fibro vs myofacial

[klivesay]

Hi everyone,
According to my report i read from my Pain Management dr's they are looking at dx'ing me with fibro.  I dont know what is going on, all i know is i am getting worse.  Please read my post and see if anything pops out at you.  I was injured at work in May 2008, until then i was perfectly fine, i was very active, worked hard, i drove a 18wheeler all over the country. Since May 2008, i have been dx'd with cervical/lumbar degenerative disk disease, cervical/lumbar spondyliosis.  I am on the Fentanyl pain patch, lyrica, tegretol, paxil and klonopin (last three for my bipolar).  I am in Physical therapy right now, it isnt doing anything but causing me pain, she is just working on releasing my muslces, no physical stuff for me to do.  She is very concerned to what is going on with me.  Here are my symptoms
extreme pain
eye, eye socket pain, neck pain
fatigue, body aches so badly, body jerks (i mean hard and bad) like when my leg does it i could easily hurt someone lol.  serisouly now.  Pain in my left hip, leg, both legs hurt all way to toes.
I have to walk with a cane now, i cant walk properly, i have slap foot with my left foot. i either shuffle my feet when i walk or i have problems with my gait.  I can only walk very very short distances then my legs feel heavy and WILL give out.
my memory is shot, concentration, i have brain fog really bad
but i also cant talk phsically for very long, i am unable to get my thoughts straight sometimes but also unable to form the words.  MY throat will start hurting badly when conversating then my words start sluring , slower and slower my words come out, until i am unable to talk at all.
I have had MRI's, they showed the DDD etc, also showed a thryroid nodule and throat cyst, i cant get to the dr for those right now due to money issues.  I am supposed to have a biopsy done when i am able. All my thyroid labs came back good.  I have seen a neurosurgeon for slapfoot, he said not a surgical candidate right now.  I cant do anything hardly anymore, heck i have to have help taking a shower, my energy zaps QUICK then i will fall.  I dont know what is going on.  i am scared.  tired of not being able to take care of my home, my husband has to do everything, cooking, cleaning, laundry etc.  I try to do simple things like dishes at night and pay for it dearly with pain.
Oh ,  My vision.  First it started off i was having problems reading, so i got reading glasses, they arent strong enough anymore.  i get blurred vision ALOT, eye pain etc.
ok enough for now, sorry...please someone help!

[sweetpea053]

I know this is more than a year later, but if you still have no conclusion to this may I suggest two things.  One is to be tested for Myasthenia Gravis and the other is to be tested for Vitamin D.  Many of your symptoms sound like Myasthenia Gravis and I also have very similar symptoms and when tested, I had absolutely no vitimen D in my body..not even enough for a trace on the test.  My doctor put me on Vitimen D supplements and I immediately started getting results...  my memory has improved, my all over pain is better, in general I feel better than I have in years.  Even if it is not the essential diagnosis, it can relieve some of your symptoms and at least make life bearable.  Good luck and God bless.

[klivesay]

well, my pcp said according to all the mri's,  ct's etc etc they did when i was in the hospital i have fibro, myfasical pain syndrome, cervical and lumbar spondylosis, but the new one and the most important and the one that makes sense is conversion disorder also known as hysterical neurosis.  It is a very real disorder.  Basically it is because of the emotionally and verbally abusive marriage i have been in, it has been really bad the last few months, thats when i started having the extra symptoms of speach issues, gait problems, double vision, seizures (non epileptic).  and the body jerking.  all that i go thru are very very real, but the cause is the abuse.  i am now separated so i can get better.  he admitted that i cant get better with him here, and without him getting help.  so i am trying to figure out how i am giong to get to my appts since i cant drive because of the prior listed physical problems.  i dont know what i am going to do on alot of things  but what i do know is i am working on educating myself on this disorder and i AM going to get better.  So i can have my life back.  I may not get completely better but ya know i am going to fight it with all that i am.  thank you all so much for helping me

[VaBreeze]

The twitching can be caused by Restless Leg Syndrome.  While this more frequently is thought of as happening when one is laying down, it happens while one is awake and sitting as well.  I have this...I also have what is called Periodic Limb Movement Disorder where my legs, arms, or one side will kick out on its own.  I could no longer fall asleep due to the violent spasms.  Then I began having symptoms while awake.  I take medication each night in order to get a few hours of rest.  I've been on these for years and I still have nights where I will wake up, but at least i'm able to fall asleep.  

Another prob. that can arise is benign fasculations (involuntary twitching of the muscles that can't be explained).  I think this is along the same lines with the RLS/PLMD.  From your description of "It takes hours for them to quiet down"...this is exactly what those with RLS say.  There is some type of neurological misfiring causing this.  Maybe a muscle relaxer or anti-anxiety medication would help in this area.  You could speak to your doc. about the possibility of this.  

