Please help: I'm new to this

Welcome, ctbs929 :) Glad you found us!

First: People can react to different medications in different ways. I have been on over a dozen different ones in the last year; I am on Savella now.

Second: To my knowledge, FM doesnt just get worse; it is not like MS, and gets worse over time; it is not degenerative. We do, however, have flareups that cause some days--or weeks--to be worse than usual.

There is a thread in the Fibromyalgia forum called Fibro 101. That would be a good place to start :) It helped me when I joined here.

Thanks Debbie, Its so helpful even just to hear that this is real and not in my head. I will have to do some research to try to find a doctor who can help.
I noticed you also have issues with your spinal cord. Just recently I woke up pretty much paralyzed from the pain. I literally could not move, not even to lift my head, my friend had to come over, feed me dress me and took me to the clinic. The doctor gave me muscle relaxers which didn't really help, I just had to wait for it to resolve. I just feel as though it hasn't really resolved. The pain is still searing, just not paralyzing. I have been researching for years plus I am about to graduate from nursing school, but sometimes its just easier to talk to someone who also suffers from it. Are your back problems related in any way to the fibro? I would get an MRI but I don't have any insurance yet. I know everyone is different, but what do you think has helped you the most with your back pain? I have been on NSAIDS for so many years that I don't think I respond to them anymore, and I fear I may be close to developing an ulcer. I would love to be able to take natural remedies, I checked on Fibro 101 which had some great information on stretching exercises. But is this spinal cord irritation unrelated? I'm so confused

Hi, CTBS, and welcome!  I'm so glad you found us and joined the family.  UGH!!  The old "It's all in your head" mantra.  I could just scream.  Fibromyalgia affects mostly women.  We do have a few men here but for some reason women are afflicted with this illness far more than men.  I often wonder if doctors tell a man it's all in their head and send them to a psychiatrist.  If a doctor told me that, I'dl tell him they were the one that needed psychiatric treatment....along with further medical studies! 

 

You see, this is not all in your head.  Just because you can't see pain doesn't mean you don't have it.  Pain doesn't show up in blood work either.  Because some doctors can't figure it out they automatically think you are a little whacko.  Nope!  Fibromyalgia is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few.  Unfortunately there still are doctors out there in the Dark Ages and you seem to have one of these.  I definitely would be looking for another doctor...one who treats fibromyalgia patients.  Ask before you ever make an appointment.

 

I refuse to take Cymbalta.  There are other meds I won't take either.  I've heard too many bad stories about them.  I'm stubborn and try to find more alternative ways of dealing with this illness.  I did use ibuprofen (2,400 mg per day) for nearly 25 years for fibro but developed the dreaded bleeding ulcer last summer.  I can't take NSAID's now and have now developed what they think is arthritis in the base of  my spine and my inner joints in my legs.  I get the sharp groin pain along with butt pain.  I'm in the process of dealing with this and hunting for relief.  I really need an anti-inflammatory but can't take them now. 

 

But, there is a natural product that does help me some.  It's called Curamin.  I forgot to take it one day and, boy, did I ever know it.  So this is helping me some.  I also take malic acid/magnesium supplements and vitamin D3 supplements to help with pain and fatigue.

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good information about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.  There are links about malic acid/magnesium supplements and vitamin D3 supplements there, too.

 

I do hope you find a doctor that will help you.  This is definitely not all in your head.  I don't think we could imagine all the things we get with fibro!  

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine 

As for what comb worked best for me was amitriptyline 50 mg ,Flexeril 40 mg, it was like magic. But the show was over in 3 days.
I had a bad panic attack and ended up in the emergency room. But I was pain free for 3 days. I wish I could go back on it, but I can't.

As for does it get worse. I can only say from my point of view. I first got it after a motorcycle wreck. The pain never went away, it spread and drove me crazy. I went to a "The Arthritis & Rheumatology Clinic" and several thousand dollar latter I ended up with a script for Vioxx. ( Which was taken off the market latter ) But at least it did work some. Well last year I was in another car wreck May 6th 2011. I was rear ended by a driver that was reading his papers. I was stopped at a bus stop on the hwy, waiting for the child to cross the road. The driver in the truck never slowed down any and rear ended me at 60 mph. I was watching the child cross the road. I never looked into the rear view mirror. The seat I was in broke in half, the car was 2 ft shorter, the spare tire in the trunk when up and out of the trunk. I hit my face on the steering wheel, cracked 3 ribs, passed out and someone pulled me out of the window because the car was leaking fuel. I woke up in the hospital with a whole lot of pain. I got to see all kinds of doctors since then. But the life I had before the 2 wreck was much better then what I have now. But once you reach a certain point the pain, is just like a roller coaster. Filled with ups and downs. I work to ignore the downs ( actually just sounds good ) and enjoy the ups. But I can't know exactly how any one else might feel. We are all different, and our bodies respond differently to everything. I know some of us might deal with more pain then others, but I never belittle how someone else feels. Their is no way I can understand someones pain. Pain is personal. Just like passing a kidney stone. We allexperience it differently. But I do wish you all the best. Westpur

