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Fibromyalgia
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Posted 5/19/2011 8:27 PM (GMT 0)
Hello

Well, I am so scared of taking
Medicines and gettig dependent and my fear gets more confirmed when I read stories.

The thing is wenget put on anti- seizures, anti-depressants, anti- psychotic plus pain killers.

I don't think the pain killers and inflammation meds are bad in the nervous system but I hear horror stories of the others.
So my primary symptoms are sensory of all painful kinds and then spasms and cramps.the meds they give for this is like lyrics and others.

I read on anxiety boards and even seiUre and depression boards that they had depression and started some anti seizure med and started having twitches, electrical zaps and all. Or if they wean off then these symptoms started.
Some as bad as sone one with parkinsons.

I know I didn't take anything for years and then I took lyrica. They very next day buzzing and internal tremors and as time has passed this is worse. I only took it for 6 months.

Now yesterday doc gave me tramadol and eleavil. I took tramadol (nausea)
And scared to take elavil.

How do you come to terms with the fact that these mess can actually do more harm and intensify nerve activity more.

I see a lot of people whose docs say benign fasiculation syndrome and if you get their history they started taking Xanax or others and this started.

Its like these mess are creating new patients for these docs and new mess to e taken and the circle continues.

Deb25 if you are reading this how was your gluten sensitivity found?

Thanks mostly rambling trying to come to terms to take mess or suffer now or suffer later from med side effects

Thanks
Posted 5/19/2011 8:49 PM (GMT 0)
I have found out the less meds the better I do. I get so many side effects, that the dr's are afraid to order new things. It seems the natural remedies is the way to go.
Posted 5/19/2011 9:31 PM (GMT 0)
Ak angel

What kinds of natural remedy are you on if you don't mind sharing?
I started alpha lipoic acid to help with nerves
Posted 5/20/2011 2:54 AM (GMT 0)
Hi, if it were me I would take the elavail and tramadol and forget the lyrica (unless the lyrica is working). Sometimes my theory is that "less is more"...............I am not a doc but that is just my opinion. Good luck
Posted 5/20/2011 11:40 AM (GMT 0)
I too believe that less is more.  I got desperate and tried a drug combo that has helped many people with fibro but it was a nightmare for me.  Getting off them has been as  equally horrible.  (one of them was valium...one of those anti-seizure drugs you mentioned that is also used for RLS and muscle spasms).

Many of these drugs have helped others manage their pain so they can lead a half way normal life but personally, I was better off on Advil and hot bathes.  JMHO.

Donna

Posted 5/20/2011 11:52 AM (GMT 0)
Morning Tulips.  My sister and I had both been sick for years with diarrhea, itching, fatigue, hoarseness (which changed both of our voices, much deeper now and both will go hoarse very easily), muscle aches, etc.  She had been seeing the doctor trying to figure it out.  Her husband was researching online and found celiac disease, so she asked to be tested for it.  The gastro laughed at her, said it is extremely rare and she couldn't possibly have it.  He was WRONG and apologized to her.  That was 11 yrs ago this last March.  She went gluten free and started to get better.  I had no insurance, no job, newly divorced, and no money for testing, so she convinced me to go gluten free too.  It will be 11 yrs for me in July.  Once you go gluten free, it's very difficult to be tested for celiac.  That didn't matter to me though, since being gluten free worked for me too.  3 yrs ago, my neurologist did a celiac panel on me with gene testing.  The panel of course, came back negative, which it should with me being gluten free.  The genes came back double DQ1, which many doctors say is not celiac, some will even tell you there is no need to be gluten free unless you have DQ2 or 8 genes and flattened villi.  Those doctors are WRONG, very WRONG.  Our dad was diagnosed celiac 7 yrs ago this next Nov.  Neither he nor my sister have been gene tested.  My dad has to have one DQ1 gene for me to have 2.  Am I celiac too?  I truly believe I am.

If you have been tested and it came back negative, then go gluten free and see how you feel.  If you haven't been tested, then at least have the doctor do the blood work for celiac.

There is no doubt in my mind that the gluten in my life for 45 yrs is the reason I have so many other problems.  Gluten intolerance causes vitamin and mineral deficiencies and with those types of deficiencies, our bodies fall apart.

Because of my many intolerances and leaky gut syndrome, I can't seem to take the meds.  Everything I tried has caused a flare with my leaky gut, which I have been trying so hard to heal.  I think if I take ibuprofen or Aleve as I used to, I will be ok, but I can not take the megadoses the rheumy wants me to take.  Meloxicam made me so sick, then I tried 500mg of Aleve twice daily, which made me just as sick.  I don't know if the Flexeril caused issues or not, but I was sick for over 6 weeks from the meds and for now, I am afraid to try anything.

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