Please keep in touch to let us know how you are doing.  You're in my thoughts and prayers.

[stinkypinky]

Hey there!  I have the body twitches as you do.  I get them when I have been sitting for a long time and when I go to bed.  It takes hours for them to quiet down.  Last summer I had to be hospitalized for two weeks because the twitching became so violent.  The second week of hospitalization was spent in rehab to regain use of my muscles.  Do you also get twitching in your fingers and toes?  My fingers,hands and toes can twitch a mile a minute.  No matter how hard I try not to do it I can't stop it from happening.  Since all tests are negative, of course, my neuro and rheumy say it's just fibro.  I have just started to take Lyrica and Cymbalta: hope they help.  I feel your pain and frustration and pray you will find relief.  God bless,  stinkypinky

[ron923]

i had a herniated disc and had an epidural injection done, a few days later i develped a sore throat and weakness. My Dr. treated it as a cold or flu. Then the weakness , pain and exhaustion developed. I rested in bed for a week and my symptoms are not changing. Ive tried to fugure out what's goiing on with me, it's been 6 weeks. It definately sounds like fibro. I hope you find relief. If i find something that helps my condition i'll let you know. Good luck.

Ron

[Sunshine1960]

Dear klivesay -
I agree with VaBreeze, we all here feel your pain. Everyday we try to live our life as comfortable as possible. I was able to handle to pain & upper body jerks for yrs until I had breast cancer surgery (3 in 10 mths), along with radiation, then begin taking tamoxifen - then i couldn't even move let alone walk. I force myself to work everyday, I still don't know how I do it. I tried physical therapy and after 4 wks the pain was so bad - I stopped. They stated they were also working the muscles - couldn't move the next day. I wish you the best in trying to find the right dx and then the right meds to help you live a better life. Everybody here will always try to help you and/or put you in the right direction. Alot of pain for me now - just got back from a 7 hr drive from my daughter's house in KY to help her get ready for her wedding which is 5/16. I am having a very hard time with finding the strength for this. Please keep us informed with your progress - I wish you luck. God Bless, Sunshine

[klivesay]

i am having a bad day pain wise and such but i wanted to answer your question of my leg jerking.  It isnt only my leg that will do it.  my head, upper body , arms, legs, hands and feet will do it.  not all at the same time mind you.  It happens when i am awake, sitting down, standing up.  But mostly sitting down.  They are what i call violent jerks, very intense ones.  not just a lil jerk.  They are so exhausting to me when they happen.  I do it in my sleep also , they wake my husband up all the time.  I dont get them like someone who has restless leg tht happens when they start to relax or fall asleep.
I will answer your other ones tomorrow hopefully.  They will take a bit longer.  
and i just dont have the strength right now
thank you so much

[VaBreeze]

We truly can relate to the pain.  I think most here suffer on a daily basis, to some degree.  You aren't alone in that respect.  

You spoke about your leg jerking...when does this happen?  May I ask how you injured yourself at work?  I'm wondering if the injuries may be involved in your condition now.  When did everything begin and has it ever had days where it let up or just gotten progressively worse?  I think it would be good to take your MRI's to your neurologist as well. It can't do any harm to have another person review them.

I will continue to keep you in my prayers.  Please keep in touch and let us know how you are doing.  

[kiddthekatt]

Good morning;
   Like you my symptoms didn't start until after I had multiple knee surgeries. Although I have had body aches, some severe all of my life. I have been tested for everything possible, and was just in the hospital for the same testing from the ground up and still everything was negative or normal.

   This disease will take everything out of you. It has no pity on any of us unfortunate enough to have been dx'ed with it. Like Breeze said, have them run the Lyme test and make sure that they haven't missed anything. Take care of yourself.

gentle hugs
Angel

[klivesay]

Yes, i had a head Mri also, my dr at the time was making sure i didnt have any bleeds because of my talking difficulty that was becoming worse.  I gave the scans to my Pain management dr when i first started seeing him, he didnt say anything about something being off.  I havent done a Blot test yet for Lymes, i am going to ask my PCP to order one.  
I am frustrated, but more so worn out.  Every minute of the day i hurt.  i cant imagine what the pain would be like right now if i didnt have my pain patch or lyrica.

My Physical therapyist said that all she can do it do the ...oh, i dont know what it is called, where she works on releasing my muslces by massage i guess is the way to explain it.  My ability to walk is almost gone now.  sometimes i shake so badly (arm , or leg mostly).  

[VaBreeze]

The slap foot sounds like a sign of something neurological going on.  Did they do an MRI on your skull?  Did they do a Western Blot to check you for Lyme Disease?  Fibro is a dx of exclusion...look for any other possible illness that could cause this first.  If nothing is found then they lean to the FMS.  

An injury has been associated with triggering FMS, so yes, that does occur.  I'll wait for your response about the testing to see what else may be available to you.

Take care.