvocet and percocet, When you finally find you a doc tell them you want to switch your meds back and forth to make sure your body does not become use to it. That way it keeps its pain kicking powers.
Then once you get a treatment plan going find you a shrink. If you have fibro your going to need one. With firbo comes depression. It is no lie that fibro is somewhat of a mental disorder. We feel the effects physically but it is also linked to your brain. So find you a shrink that is well read up on the disorder so they can help you through the hard parts.
Not many people is going to understand what your going through. Your going to hear so many put downs that you will cry more times than you can count. You will be told its in your head, so just tell them yes it is in my head but I feel it in my body. Tell them its the equivalent of you beating their ass with a baseball bat. Tell them you are offering that to them so maybe they can understand you a little better. Your going to be told your drug seeking. Your going to be told your faking. Your going to be told there is nothing that anyone can do for you. Your going to be told exercise is going to be the only thing that will make it better. Your going to be told so many different things just ignore 95% of them and carry on do not let them get to you.
Then here comes the fog and you will forget what your talking about mid sentence as you can tell from this reply that happens to me allot....LOL....You will forget how to spell words that you have known since kindergarten. You will not be able to think straight. You will be so confused most of the time that all you will want to do is sleep because that's the only thing that does not confuse you. No one will understand this problem unless they have been through it. Most of us fibroetts have had this horrid disease for as long as we can remember. Most of us hurt from being little kids, way before it had a name. My five yr old daughter has just now been diagnosed with it. Our rhumey doc said she was the youngest child he has ever seen that has it as bad as she does. He has heard of other kids her age having it but he has never treated one.  Every time I look at her I want to cry because I know what she is going through. They have her on motrin twice a day or as needed.
anyhoooooooooo I wish you the best of luck but I am going to stop rambling now because I forgot what I was talking about and what the original question was and I do not wanna go reread it.....LOL.......
P.S.......below is my daughter the one they just recently diagnosed with Fibromyalgia. She is the sweetest baby possible. She loves to cuddle but you have to be careful of her pressure points when she is flared up.

 Thanks so much for your response :)  I already have the fog...LoL...I forgot to mention that.  I emailed my bariatric nurse the other day and asked her about my b12 maybe being out of whack, but I've been taking it in higher doses lately and still a lot of fog.  I'm forgetting whole days, and embarassing myself to death when I sub-teach.  I'll get halfway through a sentence and just end it with a "...soo, yeah." lol.  

I forgot to mention I've tried cymbalta and trazodone, too.  Not necessarily for fibro, but because my shrink thought they'd kinda help me rest.  The trazodone helps that, but I wake up feeling awful when I take it...so I don't.  She's pretty great about prescribing me weight neutral stuff (I'm OCD and have severe social anxiety & depression..the social anxiety probably stemming from my weight)  They have been using "stimulants" (lower dose, of course) as an off-label way to treat social anxiety, and after trying tons of things, I've found it's the only thing that can help me talk around people, not be afraid to leave the house, and have the energy after a crappy night's sleep.  

I don't think Soma was really a narcotic, but it & tramadol just got "scheduled" here  (I don't think they did nationally)...so they're both a lot harder to get.  I guess I will try to find a rheumatologist or something.  I have a good PCP, but my chart is huge and everytime I see him I can kinda tell he's thinking "Welll, well, well... look who we have here" lmao.  He's good for snots & sneezes, but that's about all anymore. =/ 

Your daughter is a cutie, it's awesome to see kids who love little animals, too.   Like birds or little furry ones, lol. :)

You need to see a rheumatologist if you haven't.  They should be able to diagnose fibro based on the 18 tender points.  You need 11 to have a diagnosis of fibro.  I take trazadone, flexeril, and cymbalta.  I use hydrocodone for pain ocassionally.  My rheumatologist jokes about how much I use.  Sixty usually last a year for me.  I probably should take it more often but I have a pretty high pain tolerance.

You didn't say if you exercise.  Water exercise can really help with the fibro pain.  It's really hard to force yourself to exercise when you're hurting, but you have to.  It will help with your sleep and the pain.

The others have pretty well covered it all! Yes your first step needs to be to see a rheumatologist to get a diagnosis and then often they send you to a pain specialist for further treatment. The rheumy will be able to distinguish whether it is fibro or arthritis. I didn't think I had much of the mental part of fibro until recently when I was put on Cymbalta and found it worked wonders within 12 hours. I took it at 9PM and when I woke up at 8AM I could roll over without pain for the first time in probably 35 years, it was amazing, I literally cried but this time with joy instead of pain. I' ve also been in a much better mood so maybe had some depression too.  I think Birdy is very correct with changing meds so we don't get used to them. Anyway keep pushing for help and don't let them sweep it under the rug. Best of luck!!!