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I think I might have fibro?

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Posted 5/25/2011 2:26 PM (GMT 0)
I've had vague symptoms for over a year. I started with months of extreme anxiety, then paresthesias and back pain. I started twitching all over and started noticing a leg that felt weak and constant muscle tightness & back pain. Low back pain, shoulder pain, feet pain, hip flexor pain, fore arm pain, toes and fingers head and neck, butt. My back, legs, hip joints feet toes and shoulders & hands are pretty constant. The muscle twitches are pretty constant too. I do get a weird pain or irritated feeling in my legs kinda like my nerves are charged or irritated or something. it affects the tops of my feet and my toes. Anyone experience that? Anyway, I have had times when I feel achy when I wake and it goes away but days like now where it suck. My lower back, butt and legs are aching like an SOB. my hip flexors feel like I have arthritis or something. I have been to a neurologist several times, EMG, MRI, blood work. I have 4-5 bulging and herniated disks that show on Mri & emg but other than that I'm normal. No fibro diagnosis but I honestly don't go to the dr a lot. I do take norco everyday for pain. Other things I notice are jaw stiffness and pain and mouth or tongue feels dry or weird when I talk. I can say everything but it just can feel off all of the sudden. This has been more than a year and I'm finally tired and just want answers. Does this sound like fiber, If so, what are fiber doctors called? Thanks for any feed back.
Posted 5/25/2011 2:45 PM (GMT 0)
Have you seen a rheumatoid arthritis Dr? That's who diagnosed me and others on here as well. The reason I went to her was my dr said he thought the soeness in my hips and hands were arthritis, and I had markers in my blood work as well so he sent off a referral. If you get a chance to read fibro101 thread there is so much helpful information in there.
Take care
Rose
Posted 5/25/2011 10:07 PM (GMT 0)
There is no fibro doctor.  I see a board certified Internist, others see rheumatologists or neurologists.  You just need a doctor that does treat fibromyalgia patients.  Ask first before making an appointment. 

 

Previously you said you read Fibro 101.  You might want to go over that again...especially the links Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You probably will see yourself there.

 

I hope you find a doctor that treats fibromyalgia and will work with you.  Let us know what happens because we do care about you.

 

Sherrine

Posted 5/26/2011 12:02 AM (GMT 0)
I was so preoccupied with life threatening illnesses, I didn't notice the similarities of fibro. While reading a post from a person with BFS i noticed they had fibro too. They also stated that their neuro thought that all of these type of syndromes were related and intermingled and it took him a long time to be diagnosed. I never saw or heard this before. When I went back and read 101 and posts from other people all over the internet about pain with twitching and dry mouth or weird mouth feelings, parasthesias and even anxiety which was my first issue for years, a light went off. I will definitely follow up with a Dr that treats fibro for sure. I have been on pain meeds for a few years so I think I wasn't really "keying off" on the pain. I always actually attributed my achiness to my pain meds wearing off. I think one of my neuro's might have been thinking fibro because he prescribed me gabapentin and said" just take it and see if stuff settles down". When I read about how this is treated I thought again "wow, maybe this is my problem" I never did take the gabapentin, i'm kinda cautious about new meds. In the mean time, can anyone relate to what I've said. Do you guys really experience pain along with all these funky symptoms. Do I sound like anyone else. I'd love to here feedback as I've been flying solo and in despair for so long. Heck my back is beginning to ache as I sit here and type at the computer but it often does. Any "shout outs" would be great. I know I'm rambling but I feel like I'm not alone for the first time in about a year. Thanks for the info thus far.
Posted 5/26/2011 12:29 AM (GMT 0)
Hi German~

If it's fibro you have then you are not abnormal at all, at least not for those with the disorder. Most people go through years of testing and doctors before someone will finally realize what you have.

Gabapentin is one drug that is often tried for people with Fibro but as an off-label use. It's an anticonvulsant but is helpful for other uses too. It's one of many drugs that doctors use to combat the pain of fibromyalgia. As I'm sure you're aware, there is no cure for fibro and treating the pain can be a nightmare. Often doctors are afraid to prescribe pain medications for fear of addiction. The facts and studies show addiction to pain medication for those with chronic pain is less than 1/2 of one percent. Now, dependence is there but that's the same with many drugs. Those who need pain control medications often get shoved in with addicts and druggies and doctors fear retributions from the federal and state authorities. <you can thank your local junkies and the media for all of that>

Sorry for the babbling. Glad you're here and you're never alone now. Someone will always be here for you.

Chutz
Posted 5/26/2011 2:15 AM (GMT 0)
From what I know of my 10 years with Fibro the " I do get a weird pain or irritated feeling in my legs kinda like my nerves are charged or irritated or something." type of pain is classic. Also the wide spread nature of your pain lends itself the Fibro as one of its definitions " wide spread pain".

I was also diagnosed by a rumy who did the pain point test. I had all of them...

