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questions about fibro
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TheLordIsPowerfull posted:
Just if there is anyone out there that want to talk about fibro since I am still not really understanding to much about fibro since I hade it for almost five years. I hear some people say they are really in bad pain but then I hear no Fibro doesn't get worse it stays the way it is eaither you feel it bit better or the most you get is your worst pain. But I have been reading a little more stories and people saying there mom passed away but not sure if it was from fibro or there dad is in really bad pain if that is from the fibro just lost I just want to know is there a such thing that fibro can kill you, or make you suffer so much that you just can never get out of bed, or maybe they have other issues with it. How do you know you wont end up with Ms how do you know if you have ms and it's not just fibro
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Caprice_WebMD_Staff responded:
Hi Maria,

No, Fibromyalgia doesn't kill you and no, it doesn't mean you'll end up in a wheelchair. Most do not.

I've had Fibromyalgia for over two decades and, while I've had to make some adjustments to deal with the pain and fatigue, I still live a full life with plenty of love, adventure and laughter.

Staying in bed isn't a good idea either so keep moving. You don't have to do a a lot of extreme exercising, but do have periods of activity mixed in with the periods of rest.

MS is a different condition than Fibromyalgia. While it's possible someone can have both just because you have FM doesn't mean you'll get MS or any other condition.

There really are no guarantees in life, no matter what. Focus on doing the best you can each day and appreciating each day. And find laughter wherever you can find it.

You've come to a great support group here and I hope you'll stay. (((softhugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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TheLordIsPowerfull replied to Caprice_WebMD_Staff's response:
wow the way you spoke to me and the way you said it THANK YOU :) I hear stories from friends etc, and what they say it like what am i going to do with my kids, Yes your right I don't let it drag me down i still have to go to Chuck E. Cheese with my son cause he loves that place and still do my same oh stuff, I have to for my 15 year old that works two jobs and goes to school full time, the only thing that is stoping me from doing things sometimes is my depression and bad anxiety but besides that I thank god everyday for a presious day. Thank you, you touched my heart.
 
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Caprice_WebMD_Staff replied to TheLordIsPowerfull's response:
You're very welcome, dear one. I'm glad I could help and I'm glad you're here.

You still should pace yourself and that's okay. I was still a good mom (I think) despite having FM and ending up a single mom for half of their years at home. I don't think they suffered because of my limitations and now they're 25 and 28, I'm a grandmother twice over, and our relationship stays strong. I hope you keep working on the depression and anxiety. (((softhugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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ruru5 replied to Caprice_WebMD_Staff's response:
I wanted to respond to 'The Lord is Powerful', in this way! God is good and I have to keep telling myself this everyday. I have seen His power and goodness and I no longer question why I have Fibro. I do believe that EVERYONE that has this hateful disease has different pain feelings and pain intensity. Trying to find a niche that any one person falls into is like trying to find a needle in a haystack.
Because Fibro is an auto-immune disease it falls into that unknown category of what, why and who gets it and for what reason. I was 'formally' diagnosed with Fibro in 2010. But have had it for the last 3 years. My rheumatologist diagnosed it along with a couple of other auto-immune problems and finally went into my health record in 2010.
Right now I am so angry, I have had to leave my job, and am now on disability. I am one of those that worry and wonder if I will be able to stand or walk in a couple of years.
You are not alone and I will pray for you and others who have this disease. There is no who knows your pain, but I can say that I am so sorry that you have to experience this. Try to stay positive, that helps. Try to stay active, go out and see people, talk with others that are happy and upbeat. Stay away from folks who are pessimistic, as they will only drag you down. TELL your family when you are having a fibro day and give yourself permission to rest or lie down or WHATEVER you want to do. You have earned it....
God Bless You and your family
RuRu5
 
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youngwfibro replied to Caprice_WebMD_Staff's response:
Fibro doesnt kill you, correct . . . but you can die from underlined illnesses that you get, or cant fight off well due to having Fibro. I disagree strongly with medical professionals who state that Fibro pain does not get worse, and that fibro is not a progressive illness. I personally don't think there has been enough case study on the subject to totally discredit patients complaints of progressive pain. I personally have had Fibro since aproximately the age of 14yrs old and was not diagnosed until i was 21 yrs old. Over that long period of time my pain most certainly got progressively worse and i did infact become quite limited and handicaped. Its not until diagnosis was made that i have begun to feel a bit better. I still suffer from limitations and can not keep up with my fellow 23 yr old peers. Some of my limitations are not directly fibro related but stem off having fibro.
 
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Amandahopefull responded:
I have been diagnosed with fibro since 2004, and when you are first diagnosed you think your world is coming to a hault. I have gone to several doctors over the years and they have all told me that this isn't a so called silent killer and its not something that will slowly take your life. Now with that being said it can cause you not to want to do anything but stay in the house and eat....which could lead into other problems. I am not for sure if you have told your family about fibro but I suggest you do. I was scared to tell my family because I thought they would think I was a sissy, but once they found out they have really helped me stay afloat.
 
