Beyond belief

[navydad721]

I am tired of the burning,, the stomach spasms, the cold intolerance,, the stumbling around,, being told its fibro,, have had every test known to man,, been told its sjogrens,, neg blood work, neg lip biopsy,, salivary galnds gone from chronic inflamation,

[Family2011]

Neuropathy is usually caused by another condition, so if you do have neuropothy there is something else. They may have damaged something when you had the surgery. You may want to pull up your medical records and look at the operative reports to see if there was a problem during the surgery.

[sara12345]

Fibromyalgia is a diagnosis given when all other diseases have been ruled out.  People with fibromyalgia typically have a host of other problems caused by the nervous system overreacting such as chronic fatigue syndrome, irritable bowel syndrome, chronic headaches, chest pain, reduced pulmonary function, esophageal dysmotility, etc. and etc. Also sufferers frequently have hypersensitivity to noise, odors, heat, etc.  

Have you tried any of the medications that treat fibromyalgia.  A high dose of Trazodone completely took away all my symptoms which were a lot.  I gradually got some help at 25 mg/night and gradually over 9 years increased it to 150 mg.  I could have raised it much more quickly.  And it's a wonderful sleep medication.

Lyrica and Savella are two meds FDA approved for fibromyalgia, but so do anti-depressants which have pain killer effects on nerve pain.

I don't know if you have fibromyalgia or not, but you owe it to yourself to try treatment for it.  At least it might help some of your pain.

And it sounds like you might have an intestinal problem as well.  Has anyone diagnosed that problem for you?

If medical expenses are a burden to you, anyone can get medicaid if they have no more than $2,000 and I believe a car.  But you would need to give all your money and property to someone you trust.  A spouse who has tons of money does not impact you getting medicaid.

Good luck to you. I really feel for you.  

[TheLightSeeker]

Hey navydad,
You have a multi-systemic chronic infectious disorder. No labels.
You must go to an infectious disease specialist with the LLMD designation and request an IGENEX-only- complete Lyme and Co-infection Panel.
The most likely positive findings will give him the exact pathogenic infection
you have, so he can start treating you properly.  
Do whatever it takes to boost your immune system .
Stress is compromising your immune system greatly.
You will need a strong immunity and the right medical treatment in order to get out of this.
Wishing you well.
Niko  

[navydad721]

If I have fibro,, does it cause burning in the arms,, cold hands,, numb fingertips,, legs that fel like cement, cold intolerance,, severe neck pain and then the numbness when standing up,,
  It hurts to even have my blood pressure taken,, I cant walk more  then 50 feet without wanting to fall over,, My wife had to help me back into the house yesterday, I was stumbling around the yard,, trying to untangle a extension cord,
  numbness and burning in the saddle area,, before I was constipated,, now I have to go 10 times a day,, in fact as soon as I get up, my colon will scream till I go to the bathroom,, I just have a hrd time thinking this is all fibro related,, but I have been to so many doctors,, when I called teh neuro,, she said I just looked at your previous scans,, I dont see any cord compresion,, but that was 2 years ago,, I had a scan done at the Mayo clinic last year,, they said,, minimal compression of the cord,, I guess eventually I either get better,, which I doubt,, or I become a paraplegic

[navydad721]

I had chiari surgery in 09, ended up two weeks later with menigitis, spinal fluid pouring out of my neck the patch had failed,, spinal fluid was bloody,, they had to redo the surgery, now they tell me that since teh surgery didnt help with the burning, that its most likely nuropathy,, I quit trusting doctors,, I worked in the yard yesterday,, and cleaned up around tehhouse,, today I am stumbling and falling,, constant numbness in the legs, hands, arms burn when ever I use them overhead,, I wake up at 3am everynight with pain in the arms,, I dont know whats going on,, its almost to a criticl point,, and everytime I even think of going to the ER,, I know whats in store,, the run tehre stupid blood work,, and tell me your fine while I stumble out the door

[Family2011]

Do not give up. We have all had our moments of just wanting to throw in the towel. I know that MRIs can be extremely expensive, but you may need to have one to rule out Chairi Malformation or other problems. I work at a hospital and they have programs where they just write off the bill if there is a financial hardship. They actually paid off $4000.00 of my bills. Please look into that. I will pray for you. If medications are not working look into home remedies such as heating pads, massage, accupuncture, etc...Maybe they can give you some relief in the mean time.

[TheLightSeeker]

Hey navydad,
and Welcome to the Forum.
I understand where you're coming from.
Conventional medicine is like that. Mayo clinic is part of it.
Please take time to read my Oct 25 reply to "Fibromyalgia...is this the end"
for relevant info. Your "living hell" situation has a definite explanation.
You are not alone.
I urge you to explore the Fibromyalgia and Auto-immune Communities and the various postings to get a pulse of what is going on.
After you have done this, please post again with your questions and comments.
We are here to help and support one another other.
Some of the members are extremely knowledgeable and have been through
"the ropes", with invaluable information that you may never get directly from your Doctors that are "treating" you.
So, do not despair, hang in there and you are going to get all this figured out, sooner or later.
Blessings
Niko

[navydad721]

I have had every test known to mankind then some,, even went to mayo clinic,, I have had a punch biopsy done on my leg which showed small fiber neuropathy,, I have been on somany pills that it takes up w whole sheet,, I have been told its Sjogrens syndrom even though my bloods are negative,, rheummy believes i have it,, the burning is nonstop,, now  neuro surgeon says there is no way neuropathy can cause all this,, he thinks its some compression of the cervical spine,, and  wants MRI;s done,, ya Like I can afford that,, now the neuro says,, according to the scans of 2009,, you dont have compression,, I wonder what these people think at times,, its almost like I want to give up,, I just want someone to say,, here is what you have,, I am tired of the infections in my sinuses,, 7 surgerys,, sitting on a toilet screaming to have a bowel movement while I get drainage choking me,, as soon as I stand up,, my whole body starts to burn,, just tired of the whole mes,, seen so many doctors now they just say stress,, no,, I dont think so,, and yes I know stress can do some strange things,, but not like this,, this is a living hell,,

[Family2011]

Hi, welcome to medhelp. One of the primary characteristics of fibromyalgia are trigger points. I believe there are 18 trigger points. If you are newly diagnosed you may want to check out http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm just so you can see how much fibromyalgia effects the body. I thought it was helpful. It also has a list of associative disorders such as irritable bowel syndrome, etc... There are medications and therapies available to help deal with the symptoms, but before taking them you should look into the side effects. Take care!