A word of advice...don't take any grief from your doctors. Push back and be in charge of your health issues or you can be led around in circles for years. That is what happed for me and it was horrible. Good luck. sad
Posted 5/26/2011 3:52 AM (GMT 0)
hi german

wow...well if you can read some of my old post you will see similarity.
i have this too all over like this...twitching all over and lots of sensory symptoms.
the feeling in your legs..is it like vibration thats inside or tremor like?

have you had the blood test for isaac syndrome. blood test is called VGKC (volted gated potassium channel.)
its an autoimune towards ion channel that can suse these symtpms. i did mine was negative. just another venue to check

do you have any other isssues like thyroid or diabetes.
were you on any antidepressants or types of this before twitching stareted.
as twitching can be sideeffect of those.

mine came out of nowhere when i was 19. never took any meds except antibiotics and congestion meds.
started in my neck, a strange electrical feeling that zapped in arms. then stiffness, twitching, spasms...all over. just like yours. one place to another.
for me flu shot made everything worse.


i know what you mean by the ache..its horrible. like bones can even break!
you have tightness. is it like squeeze, almost like how it feel blood pressure cuff feels.
i have severe tightness too and pulling spasms all over.
my tightness is severe top to bottom constnt.

i have all test negative too except sed rate keeps coming bit elevated.

my docs wont say fibro, they keep saying i have too many symptoms with nerve so i dont know.
its hard

tulips
Posted 5/26/2011 11:35 PM (GMT 0)
Hey tulips, tell me more about your issues. Did you have one sided issues. I remember, in the beginning, I had a very subtle tingling feeling on my right side in my leg and arm. It went away and came back and stuff pretty much kept progressing. I still have no clinical weakness and no physical evidence of anything as far as my Doc's are concerned. Heck, I went to the gym 4 days ago and though my right side is shaky, it's still my stronger side and even fatigues slower than my left. Have you ever had mouth issues? Sorry for the bombardment but like I said, I'm just trying to get to the bottom of this.
Posted 5/30/2011 11:42 PM (GMT 0)
Hi German

Sorry for just saw your post today.
When it started for me it was one sided.

Well one fine day I wake up and I have strange sensation on back if my neck.
It was not like a normal pain but a electrical sensation. I couple touch metal as it would zap electrical sensation up the arm. Them I started having tightness in my throat as if being squeezed. Then twitching... This went on and tingling spread all over with stiffness and muscle pain.
I had lots of Wierd nerve stuff like water trickling down. Burning under skin. Even on tongue. Then I get a flu hot in 2003 and that send me in a spiral I was not in before. Everything magnified!! Severe cramping severe twitching like popcorn popping. Severe migrating stabbing sharp pain and Deere tightness and deep ache all over. Even in my face and throat. Face muscles severely tight.

So I am still undiagnosed. Doc says idiopathic neuropathy with motor symptoms too.
Now I get severe burning on my feet and in the shower water feels like nails falling.
Severe vibrations that are actually very fast costant twitch.
I can feel them like fast tic tic tic and I looked closely on my feet and I could see it moving in a small area. Very fine twitch but super fast inside.

So who knows. I have had so much test I don't know what to do
Posted 5/31/2011 12:43 AM (GMT 0)
tulips, you sound about 99% like me. The little quick muscle tics, I get em. The burning tongue, I get it. The water feeling I call a flicker or pop rock feeling I get, even on my tongue. I actually had geographic tongue a couple times. The tremors inside I get too. My back hurts, butt hurts, thighs hurt and feet hurt. I get this weird tightness on the top of my right foot in a straight line from my ankle to the knuckle of my big toe. My tendons even click there sometimes. I get right arm & leg shakiness( feels weak) but go to the gym and my strength and stamina are better on that side. I get twitches all over too. I do have like 2 lumbar disk bulges, 2 or three thoracic bulges 1 cervical herniation and many of my disks have spondylosis( I think that's correct), so my tests showed evidence of those issues and nothing else. I have been to a slew of doc's 2 neurologists 1 specializing in ms and neurological disease and after 9 months, NOTHING. I shouldn't grip I guess but limbo sucks. I never thought of fibro until I exhausted everything else. I'm happy to talk to you. I'm not happy you have this stuff but happy you had these type of symptoms and are still around. Sorry if that sounds selfish but I've been thinking the worst. Anytime you want to chat about your issues, I'd love it. Thanks for answering. God Bless you.
Posted 5/31/2011 1:27 AM (GMT 0)
Hi

Ya its hard! 13 years with this. I was newly married at the time and this has taken such a beating!

Well plus I also have lots of muscle spasms an cramps. Like a pulling sensation and it hurts. It's like pull pull pull feelig. At times it's like dominoes where one spasms induces another and another and ends up all over.

For years my neck MRI were clear and in 2006 it started showing mild to moderate bulge in three spots but boning is pressing on any nerves.
That's the same time my necks spasms got worse and everytime I turned my neck I started hearig crunching crackling spun in neck.

The other thing is I have spend whole life with seosonal allergies, sinus stuff. I don't know how that has effected my neves. I went years not being able to smell or breath thru my nose.

I wonder if I have sjogrens as I have dry mouth and severe dry skin and other personal areas.
My blood for this is negative but lip biopsy is better which they haven't done yet.

So plus my sed rate shows elevation so perhaps some inflammation or autoimmune process going on.

Have you gone to endocrinologist? I have seen thyroid or prediabetes even cause this.

There are some good antibodies test thru Athena diagnostics for nerves but they are expensive and I don't have insurance right now.

If you have insurance ask your doc o run a panel to see autoimmune towards nerves.

Have they looked at your b vitamins.

Plus what was going on when all this started. Any history of antidepressant as they can cause these symptoms too.
Even lots Antibiotics.

R u taking any meds?

Tulips

Take care
Posted 5/31/2011 3:36 AM (GMT 0)
clonazepam and norco for pain. Do you feel like your mouth is off or pronouncing words feels different. I still speak fine I just feel like my tongue is burnt or dry which makes my talking feel weird. My jaw is also often tight. You really are one of the only people I've talked to that sounded a lot like me.
Posted 6/1/2011 4:04 PM (GMT 0)
thanks tulips for your post about the tics being onesided.I thought that it was supossed to be bi-lateral,thats why I was posting in the ms forum cause really I was scared about ms or als and my neurologist won't call me back.My tics or twitches are getting worse and they are only on the left.while I am glad my lung issue has a reason now,this is scaring me but since you said that you started with one-sided tics it doesn't make me feel quite as anxious.
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