Fibromyalgia - New To It And Absolutely Lost And Feeling Alone

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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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I can completely understand why you're scared and worried. I'd be totally freaked out and questioning everything, if I were in the same situation.

You can learn more about Fibromyalgia and the treatment options here:

https:/­/­rxchat.com/­wiki/­Fibromyalgia/­

But here's my question, have you seen a neurologist? And exactly what all tests have been run to pinpoint the cause of your problems?

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2

Thanks for listening and for the link, your question raises my greatest concerns.... No I have not been to a neurologist. All the hospital has done is run a huge quantity of blood test about 30 of which only my thyroid showed problems.... So they tell me... then they arranged for a physio who by his own admission isn't really sure what he can do but offers to be a listening ear for me... and of course I have home help and a wheel chair... Which are all nice and good but..... I would like at some point to return to a normal life... I realize fibromyalgia doesn't seem to have a cure but surely there must be ways to live normally, and preferably naturally?

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3

To be honest, from your symptoms, I was more suspicious of Multiple Sclerosis, which is why I asked about a neurologist.

It has been known to come on suddenly and cause symptoms just like you've described, but the treatments of course, are quite different.


https:/­/­rxchat.com/­wiki/­Multiple_sclerosis/­

Either way, I believe that getting in to see a neurologist will really probably be your best chance of getting any definitive answers and proper treatments.

Do you have a GP that can refer you?

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4

I'm currently waiting on a list to see the pain clinic at the hospital . Whether they do any good I am not sure.. but yes you clearly see my problem... Doctors that are incompetent at their jobs. Combined with me in so much discomfort that it is hard to demand my rights. In New Zealand the Hospitals are not a place you want to go when you are sick... many of us choose alternative therapy options rather than risk the declining of our conditions that can occur under the hospital care. There has been many life threatening errors made by our local Hospital. Thanks for the info I'll read up about MS and take that to the doctor... Sometimes I wonder what we pay them for when we have to do all the research into the illness ourselves.

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5

I have Fibrmyalgia also and have never heard of anyone getting as bad as you in such a short time. Sounds like to me you have something else. A rheumatologist diagnosed me. I ache all time like someone coming down with the flu. There are sore spots which move from one area of my body to another at random though mostly in my shoulders, legs and butt. I stay so tired I can hardly get through the day at times. Also have "fibro fog" when it is hard to concentrate. There are two fibro medications that might help if you do have this. One is Lyrica and the other is Savella. I take the Savella along with a muscle relaxer and pain medication. If this is what you do have and can find a good, compassionate doctor, chances are good you can lead a fairly normal life. You must fight this every day and be determined to win. Good luck and may God bless.

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6

they have had me on all 3 fibro drugs and my body wont tolerate any of them im in pain all the time i find myself falling a lot more now and my eyes are not good after the lyerca now my dr put me on amitriptyline hcl and it make me so tired and i cant think all you want to do is sleep then when you do get up it hurts more than before what can i take that wont add so much to the fibro fog

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7

Have they tested you for other things? Like MA? Done an MRI of the brain, looked for lesions? Etc? Ruled out other neuro issues?

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Absolutely nothing... it's very upsetting, they have provided home help for 13 hours a week, given me a wheel chair to get around in public with, and made an appointment for a pain clinic but I've been waiting 6 months and still no sign of when? I have physio but he won't do much with me because he doesn't know what he's dealing with.... I mean I don't care what I have I just want to get back to a normal life.

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9

Awww I'm sorry to hear that.... sounds like you are like me and don't react well to drugs... some of the natural stuff I've found that mildly helps is Maganisum Citrate pills and bathing in Epsom salts... Some days my skin is burning so much I feel like I'm on fire... the salts help then.

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10

Thank you brenda ... this is what concerns me too... my symptoms while similar do seem odd... a new thing I have noticed is if I can keep my adrenalin from pumping (ie: when I'm upset about stuff) then I can almost go pain free for a few days without drugs... but if someone brings stress in my life... I can seriously crash and be crying in 10 mins... I wonder sometimes if it is more an adrenal thing than anything else

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11

Hi Brenda.. I have just been diagnosed with fibromyalgia. I am so tired most days, pain is bad in my back, shoulders, legs. I have fibro fog. I am not on any of the strong meds yet. Am trying to control it with Naprosyn and tylenol for arthritis. My Dr. Said that swimming or acqua lessons seem to help with the pain. Its worth a try. You have to fight this every day.

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12

Hi, what sort of pain do you get in your feet, and do you get numb patches after that then slowly return? - check out wartenbergs migratory sensory neuropathy which I also have alongside fibromyalgia.

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13

this is how mine started but it wasnt fibro to start with .one day got up with pain in legs couldnt walk far .dr didnt no what she doing almost killed me sufered a year could no longer walk ater about 6 months draged mayself every where.i chamged drthe irst visit she new what was wrong ..after test done i had 95% blockage in my aorta .sounds like thats what you have...ater sergury it helped where i can walk now but all the pain didnt go away so much damage so after that it moved all over my body i have fribo every where ,,i hurt every day and it is all i can do to do a little light house work ..i havent worked for 2 years i am so tired and depressed and i have anzity really bad..the mes they gave me just dont work or my body just cant take them,,but started haveing paines in my head after 5 years now so they did a mri looks like there is black spot on my skell and now there sending me to a cancer center to see what it is ?????i feel sick every day now ..beleave me you need some test..you can have a test done with out your dr to see if it is your arota go to life time screening they can test you for that look them up on line and see when they come to your area,

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14

My feet get numb and alot of mornings when I wake, my hands/arms are numb and I slowly get the feeling back. My Dr. Said That the tylenol arthritis works for the pain. I don't want to take Naprosyn when driving to work or during work hours. Yesterday was my best day in a long time. I woke up with no headache, no pain, and felt refreshed and full of energy. I cleaned my house and baked. I haven't felt this good in months. On Friday, I was so tired, I could have fallen asleep in a second. I was so glad when my shift was over and I could go
home.

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15

Hi Kris mostly the pain in my feet is achy like I've been standing on them for hours when in fact it's only been minutes... I have better days if I keep myself moving I slowly reduce the pain..

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16

HI Mary

OH I'm so sorry to hear what happened to you.... hugs I guess that is what I fear the most... Doctors just don't seem to take it seriously.... and although one won't die from Fibromyalgia surely it isn't too much to ask for a few tests to ensure it isn't something worse...

I had 2 pain free days in the last 9 months .... like you I can only do light house work and then I must take a break ever 10 - 15 mins... but I am determined to get better or at least create some semblance of a life.

I'll look up what you suggested I hope things go well for you also.

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17

looks like next time i will not be typeing in the dark and will re-read before posting ..eyes also going the last 2 years lol

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18

Just a note to all you fibro suffering friends. I cannot take any of the arthritis medication because I am also on medication for acid reflux and they cannot be taken together. If off the shelf meds help, by all means stay on them as long as you can. Some days even my rx medication does not help. Yesterday and today have been two of those days when nothing helps. I know I have to keep fighting but these two days have been hard.

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19

Stress is a major factor. However, who can completely avoid stress? Do the best we can and that is all we can do.

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20

Hey Brenda I am on acid reflux medication too... thanks for sharing that... kinda important to know..

I'm doing meditation a lot and thinking about Yoga once I get out of my wheel chair... I actually walked along the beach for the first time in 9 months with the help of someone else.... sure .... but it felt good.

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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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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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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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26

Hey, that is some improvement. Hang in there.

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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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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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23

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

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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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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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