Fibromyalgia - New To It And Absolutely Lost And Feeling Alone (Page 2)

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I have just been told it's likely I have fibromyalgia ... I'm pretty terrified as in 6 months I have gone from being a fit and active woman to being in a wheelchair. I can no longer stand on my legs due to a combination of pain and exhaustion and general legs refuse to support me and I'm often puffed and my heat beats like I've done a mile run just from 5 mins exersion... my concern is going on drugs... I'm afraid that things will get worse if I start taking drugs.. I have little or no faith in the medical proffession as they keep saying oh we think it's fibromyalgia but we really arn't sure and... they are shocked at how quickly I am detoriating but offer me a reason why other than they are saying muslces detoriate from lack of use... but in a few months? I do push myself to keep moving... can anyone offer some solutions as to what options are available with minimum side affects.. i tend to react very strongly with drugs and fall pray to side affects if there are any. Feeling a bit lost and scared and I need some information before I trust what they are saying.

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21

sorry it is life line screening they do testing for blockages and many other test with out a dr .they come to your town or close to you so you can be tested ..thats what i did in between leaveing the doctor who tryed to kill me .she told me in was all in my head ..with a 95% blockage in arota..sound like this test may be what you need..sorry but setting around in a wheel chair with a dr who dont no what he is talking about is going to get you no where, if hes the only dr around you then you need to got out of that town .you dont get fibro and end up in a wheel chair in 6 months ..really ask anyone .thats not what you have i really dont beleave that your dr has the right to even say that..just becouse he dont no what wrong with you..no fibro will not kill you... but what you have just might . i really i dont mine to be rude .but it sounds like you beleave him?

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22

doh - I just realized that my reply asked if you had been tested for "MA" when I had thought I typed "MS" !

Of course I might have typed MS and my spell check might have changed it, it changes some of the things I type to the weirdest things. It is more likely that I simply was in a hurry and neglected to double check. Sorry about that.

Have they checked you for MS though? It just does not sound like Fibro to me.

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23

Are you taking a drug for lowering cholesterol? Fibromyalgia is one of the side effects. See:
statinsideeffects.weebly.com

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24

Hi Pain Guy That's cool I knew what you meant :D

You are not the first person to say that about MS which worries me considerably as they are two very different illnesses and should be treated differently... Untreated MS could be a problem for me. No unfortunately they have not checked for that.

Well finally I have an appointment on the 17th with the Pain Clinic 9 months after first falling ill. So I hope to have a lot of these questions answered... and I will try to push for a MRI... wish me luck... although I think 90% of my problem is Doctors in NZ need to wake up and come into the 20th century ...

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25

you go girl i am glad you have an apointment.but i also go to pain managment there not going to do any thing but try to put you on a lot of pills and give you a few shots..i was told first day they dont fix anything !!! there not there to till you what you have or u dont have..a mri will most likely get you no where .there only going to do a mri on one part of the body..like head or lower lumbar ..i have so much pain in my spine from my neck all the way down and all they would do was a lower lumbar ....when i got the head pains then they desider to the mri o the brain .so good luck with that...that only think about ms is they have to rule out everything else first.it take years ..i have been thinking from the start that is what i have but no one has one time even said the work ms to me..and i have and do see a lot o doctors..

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26

Hey, that is some improvement. Hang in there.

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27

Yes I totally understand what you are saying Mary it's like there is this big industry to keep us on pills not to give us quality of life .... I've agreed to attend this appointment but if I don't get any satisfaction I'm optioning out of the medical system and going to natural healers... i don't think they can make anything worse... Hope you find some solutions soon hugs

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28

Helen, when I was first diagnosed in 2005 I wasnt able to find people or forums like there are now. It was a very rough and long road and alot of trial and error on meds. I prefer hydrocodone and oxymorphone (derivative of morphine) over oxicet/roxicet and oxycontin/roxicontin. These drugs are more of a derivative to heroin in comparison to the hydrocodone and oxymorphone. My dr prescribed roxicet 1x and I slept 18 hrs straight and felt yucky. The longer u are on the oxi/roxi's the more likely u are to go thru withdrawals (chills, diarrhea, vomiting) when u stop taking it. Has your dr check u for lupus? There are 4 different types of lupus and like 23 sub types of lupus. Fibro and lupus are dual diagnosed a lot of the time. For some reason they like to work hand in hand. Ive started having some other problems and am going to talk to my dr about evaluating me. Also, check into daignostics for ms. I have had years of feeling like I was dying and prayed I wouldnt wake up the next day. But I have had more years of not being upset for having it because of info I have been able to share with physicians and other patients. For years I kept daily logs..1st one showing/talking about symptoms etc that were going on with me. 2nd one was day to day living notes for me. There is something called "Fibro fog", I call it "Mud brain" I had and still occasionally have "Crs" (cant remember s***); my notebooks helped me keep my sanity. I also had a section for meds and treatments. This way when I had to see another dr for whatever reason I didnt have to waste time and money on meds that werent effective. Also mri's, ct's etc were/are in there because still to this day I get asked when the last time was I had a whatever was. All I can really say is that as time goes on it will seem a little easier, you are gonna experience drs who think fibro is bs..Just ignore them and keep moving. There are a lot of drs out there that dont believe in fibro...Screw them!! U kno how you feel and you and your dr are working on a treatment plan. All you need to worry about is that you trust your dr and he believes you. Good luck.

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29

Does not sound like Fibro. Make sure u see neurologist. Can be MS! You need brain MRI, CAT scan, etc. Being that severe that fast, you need a team if docs. At the least a neurologist and a rheumatologist! Or, I’ve just discovered something that fits my condition better. I vaguely remember seeing in some docs notes, but it was never followed up on! It’s called polymyalgia rheumatica and I think I have the GCA dud the crushing relentless migraines. Making appointments now with both kinds of docs. But treatment will be difficult for me due gastric bypass surgery and malabsorption. No NSAIDS or steroids can be tolerated! Leaves me with methotrexate which very dangerous! If you had vaccines lately or even if not consider Guillane-Barre or Epstein Barr

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