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I've got a problem

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Old 11-03-2012, 07:05 PM   #1
Join Date: Nov 2012
Location: Nashville, TN
Posts: 2
ckd33291 HB User
I've got a problem

I apologize for the inept writing. In a lot of pain and just need an answer. I am in extreme pain all the time.


About 4 years ago when I would walk after a mile the top of my feet would cramp. First symptom I ever saw of this problem. As time went on, cramping occurred all over the feet. Also legs and feet always fell asleep. Took forever to wake up.

About 2 years ago got diagnosed with a herniated brain. I had an ear infection that caused a hole in my skull along with a CSF leak. That was all put back together. The infection was cleaned out.

Well six months before the herniated brain was diagnosed I started to get hot all the time. I began to run the air conditioner even when it was 10 degrees out side. I was burning up. No temp was ever found even though I was sweating and burning up. Now I have gone the other way with temp. Always cold. During last summer when it got hot my skin felt like it was on fire. Very painful. I live in constant pain. My feet are always cold from maybe a 1 inch before the toes to where the toes end.

Within the last year my walking has gotten worse. After a 1/4 of a mile my legs will get heavy, feel swollen even though they are not, cramping in feet and legs. Just bad stuff. Always feel like I have the flu. Very worn out.

I can't write any more. My hands cramp up so bad that I can't write but I can type.

Now all my teeth feel like they need a root canal. Oh man, worst pain I ever have had was today from my teeth. By the way, teeth cleaned a month ago and were in excellent shape.

I can't take Lyrica, Neurontin, or Cymbalta. Lyrica and Nuerontin cause fluid to build up in my chest. Hospitalized from Neurontin 2 weeks ago. I had fluid around the lungs and heart. The doctor said it can cause swelling so it can cause fluid buildup according to him. Heart and Lungs fine. They looked at those and everything good. Cymbalta made me very depressed. I don't want that again. I have not tried Savella but with my history probably a bad idea. I know there are vitamins out there. I am not sure how good they are. I start one tomorrow - I can't think of the name. . I am just in a lot of pain. Right now taking pain medicine from a surgery I had recently. Hopefully can get off that soon but to me this is not living. I don't want to live this away. I am now getting a handicap parking permit because walking is hard very hard. I am using a walker most of the time and that is not good when you are in your 40's. I may be getting a wheel chair soon. I go for an evaluation in a couple of weeks. I am getting this because of pain and always falling.

Has any body experienced pain this bad? If so what have you done for the pain. This cannot be my future. If so life is not good.

Finally, I was diagnosed with Neuropathy but it really sounds like Fibromyalgia maybe something worse who knows.

The following 3 users give hugs of support to: ckd33291
catkaru (11-04-2012),lehcar (11-04-2012),mom477 (11-04-2012)
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Old 11-03-2012, 08:25 PM   #2
Join Date: Jan 2010
Location: Colorado
Posts: 383
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Re: I've got a problem

What doctors have you seen? You symptoms are very very similar to mine. My quality of life is just going downhill. I am 35 and have a handicap permit and use a cane to walk. I am close to the point of not being able to drive. Me not driving will affect my kids as well as myself. I know it isnt safe for me to drive. I have arthritis and neuropathy in my legs and walking is very difficult.

See a neurologist or rhuematologist to see about fibromyalgia. Hang in there and remember that YOU are in control even when you dont feel like you are

Old 11-03-2012, 08:35 PM   #3
Join Date: Nov 2012
Location: Nashville, TN
Posts: 2
ckd33291 HB User
Re: I've got a problem

I appreciate the kind thoughts. I have seen a neurologist. Praying and hoping for something better than this.

Old 11-04-2012, 07:41 AM   #4
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Location: blue lakes, northern california
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Re: I've got a problem

i would suggest a test for sjogrens. i have it and some of your symptoms are much like mine. it's a simple blood test. well 4 vials of blood. giggle.
don't get the wheel chair. please. been down that road and coming back is harder than pushing thru. if you gotta fall learn to fall. i did. i don't get hurt now. between the cane and the chair on wheels i really atrophied and that's painful to undo.
when faced with something you cannot control peace lies in self education and adaptation to the situation.

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