Old 04-18-2016, 01:00 PM #1 (permalink)
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Default Should I be scared?

Recently I suspected that I had RA like my father did during his life. But after seeing a specialist in the field I found that no I didn't have RA I had OA in more than one joint and Fibromyalgia in mild form. Now some would think that is a better diagnosis but I found myself scared by the one I was given.

Why, because instead of my father's disease I have my mother's disease or two of them. With both my parents I saw vital strong individuals have their quality of life be taken away. But with my mother it was even harder. From the time I was a child my father had RA but my mother was an active woman. She was a crossing guard, a housewife, she loved to walk and stay active. Than the OA started to attack her joints, than she ended up with Fibromyalgia along with it. I saw this woman go from being active to having limited movement. She fought it for years trying to stay active, but than had to resign herself to using a cane than a walker, than a wheelchair. Than came the worse thing of all the last six months of her life she spent confined to bed because her back and joints could no longer support her. This was a nightmare in itself because we had to help her move and because of the fibromyalgia nerve pain this was hard to do, and we had to be careful.

Now here I am a woman in her early fifties once vital herself, having worked as a care attendant and as a file clerk. Someone who like her mother loved to walk. Now I find that I can no longer do the work I use to do I struggle to even hold down jobs online because my concentration and patience level aren't what they use to be. I am tired most of the time and in pain especially when standing for lengths of time. I can't walk the way I use to, so now my quality of life has been lowered the same way I saw it in my mother. So, I am scared I won't pretend that I am not. Doctors can tell me this is a better diagnosis, but I can't see it that way, not after what I witnessed.
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Old 04-18-2016, 07:28 PM #2 (permalink)
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Default Re: Should I be scared?

I do not blame you for being scared, you've witnessed these crappy diseases first hand. But no, I wouldn't be scared for several reasons. First fibromyalgia awareness is growing daily and more is being learned and developed for both of your conditions. Your mothers journey is not your journey. Second, I think maybe you had resigned yourself to RA and already accepted that fait so a change in direction is harder to get your head around.

I'm glad to here your father did not suffer severe RA. I however have a cousin on my husbands side that when she was a child she would and cry all day when the weather was bad. She is our age (50's) and medications have improved and so too her life, but she still watches the weather and schedules her life around it. I don't think any of these are "better" then the other.

I've posted this many times but I always repeat it. In the early 70's my mother died of breast cancer, survival then was very low, today it is very high. It wasn't too long ago that AIDS was a death sentence, no longer true. My point being I truely believe one day soon fibromyalgia will have at the very least a GOOD treatment and understanding if not cured for some.

Fear is normal, but it will pass as you learn more about what treatments work for you.

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Old 04-19-2016, 02:17 PM #3 (permalink)
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Default Re: Should I be scared?

Don't fear because though it alerts us to the possibility of an adversity or danger, overcoming fear makes us to better able deal with the symptoms of fibromyalgia. Overcoming fear improves energy levels, health and other symptoms associated with fibro. Sufferers who fear pain avoid physical activity and actually become more tired and suffer more pain. Fibro sufferers develop a fear of pain and become more aware of it. Patients are advised to focus on lifestyle changes that would reduce pain. Don't allow yourself to be a victim. The battle is worn or lost in the mind.
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Old 04-20-2016, 06:38 AM #4 (permalink)
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Default Re: Should I be scared?

You no what they say, for warned is for told .or is it knowledge is power.use what u have learned ,dont knock yourself out trying to fight this illness. Learn to give your body time to rest.ask the dr for some good high dose calcium and have your vit D checked .as vit D binds the calcium to your bones .
Your not your mum.your not even old .dont let your imagination rob you of your life just yet .as the big man himself said take care of today, and let tomorrow take care of itself.
If u worry about a problem before it's happened you are living it twice.my god don't I sound the I swollod a book lol
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Old 04-20-2016, 08:04 AM #5 (permalink)
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Default Re: Should I be scared?

That's so true, we should not be living with worries from the future, but focus on the present and how we can make our day better.
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Old 04-23-2016, 08:52 PM #6 (permalink)
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Default Re: Should I be scared?

I can't blame you for being scared, actually it's very normal to feel this way. It's very good you came here to share your story with us, I think that helps a lot. You will see there are a lot people here who are also going through a similar path right now; the pain one. I'm just 29, but I already suffer from really bad chronic pain, but I try to keep it easy. Some days are harder than others, but that is why you ought to learn to cope with this, the most important part is to accept it. I have. Once you do it, you truly accept it... you will feel more at peace, I promise. This is a long path though... focus one day at a time. That is what I do... the future is not here yet, all we have is the now!
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Old 04-24-2016, 08:35 AM #7 (permalink)
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Default Re: Should I be scared?

Worry sucks the energy out of life and is a precursor to stress which is one of the precursor of fibromyalgia. And more. I have come to realize that worry is rooted in inability to live in the present. There are seldom moments in life when one does not have to worry about anything in life. Deep breathing exercises are great to counter this well as walking exercises. Joining a supportive circle of fellow fibro sufferers works wonders.
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Old 04-25-2016, 11:10 PM #8 (permalink)
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Default Re: Should I be scared?

I can see how you would feel the way you do. With your dad, you probably always saw his RA. But with your mom you saw what the OA and Fibro took from her. It is hard to be so young, and feel older than you are. Its harder going from being active to not being able to do what you feel is normal. When I got my diagnosis, I was waiting to see if I had Lupus. I am SO happy that I *only* have fibro, but at the same time Lupus would have been a more straight forward diagnosis. With a more straight forward medical plan.
I remember feeling like I got a life sentence when I got diagnosed. I was 30, I was finally relieved to know why I was so tired. But so sad that I was going to feel this way for the rest of my life. Ten years later, I have my bad weeks. But I am medicine free and I am doing ok!
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