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Full body pain

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I have been SUFFERING for three years with terrible pain all over. I get sharp stabbing pains in my face, behind my ears, on top of my head, my temples and the back of my head. They last anywhere from a few hours to a few weeks and when the pains are gone the spots are sore for days. The last time it happened the pain meds I take (tramadol) didn;t even touch it and I went to the emergency room and they gave me an injection of demerol.(sp?) I also have what I describe as restless leg syndrome that is from my toes up to my chin. I take the tramadol 3-4 times a day to control the 24 hour symptoms that I have with this. My doctor has sent me to many specialists and aside from a trapped ulnar nerve in ly left arm that I had surgery on this past feburary and a tear in my right shoulder that needs surgery, they can find nothing else wrong. I get so bad at least once a week that I can't walk. My doctor just keeps giving me different meds to try but I keep ending back up taking the tramadol because the others either don't work, make my symptoms worse or I have a reaction to it. I have tried: lyrica, morphine, neurontin, elivil, vicodin, xanax, cymbalta and a few more that I can't even remember.
I said all of this to ask if there are any tests that I should be specifically asking for as it seems my doctor has given up on me. I have had what seems like dozens of blood tests, mri's and ct scans, x-rays, cortizone injections. There has to be something that is being missed. They did try to say for a while that I have fibromyalgia but I have not one of the tender spots and my symptoms and pains don't match up. If anyone has an idea please respond as I am only 35 years old and am scared out of my mind that no one is ever going to find whats truly going on and I will only get worse. Thank you in advance for any help you may be able to give. Smile
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First Helper User Profile zigemyster
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replied June 21st, 2008
Not saying that this is what you have but, I have been going through the exact same thing and my nuerologist seems to think that it is possible ms since it runs in my family. MS can take years to diagnose because, sometimes it doesn't show up on the MRI for years and you have to have at least two lesions on your brain before they will diagnose it so, just a thought.
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replied June 21st, 2008
have thought about possible ms
I have brought this up to my doctor but he just isn't really interested in finding anything. I know I have to find a new doctor but am so tired of it all that I keep putting it off. Plus I know that it will start a new round of tests and though I know I need to do it I am just not up to it right now. Thanks for the reply and I wish a peaceful nights sleep for you tonight.
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replied March 18th, 2009
Same issue with me
Can you please tell me finally what worked for you? I have been suffering same kind of pains all over my body. Your advise will be grealy appreciated.
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replied March 18th, 2009
Finally got diagnosis
I finally got an answer and it turns out that like the other person who responded, I have Multiple Sclerosis. Have you been to the doctor yet? Are you taking any medications for it? It can take some time (over 3 years for me, I have read posts from others that said it took up to 10 years for them to get a diagnosis). My advise would be to just keep pushing your doctors for an answer. A lot of doctors are happy with just writing a prescription and sending you on your way without doing too much work on actually finding out what is wrong. A lot of these conditions are hard to find and it is just a matter of eliminating them one by one to find an answer. I hope you can find some relief soon. I can tell you that hot baths have saved me from horrible pain many times. I take 4 100mg doses of Ultram daily and that helps to take the edge off of my pain. Since it is a very mild pain reliever and is non narcotic, I don't feel any drowsiness from it. I also take a low dose of Xanax. It actually acts as more of a pain reliever to me than anything. Because of my condition, my muscles feel tensed up and tight constantly. The Xanax helps to relax my muscles so it relieves my pain from being so tense all the time. I hope this helps a bit. If you have any more questions, feel free to ask Smile
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replied May 5th, 2009
Better drugs for pain
If your doctor is up for it, or you can find a doctor that is, try Oxycodone. It's the generic of Oxycontin. It can be found in 30mg tablets that are instant release, and costs much less than Oxycontin. They can be cut in quarters. There is a nation-wide shortage right now and I can only get the 30s. I cut them in half.Yes, it is habit forming for some people, but not everyone. I have very similar pain, and so far it is the only thing that helps that doesn't make me throw up.
For your tight muscles, try Flexeril. It is a muscle relaxer that doesn't make you sleepy. (I use Xanax for sleep and the occasional anxiety attack).
Did you get a second opinion? MS seems so easy a diagnosis. I looked it up in my Merck Manual and there are a few symptoms that I lack for a complete diagnosis.
And, as you pointed out, the doctors are in a big rush to get you out of there, so it's hard to find the right thing.
(Pardon me, all you doctors reading this. I have just had one bad experience after another and that only adds to the misery).
I wish you well. I will post more as I learn.