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Amandahopefull replied to youngwfibro's response:
@ youngwfibro I agree with you that fibro does get worse, I was diagnosed in 2004 and yes I had pain but it wasn't until 2007 that I felt like I had hit a brick wall. Some of my doctors say that emotional issues can cause your fibro to get worse. Which seems right because in that one year I lost my job, started another and on my first day on the job I received a phone call that my grandpa had died, then lost my nephew in a drowning, and then ended the year in a divorce. I am having trouble minimizing the pain and keeping my depression under control.
 
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tauruswriter replied to ruru5's response:
I have fibromyalgia have had it for a long time and there are days which I am very stiff and achey especially on cold days or damp days. I feel the gym has helped me a lot I go 2 days a week and I also do Ti Chi
at home from a tape . My biggest problem are my legs and feet and my upper right arm although there are days I ache from the top of my head to my feet. I Message my legs every morning down on the out side up in the inside and when I have a lot of pain I use something named Neurogan its comes in gel or liquid form its a rub it helps me with pain I get it at wallgreens or CVS its a bit pricey but you can get it thru google for less . I also take Tramadol HCL 50MG half a pill at night before I go to bed because a hold pill made me dizzy that also lets me sleep and I recently started taking fish oil 1,000MG once a day with a meal not on a empty stomach all of these has help me also with prayer and meditaion. I hope some of this helps you. tauruswriter
 
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Pixe5 replied to youngwfibro's response:
I've never heard of immune problems being a part of fibro. Can you site your sources?
 
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Dollbug replied to Pixe5's response:
Hello Pixe....you can google it and find lots of info on it...

I think that there are a lot of knowns and unknowns about the wrath of the dragon and other illnesses as well...

It would be good if everything was known about them....then perhaps there would be a cure for all...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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jaczaczipp replied to youngwfibro's response:
I have never responded to any of these but felt it was very important.I dont understand when they say fibro is not progressive because there is times when the pain and swelling is so much more painful and times it is not.I do have to say that i dont remember the last time i was pain free and its been about 4-5 years now and they have just made it an official diagnose of fibro and still are unsure on if its also RA or anything eles because the pain moves from different places but always joint pain and nerve pain. I have extreme headachesbut have 3 bulging disks c-5,6,7.I am allergic to steroids so she gives me short and long acting milocaine and some other caine in 4 shots in the back of the head to help get rid of the headache so i am not always in bed with ice on my head.I have been on work disability for 3and a half years now and dont no what is gonna happen next. My reason for writing this now was not to not give you hope but to say it has changed many times to the worse.Some days i need a walker just to walk and i am only 45 years old.Not to mention when i see a pain specialist or a new doctor or someone for the first time they roll their eyes at me and talk to me like i am stupid or just looking for pain meds. Then when i leave their office i walk away crying and making an appointment with my councelor cause other wise the depression gets so bad. I take 150 mg cybolta, 3200 mg gabapentin(nerve pain) 10-6.25 ziac(lblood pressure) 4-5 pills of oxycodone (pain) down from morphine my decision.also soma 3x a day but i only take it when needed useally when i go to bed cause i twhich so much it wakes me in the middle of the night and doesnt let me sleep and during the day its all day along with memory loss and cant drive on all these meds so i sit home getting more and more depressed. It has helped to realized that i am not alone so thank you everyone.If anyone feels that you can help or i can help u please email me at jackiezachman@hotmail.com and in subect please put fibro decussion so i dont just erase it. good luck to you all!
 
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annette030 replied to youngwfibro's response:
The word "progressive" means entirely different thing to different people. In my experience in the medical world (I have been a nurse for 40 years) "progressive" used by medical people means that there is structural damage over time, like with arthritis you can see the changes in the joints. With FMS, there is no structural damage or changes over time, so if I were to use the word "progressive" with FMS, I don't think I would be accurate.

If I used the word like most lay people do, I would say everyone is different, but for me it did seem to get worse over a certain length of time, then it evened out. So, maybe it was progressive for awhile. I am not the person I was in 1995, but I have a good life anyway. Of course, I have more pain than I did before FMS, but I do not have any structural problems.

To me, with the reading I have done as of today, I would say that FMS is a neurological problem. With more time and research they may prove it is not at all a neurological problem, but for now, that is where I lean. I have a great immune system, I do not get infectious diseases at all. I have taken antibiotics for infections maybe twice in the last 20 years. So, of course, I don't think it is an immune problem. We all look at things from our own perspective.

I don't believe you die from "underlying illnesses that you get, or can't fight off well due to having Fibro."

I hope you feel better soon.

Take care, Annette
 
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mytime12 replied to ruru5's response:
If you don't mind saying, what kind of disability did you go on? Yesterday was my last day at my job - I had to quit because of the fibro. I will have COBRA health insurance for 18 months but that is very expensive and I don't know what I will do after that. Any help in the disability process would be much appreciated.
 
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annette030 replied to mytime12's response:
Check with your state to see if they have any state short term disability insurance, they do in Calif.

Check with your county or state to see if you are eligible for Medicaid.

Check with your human resources dept. at your last job to see what your benefits there include.

Many of us are on SSDI, I am. But it took a really long time to get it. My husband's employer had a health insurance program that we got on when I stopped working. I had always carried our health insurance through my job. Medicare comes after two years on SSDI, you have to pay for Part B & D, but it is cheaper than COBRA or many other types of insurance.

Take care, Annette


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