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Diagnosed with Fibro and fearing the future

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Fibromyalgia
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Posted 6/20/2012 8:58 PM (GMT 0)
about a year ago, I started having the following symptoms: numbness, fatigue, muscle weakness, joint issues, and other issues. Of course, these symptoms didn't all start at once, they progressed over several months. After being tested for MS, lupus, and several other illnesses, I've been diagnosed with Fibromyalgia. Although I'm greatful to not have any of the alternatives, having Fibro scares me. I am taking only Lyrica right now, and it has truely helped my symptoms. My fear is the future. My fear is the progression of this illness. At this point, I don't have the extreme and constant pain that I've read about in many of the blogs. I really don't know what my question is, I just kind of want to know there are others out there like me.
Posted 6/20/2012 9:20 PM (GMT 0)
Hi and welcome!!! It does help to know what you DON'T have, doesn't it? For me, the fibro is controlled, and I haven't seen a progression of it. Some known triggers that I can't do a darn thing about, like weather changes, well, you learn to ride them out. You will learn to pace yourself, not to over do. Other triggers, lights, smells, noise, I try to avoid what gets me.

Most of us have a good life, with a few bad days. But once you figure out what meds help YOU, you can get started to reclaim as much of your life as you can. Most here try some moderate excercise daily. Start small, and work up as far as you want. No marathons here!

Have you read Fibro 101? Good stuff there.


Others will be along soon, you are not alone in this.
Posted 6/20/2012 9:25 PM (GMT 0)
Hi Beclee,

And welcome to the fibromyalgia forum. Don't be afraid. Stay on top of the symptoms. I have kept mine under control with the help of medications for a long time. Try to just take one day at a time. Don't worry what the future holds. You will be okay... It is hard having fibromyalgia. But it isn't the worst thing in the world as you already know. Stay active. Walk as much as you can. I think it really helps. The worst thing is to dwell on it. Take it one day at a time, and stay in tthe moment.

I hope you are having a pain free day...

Do check out fibro 101.. It is a wonderful place for information...

Hugs, Karen
Posted 6/20/2012 11:29 PM (GMT 0)
This is new to me too.  just realized one day, every time i tried to do anything the next day i felt awful.  didnt know why or what it was or really how long i have been this way. went to a doc for severe arthritis in my neck and after a couple minutes of poking around and  few questions he told me i had fm and after reading up on it and comparing what i read with my symptoms it makes sense.  the main thing i am finding is to remain positive and not over do but at the same time MOVE. I've changed the way I eat started doing streches even when in pain and take daily walks just shorten them on bad days.  WE CAN GET THROUGH THIS!!!!!
Posted 6/20/2012 11:40 PM (GMT 0)
I am 73 yrs of age. I have had fm all of my adult life. I have had bad times and good. The main thing I have found is to not dwell on the aches. Learn how to limit your activities..repetitive motions etc. Mine has went into remission at times. Some stressful event in my life like my mom dying of cancer has brought it back with vengence. Get some physical activity. Water walking is wonderful! Another illness will make it flare . Be prepared and expect flares. On those days I find a quiet thing I like to do. I don't force myself to do anythibg  physical on those days. I know tomorrow will be better. It doesn't have to ruin your life. It hasn't mine. Its wonderful now that they are realizing fm is a disease and research is being done. Back when mine started they thought it was all in my head. Lyrica is wonderful but be aware of its side effects. Weight gain and raising your blood sugar. My legs filled with fluid when I was on it so I don't take anything now except amitriptiline at bedtime. If you get your restorative sleep, which the amitrip allows you to do , you are a lot less achy the next day. If you aren't on a med like it, you might want to run that by your doctor.Good luck. Will be thinking about you!
Posted 6/21/2012 1:54 PM (GMT 0)
Hi, Beclee, and welcome!  Well, I've had a great life in spite of this illness!  Once you find what will control your pain, you can work around fibro to do the things you want to.  I've raised three children, traveled over seas several times, snorkled, parasailed, stood on a gracier in the Canadian Rockies, etc. all with fibro plus other illnesses I have.  I keep a positive outlook on life and take each day at a time and have thoroughly enjoyed most of my life.  If I dwell on how I feel, I become miserable and convince myself I can't do a lot of things I really CAN do!  Now I always try things and 90% of the time amaze myself.

