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Newbie: Could someone please help me understand or guide me in the right direction...

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Fibromyalgia
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Posted 8/31/2013 3:50 AM (GMT 0)
Background: I'm a 33 year old female...two children 15 and 9. I was working full time my entire life, but couldn't hack it as my pain has gotten worse and now work from home.

I'm thin...maybe underweight at times I weigh about 107 and I'm 5'3. I've always had trouble putting on weight and I eat like a horse. My pain is mainly in my upper back, neck and jaw. I clench my teeth at night so bad that I have to wear a nightguard otherwise I have to deal with all day head and neck pain worse than usual. Some days I wake up and feel fine, other times not so much. I have days where I wake up and I feel the pain and stiffness in my upper back, i twist and turn trying to pop my back and it usually won't pop until the evening and then I get a little relief. Deep tissue massages help me soooo much, but a day or two later I feel my muscles in my back and neck tightening back up. My neck is so tight that I believe it affects my ears...my eustachian tubes are constantly popping when I move my jaw and they always have fluid in them and my theory is that it's caused by tight muscles in my jaw not allowing the ET tubes to function properly. Every time I go to the dr he sees fluid in my ears. One of the drugs that makes me feel a TON better is prednison...omg I take that and it's like wow this is what normal people must feel like. My headaches go away, my neck and back and all over body pain go away. But that lasts maybe 5 days and then I taper off of it and i'm back to me. :(

My headaches are mainly left sided in my forehead and temples. When I have a headache I have tenderness in the muscles on my forehead and temples. My eyes are sensitive to light almost all the time but way worse when I have a headache.

If I sleep too much or don't sleep enough that seems to trigger the headaches and muscle stiffness.

Some days I wake up and my legs and feet hurt too like a ran a marathon all night and I move slower than usual. I'm too young for this righ? at 33 I feel like an old woman. I'm getting married in 36 days and I just want to feel good on my wedding day and not have a flare up of whatever this is! Thing is I don't know what causes me to flare up. Right now all I want to do is cry.

I added "Newbie" to your title so people would know to greet you :)

Debbie

 

Post Edited By Moderator (Acheybody) : 8/30/2013 10:32:48 PM (GMT-6)

Posted 8/31/2013 4:43 AM (GMT 0)
Hello, ArbyBarbie,

Welcome. You do have a lot going on, don't you?! And getting married soon, too! Congratulations.

Take a look at "Fibro 101," first thread on this forum. The first place I would go is the link with a list of possible symptoms.....it's long! You certainly could have Fibro, but we're not doctors here. Have you been to a doctor about all this?

I know it's hard, but try not to stress about how you feel ~ that just makes everything worse.  Easier said than done, of course.

Unfortunately, people can be afflicted with Fibro in their teens. I was about 27 when it really started honing in on me, and by the time I was 33, I had a lot more problems. It took me years to be diagnosed...it can still take a while, but it's generally better these days, since doctors are more likely to be somewhat enlightened about the condition. There are still some duds, though, who think it's all in our heads ;(

"Fibro 101" also has a link to coping mechanisms, positive thinking, and way more. I hope you'll keep posting. We are here to help. :-)  


Debbie

Posted 8/31/2013 4:58 AM (GMT 0)
Have you had any type of testing done?

You sound like you've got maybe TMJ and spinal issues.

If predisone makes you feel better then it's inflammatory. Ask your doctor to check your ANA, CRP, ESR, and compliments. It all a simple blood test.
Posted 8/31/2013 5:25 AM (GMT 0)
Thank you guys for the replies. Yes I did read the symptoms at the top of this forum...I have almost every single one except no lupus rash.

Prednisone does make my headaches better...as for my body aches I don't think it helps it that much...I may have been exaggerating that a bit...it definitely helps my pressure in teh head feelign which could be allergies/sinus or migraine or tension...haha it could be a myriad of things I suppose.

I have had some testing done for my headaches (they were daily when I worked full time) the Xray of head and sinuses were clear so they did MRI which was also completely normal.

I have had blood tests in the past which showed low potassium and took potassium supplements but it's never gotten low since then...(I had lost a ton of weight back in 2009 and was hospitalized for a week) I had gotten down to 92 lbs...I had no appetite because I had such bad indigestion and reflux after being on azithromycin for strep throat. After that hospitalization I feel like I just never got better. They also did an upper GI scope while I was in the hospital, which showed my esophagus spasming. So they put me on antispasmotics and prilosec. I have stopped all those meds now, my esophagus and the swallowing difficulties that caused have gone away for the most part. I have mild indigestion so I just watch what I eat, but don't take meds for it.

