Old 01-07-2017, 10:01 PM #1
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Default Completely Lost..

Hello my name is William. I was told Friday by a specialist that he is 99% sure I have FMS. He told me that this will never go away and that I will fight it for the rest of my life. I'm only 20 years old and that was the most devastating news of my entire life. Chronic pain fatigue and memory issues until I die. I'm newly married and worried that if my condition gets worse I won't be able to provide for my wife and our eventual children. It makes me feel like I'm not a man because I can barely do a lot of things due to the pain already and the Dr. Said this was only going to get worse the older I get. What do you all do to cope with it?? I'm completely lost...
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Old 01-08-2017, 07:15 AM #2
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Default Re: Completely Lost..

Hi William

I'm so sorry that you have this diagnosis at such a young age and although I'm 66 I think i can imagine what you are going through.

I was diagnosed just before Christmas, although i've had problems for many years, and I have to say that I've felt better since diagnosis. I feel that I wasted a lot of time worrying and trying to fight it. At one point I was beginning to think that I had dementia. Now I'm listening more to my body and sitting when I need to etc. it's surprising how a short sit gives me a bit of energy back.

Now that i know what's wrong, and have had a long chat with hubby, we joke about it a lot more. When he used to ask how I was i always felt as though I was moaning as the list of ailments could be huge. Now we have a scoring system, 1 to 10. One is pretty good and 10 is about as bad as it gets. I intend to do a graph to see if i can find any trigger points. I once attended a course on Mindfulness and I find that pretty useful. Instead of walking and thinking about how much I hurt and how slow I am I look at what's around me and try and concentrate on that. It's quite surprising what you see and hear that you normally shut out.

I'm trying to keep off medication as I have other physical problems and can react badly to drugs but that is something that you can maybe explore.

I think that your Doctor is being very pessimistic. Who knows what the future holds and what advances there may be in the treatment of FMS. I think that my best advice would be to live in the present and concentrate on finding ways of helping you to cope. Talk to your family and enlist their help. You ARE NOT LESS OF A MAN just because you have an illness. Marriage is a partnership, the good and the bad.

Lots of love and hugs to you xx
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Old 01-08-2017, 10:26 AM #3
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Default Re: Completely Lost..

Hi William. I'm sorry to hear you got this diagnosis. I agree with Janail, I think your doctor was being pessimistic. I was diagnosed at 20/21, struggled to find. a diagnosis since about 18/19. I was on probably every medication there was up until now including probably every pain medication out there. Finally I am on a non-narcotic and I can actually function and am back to living a somewhat normal life. I still struggle with memory issues, but that may be due to something else entirely. It is possible for you to do things. You only have to figure out how to adapt and learn how to live within your limitations. You are blessed to have a wife who can support you. That is half the battle. You are already on your way to living a normal life. You still have the hopes of being able to have children and make a family. Think of all the positive things you have going for yourself. Where there is love there is hope.

There may be some bad days with FMS, but there are some brief breaks. On the good days learn to enjoy things. Take it easy, but take light walks outside. You can do a few chores around the house to help out, but remember to take it easy and take frequent breaks. You may even be able to do yard work if you want if you take breaks and take it easy. It's not impossible for you to work if you find a low stress job that you can manage. Fibromyalgia isn't the end of the world for everyone.
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Old 01-08-2017, 03:00 PM #4
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Default Re: Completely Lost..

Your life has just started.plz don't ruin it by worrying before it's started,it doesn't matter what age you get this ,it's still a blow.
I've had this for years,I have four children,3 grown and a 4 year old.with the right meds I'm still a mum,I may not be very fit,but I keep up and love being a mum,
Face one day at a time.you can't live tomorrow when it's not here.learn about what you can and can't do.your get the hang of finding a happy medium.
Don't give up .
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Old 01-09-2017, 10:37 AM #5
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Default Re: Completely Lost..

Don't listen to that doctor. He doesn't have a crystal ball to predict the future of your life, and he sounds like a sadist to me. If it turns out there are things you can't do the same way that other people can, you will find other ways to do those things. If your wife and you have a good relationship, it will survive and thrive despite this. Information is power. Read up on Fibro and learn all you can. Get a good doctor who will work with you. Join and participate in forums like this one. Join a group where you live if there is one. Get support, and don't give up on yourself. It probably won't be as bad as you fear it might be.
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Old 01-09-2017, 11:12 AM #6
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Default Re: Completely Lost..

Yes my best advice is dont sweat the small stuff...reduce extra stress as far as possible....look after yourself and do things in bite size chunks that you can manage.

In time you will adjust...let your wife help you and do loving small things to show your appreciation ....women love to be spoilt with admiration, attention and kindness.

Keep romance alive and make the small things and good hours count...there will still be lots you can do..it will just be different...and i understand you are grieving for the old you..we all do....but if you join forces with your wife together you can manage this condition.

maybe down the line you will try different medications to reduce the pain ...you are very young so its very hard diagnosis....but dont give up that there will be advances in treatment as you get older.
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Old 01-09-2017, 01:37 PM #7
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Default Re: Completely Lost..

Hi William,
I was also diagnosed when I was 20 years old after not completing high school. At that point my memory was so bad that I couldn't read a short sentence and understand it. I have since completed college with honours and have a full time job. It is always something that I need to be aware of but I have come back from a crisis twice and I'm in the process of doing it again.
Things that have been helpful: sleep hygiene, diet(eating nutritious food), physio(there can be postural issues that cause strain and more pain), pacing(make sure you schedule enough rest in your day), gentle exercise

Good luck on your journey!
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Old 01-09-2017, 02:46 PM #8
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Default Re: Completely Lost..

Hi William

I agree with what the others said, it's hard enough being given such a diagnosis and there are ways of communicating this to you in a much more positive way. Read up a bit on the condition, it may help you to understand it a bit more & you'll also learn your limitations as you go, it's a lot of trial and error finding out what you can and can't manage. Talk to your wife too, she'll appreciate the honesty and it will only make your relationship stronger if can talk to each other about any worries instead of it coming out in anger and frustration instead. It's a lot to get your head around, life sucks sometimes but we're always a lot stronger than we give ourselves credit for.
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Old 01-30-2017, 04:38 AM #9
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Default Re: Completely Lost..

I've had 24 years of a chronic illness, definitely your mind set and overall health/fitness makes a massive difference to quality of life.

Also, your doctor doesn't have FM. They tend to think of any condition as only ever displaying the worst typical symptoms. Flares come and go, the bits between can hopefully be stretched out a bit once you get to know you FM.

You have family which is great, although your young at least you've been healthy enough to take that chance already. I had an early onset illness at age 13, just about unable to walk when I was in my twenty's but I now have a family to.

Learn what you can from others as you've already started to and take it easy
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Old 01-31-2017, 09:18 AM #10
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Default Re: Completely Lost..

Wow! Get another dr. How long has she he been practicing.? Your in a good place here. Tons of encouragement!
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