 

Fibro also is not supposed to be a progressive illness so you shouldn't get worse.  You will have worse days and better days, though, because it waxes and wanes but I've had it for 25 years and it has not progressed.  I have gotten worse in some areas but found out that I had another illness causing the pain besides fibro.  Plus, I'm 25 years older and we all get more aches and pain as we age.  But fibro isn't causing it.  When I was getting worse I saw a rheumy and he discovered another illness.  I was put on a muscle relaxer and now I feel overall better than I have in a very long time!  So, don't always blame all aches and pains on fibro.

 

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. 

 

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

Posted 6/21/2012 4:36 PM (GMT 0)
Thank you all do much for your comments! I am so happy to hear that you all live your lives! I am trying every day to stay positive and to just take it one day at a time. I have begun to read Fibro 101. I am learning a lot. Thanks for suggesting it. I will continue to ask questions and try to figure thigh inks out. Thank you for your support and friendship.
Posted 6/26/2012 5:48 PM (GMT 0)
Hi,

I really could identify with your fear of not knowing what it expect. I have had FM for 8 years and in those first few years I felt like my life had been turned upside down, even when I wasn't feeling all that bad. I just didn't understand my body and didn't know how to be me with fibromyalgia. It took a while but I have rediscovered who I am and now have a very good life - even with occasional bad days.

Happy smiles to all -

Pat

Blog on life with FM http://imissmetoo.me

Posted 6/27/2012 1:23 PM (GMT 0)
Hi there ~
Getting a diagnosis is scary, however it certainly isn't the end of your life of good and happy times.
I've probably had Fibro for over 25 yrs, that's when I first started seeing Dr's for weird symptoms. I was only diagnosed 5 yrs ago as most of what I felt passed other tests (No MS etc.) I assumed what I was feeling was just how my body was. I'd had leg aches for most of my memory.

Fibro doesn't cause any structural damage, it's a functional illness. So nothing 'bad' is happening inside of your body that will progressively get worse. In everyone that I've talked to, their symptoms range from mildly bothersome to the other end of the spectrum.

When I was diagnosed I was almost happy (bad word to use) because I finally had a answer to what the heck was going on my body, BUT I found that after getting the official word, my mental state actually went down. My advice would be to wrap your head around your diagnosis, become informed but don't 'over-read' everything. I found so much misinformation on the internet etc.

I've had some fabulous years - raised two great kids, worked, vacationed etc. The past 5 yrs have been rough, but I'm learning a lot about myself and how to manage. Really, it's about managing your life, your body, your mind... Learning to say 'NO', avoiding stress, getting GOOD sleep, having a great Dr. and support will help get you through whatever tough days you may have.

Jacey
Posted 6/27/2012 5:38 PM (GMT 0)
I am 53 years old, and I think that I have had fibro most of my life, although I was only diagnosed 3 years ago. The diagnosis came as a relief to me, also. I will say that my life is much better since getting on medication, and managing some of my symptoms with exercise. Although I need to lose a great deal of weight, which I seem to be unable to do, I feel much better now than what I did in my 40's. As others have mentioned, you will have good days and bad days. I try to work ahead on my good days in order to allow for days that I don't feel as well. You do have to pace yourself, though, and try not to overdo. Allow yourself frequent rest periods. be realistic in your expectations of yourself, and acknowledge what you have accomplished. Don't beat yourself up when you have not accomplished as much in a day's time as you wanted to. Exercise, in moderation, can be a wonderful thing. For me, inactivity can trigger a number of symptoms. I must keep moving. Exercising in a warm, therapeutic pool helps me tremendously. Stretching exercises are also helpful, as is walking. Getting enough sleep really helps, as does eating a balanced diet.
Posted 6/28/2012 7:31 AM (GMT 0)
Hi, I'm 31 male work as pharmacist
Beclee ;please don't worry
First at all , no prognosis(any complications) for fibromyalgia,
Second ; I'm taking also Lyrica 150 twice and it's great (only watch yourself because it increses your appetite :-) .. )
Third ; not only medicine but you have to know this is not a disease , it's disorder and you have not worry and accept it and avoid stress
Posted 6/28/2012 4:32 PM (GMT 0)
I experienced some bad side effects from Lyrica. I retained fluid in my legs. It swelled the veins in my legs. I got unsteady on my feet. I gained 30 lbs( all fluid). Worst of all it elevated my blood sugar. Although Lyrica is wonderful as far as controling the pain you have to be very aware of side effects. As soon as I went off of it I started losing and within 6 wks was back to my regular weight without any change in dietary habits. Cymbalta was another med I tried that I couldn't tolerate because of the side effects. So what I am saying is be very aware of side effects of these newer type drugs if you decide to take them.You can't just stop taking these drugs once on them. You have to taper off very slowly. Just my opinion.
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