Ps. And yes it tends to be a nightmare, from time to time. But your not having it alone. Sometimes I wish someone would change the channel. I getting tired of Steven King.

Your most welcome. Sense of humor is all I have some days.
Good thing your still alive too. We both got lucky, and unlucky. Some people told me God put me their to save a child's life.
As for who paid all the bills, I was hit by an uninsured motorist. His truck was totaled out when he hit me. His truck was a 1997 chevy 3500 truck. I had made the mistake of trying to save on gas money. I was sitting in a 1987 Honda crx si. My insurance company paid some, then dropped my insurance. I knew I should have been driving my 1980 Benz 300td. Nothing can hurt that big tank Well hind site is 20/20.

On the positive side, they moved the bus stop off the hwy where it was from last year. An no child was hurt crossing, at the time of the wreck. I have all the pictures of the car, as well as all the damage done to me, still gruesome to look at. As for the bill owed, well I do the best I can. Surprised me how fast they come to collect on the bills. His truck was sold for scrap at $500. which I got, well actually the hospital took it. An I will in time have all the $18,000+ left paid off.

Foot note; a subcompact cars, can and will get smaller when hit. Lesson learned. I owned the car for less then 30 days. I bought it April 17th. destroyed May 6th 2011. Paid way way way too much for it. So when it comes to the price of gas, not something I'm gonna fret over again.

Ak Angel: Thanks for your reply. I hope you don't mind i have some questions for you. Are you disabled due to the Fibro or is it something else? It just makes me nervous to hear that because I am so close to becoming a nurse which has been a dream of mine for years now and it would crush me to not be able to work as one.

By next year I am supposed to go on a mission trip to the Dominican Republic with a group of doctors and other volunteers. I strive to find a solution that can allow me to follow my dreams. But more and more I fear that the pain is only getting worse and more difficult to deal with. I also go to a therapist who asks a lot of questions about my past which kills me to talk about. However, I think it may help me put some issues to rest... except are they really put to rest or just now in my conscious and not blocked out? I don't know anymore. I am having what I think is a horrible fibro flair and I can hardly think straight. I actually broke up with my boyfriend today cause I feel as though I am only going to hold him back. He will never understand, as much as he tries, and he deserves to have an active and happy life... I come home and just want to lay in bed. When he met me I was training for a half-marathon, running almost every day. Gave that up, only got up to 8 miles before i had to stop, i ended up in crutches for while after that.

Anyways,what kind of natural remedies work for you? I wouldn't want to try any of the drugs recommended for fibro because of the horrible reaction I had to Cymbalta. Lemme know, thanks!

-Cindy

Thanks Angel, I'm sorry to hear about your fall.. that sounds painful, spinal cord injuries are no joke. So you developed fibro as an adult? Specifically what was your first sign that you had fibro.. in other words, do you remember your first symptom now that you look back???

To be honest with you, I would also have to be on my death bed to give up my career as a nurse... thanks for sharing. I am thinking of getting my masters to be a nurse anesthetist. But right now I'm doing my preceptorship in the ER and I can't wait. I start after March 14 with 12 12-hour night shifts!! That is definitely going to be a challenge for me, but I excel in high pressure situations. Plus adrenaline calms the pain. Wish me luck!

Debbie: the adrenaline thing is something I noticed when I got in a car accident when i was 21. I had no idea I had multiple deep lacerations until the adrenaline wore off and I saw blood gushing from both my arms... But it is also a scientific fact. As long as you are having the "fight or flight" response, pain is masked... that's our own body's self defense mechanism for survival.

Pain has been at an all time high lately, and i'm running a low grade fever with GI upset for about a week now... this stinks, i'm going back to bed. At least i'm on spring break :(