Aurelia5
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replied May 5th, 2009
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Re: Better drugs for pain
Aurelia5 wrote:
If your doctor is up for it, or you can find a doctor that is, try Oxycodone. It's the generic of Oxycontin. It can be found in 30mg tablets that are instant release, and costs much less than Oxycontin. They can be cut in quarters. There is a nation-wide shortage right now and I can only get the 30s. I cut them in half.Yes, it is habit forming for some people, but not everyone. I have very similar pain, and so far it is the only thing that helps that doesn't make me throw up.
For your tight muscles, try Flexeril. It is a muscle relaxer that doesn't make you sleepy. (I use Xanax for sleep and the occasional anxiety attack).
Did you get a second opinion? MS seems so easy a diagnosis. I looked it up in my Merck Manual and there are a few symptoms that I lack for a complete diagnosis.
And, as you pointed out, the doctors are in a big rush to get you out of there, so it's hard to find the right thing.
(Pardon me, all you doctors reading this. I have just had one bad experience after another and that only adds to the misery).
I wish you well. I will post more as I learn.

Aurelia5


MS is not an easy disease to diagnosis and not every person who has MS will experience the same symptoms...it attacks each one differently...

I take Baclofen for muscle spasms...works wonders, 3 at bedtime; each being 10mg.
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replied May 6th, 2009
Meds fro Pian and Diagnosis
Zigemyster is right, MS is a very difficult disease to diagnose. I have actually only been diagnosed based on so many symptoms for so long, them following a pattern and by the process of elimination. I'm going to Indiana University (a few hour drive from me) on Thursday to see the Neurologists and interns there. It is supposed to be a very in depth evaluation and hopefully by the end of the day I will have some definite answers. But, ms is usually diagnosed with MRI's to see if there are any brain/spine lesions and/or with a lumbar puncture to check the fluid. (I can't remember what the name of what they are looking for is called right now).
And in regards to medications, yes I have been offered Oxycontin, MSContin, Methadone, etc. But I have chosen to not take anything stronger than Ultram (Tramadol)and 800mg Ibuprofen on a regular basis. Yes, I am still in a lot of pain but for now it takes enough of it away that I can take the rest. I found out what the stabbing pain in my face is and its a problem with the nerves in my face. Most likely caused by MS. Its called Trigeminal Neuralgia. Taking these meds, again, lessens the pain but I do occasionally get such bad pain that I have to go to the E.R. and they will give me a shot (sometimes it takes two) of Demerol. I had a bad case of spasticity in my whole left side where I could hardly walk a few weeks ago and as flexeral does not even come close to touching it, I was taking Soma w/ Aspirin and Codeine. I wish I could take it everyday for the spasticity in my legs that I have had constantly for years. But, it is also very addictive and the Aspirin kills my stomach and all I can eat and drink while I am taking it is chicken broth and Sprite. My doctor does still offer me the stronger meds but also supports my decision to not take them until I am ready to. He does like the fact that I am not taking them and does offer me a lot of suggestions as to how to relieve pain with out the stronger meds. I take a lot of hot baths and use the heating pad almost constantly. My husband rubs my legs and arms for me when I need him to (if he can touch me, sometimes I can't stand to be touched becasue of the nerve pain, it even makes my skin hurt.)
Anyway, thanks for all the replies. I will post back again after Thursday if anything changes. I am guessing I won't be started on any MS medications (CRABS as they are referred to...Its an acronym for the 4 medications that are used to treat MS) but I am hopeful that my history and such are enough for them to decide to. I am also going to ask about Baclofen. Oh, and to respond to the person who wrote about the meds....I do take Xanax as well. I have muscle spasms along my ribs and chest (MS Hug) and it helps a little to relax me enough to relax those muscles a little so that it doesn't feel as if the breath is being squeezed out of me. I also take it to sleep as I have had too many adverse reactions to traditional sleep medications:)
Gentle hugs to all...
~Stacy
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replied May 6th, 2009
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Stacy,

I was dx'd with MS 9 years ago and I too had all over body pain...

Approximately 1 year ago I found an anti-inflammatory diet that has helped tremendously. By eating foods that do not cause inflammation truly helps.

As after my MS dx I was given another dx of fibromyaglia (body pain).

Ask your neurologist about the anti-inflammatory diet...it might help reduce your pain. I tried it for 4 weeks (recommended to get inflammation out of your system and after 4 weeks begin to introduce other foods and see how your body reacts)...my pain went from a 10 to a 0 within weeks...

I have this diet posted in the fibro forum...if you can't find it and would like it; let me know.

Wow when I started the offical MS journey...there were only ABC drugs...now CRABS...
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replied October 12th, 2010
Stacylady, there has been no activity on this thread for several months and I am wondering how your full body pain problem is doing. I have identical symptoms and also use Ultram and wish I could find a better treatment. Thanks, SamWV
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replied January 13th, 2012
to stacylady
I am 30 years old and i am having all the symptoms you are having and have had the pain for about four years now this past year the pain has gotten worse. i have been to er and the doctor told me i was to young to have all this pain its affecting my life so badly i sometimes feel like giving up because no one will listen.. how did u get your docotrs to listen to you?
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replied January 13th, 2012
to stacylady
I am 30 years old and i am having all the symptoms you are having and have had the pain for about four years now this past year the pain has gotten worse. i have been to er and the doctor told me i was to young to have all this pain its affecting my life so badly i sometimes feel like giving up because no one will listen.. how did u get your docotrs to listen to you?
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