I don't have health insurance at the moment since I quit my job...getting any more testing would be costly I'm guessing.  

I've always suspected TMJ as I have the jaw pain and ear pain and the night guard does help me.

The upper back pain was helped by a chiropractor years ago but I was scared to go back because after he adjusted me I had vertigo for months which caused my anxiety to be really bad. So I'm terrified of chiro's now...as vertigo is an awful, awful feeling. So I get the deep tissue massages and ask for prednisone when I get real bad (the prednisone helps wiht the fluid in my ears too and helps them drain...so it provides major relief in that area) but even when on it I still wake up stiff and my joints pop and crack all over. I just thought I would not have to be dealing with this stuff til I was at least in my 50's...not my early 30's.

Hopefully I can get health insurance soon.

My PCP has prescribed me cyclobenzaprine which I take nightly and low dose xanax (helps me sleep) to also take nightly. Both of those have helped my dizziness (dizziness may be caused by tight muscles in my face because the cyclobenzaprine did calm the dizziness for me) and maybe the xanax helped my anxiety which I guess could also cause dizziness so I've read.

It sounds like i need to ask to see a neurologist? How exactly do you pose that to your PCP who thinks he's doing a good job taking care of you?

Oh and another question. Is cracking, popping of joints a fibromyalgia symptom or is that more arthritis/inflammatory. Every single joint pops...I just walked out of the kitchen and my left knee and right ankle pop. I swear you guys i sound like an old woman...right? My fiance just laughs at me and thinks it's cute...I'm like no this is not cute! My back cracks, my neck cracks when I turn my head my jaw pops my elbows even my shoulders crack every morning. What gives?

 

Post Edited (ArbyBarbie) : 8/30/2013 11:33:25 PM (GMT-6)

Posted 8/31/2013 11:04 AM (GMT 0)
Oh my gosh, you sound like me many years ago. I had it all. The upper back pain the neck pain, the clenching of my teeth at night. Had to wear a nightguard. I had problems with my ears. And also anxiety. Didnt know I was having anxiety. I was a busy mom with 3 small children, and just thought it was a part of life. Untill, BAM I fell flat on my face on the floor. My adrenal glands were over taxed and shut down. In other words I had a hudge panic attack that lasted 3 days and nights. Never knew such things existed as anxiety and panic attacks. It took me 18 months to recover. It was really really hard. I couldnt even look up at the sky without a panic attack coming on.
I dont mean to scare you. Not everyones body shuts down like mine did. I just want you to be aware that the symptoms you are having means you are over stressed. I was told that the clenching of my muscles at night was a sign of an overstressed person. My adrenal glands had been working overtime for years and just could not take it anymore. Of all the therapies I went through, Yoga was the one that really helped my body relax. I even became a Yoga teacher. Today I have no pain in my jaw and ears, and my muscles are relaxed and flexable. I havent had anexity or a panic attack in years. I do now have Fibro, which is a whole nother story.
Posted 8/31/2013 7:26 PM (GMT 0)
Hi, ArbyBarbie, and welcome!  I don't have TMJ or headaches but I do have a lot of back, shoulder, and neck pain.  I massage the trigger points and that helps me a lot.  I had a frozen shoulder and was able to make that all better by massaging trigger points.  I bought a book on Amazon called The Trigger Point Therapy Workbook that shows where the trigger points are for certain pain issues. 

 

In Fibro 101 there is a link to A Thorough Explanation of Fibromyalgia.  Also there is a link to What Else Could It Be.  These would be good for you to read to give you some idea if fibro is what is going on. 

 

I do hope you are relaxed and have no flares for your wedding day.  I think you will be just fine.  Adrenaline kicks in and the happiness and excitement probably will make you feel great!

 

Prednisone is a steroid.  It's not good to take long term.  I had to take it off and on for Crohn's disease.  Yes, you do feel really good....at first.  I remember taking it and I landscaped my front yard, by myself, over the weekend.  I had so much energy.  BUT, I was given high doses for another problem.  I needed to take the high doses for a month and my immune system seemed to shut down.  I was catching everything that month and spent it on my sofa sick as a dog.  It took me four months to wean off the dose and I haven't taken it since.  Also, Prednisone and Prilosec can help cause osteoporosis so you do need to be very careful of it.  It is a good medication for short term but isn't given for fibro...that I know of.

 

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

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