Seeking some guidance in the world of Fibromyalgia

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djbondi71

New member
Joined
May 28, 2017
Messages
3
Reason
Undiagnosed
Diagnosis
05/2017
Country
UK
State
Oxfordshire
Hello everyone,

I am incredibly new to the world of forums, but decided to give it a go after encouragement from my family and friends.

I'm 20 years old and have very recently (within the last two weeks!) been diagnosed with Fibromyalgia. This accompanies multidirectional and bilateral shoulder instability, however these have been with me for around 5 years now. Fibromyalgia was first mentioned to me back in November 2016, and I'm almost certain that I have never had such conflicting feelings about something in my time!

It feels like the light at the end of the tunnel, the reassurance that I'm not making this all up inside my head, it is real and after around two years of searching, I have the answer for why I feel like this every single day. But then on the other hand, it feels like the aforementioned tunnel is a million miles long, and the path to get to the end is a minefield of stairs, uneven pavements, hills and every other thing that brings on the dreaded feeling of 'this is going to hurt'.

I study Motorsport Engineering and I am about to enter my third year of University. This past academic year has been a rollercoaster, and surviving through exams feels like a miracle, and ever since it ended I have found myself thinking more and more 'how do I survive another 3 years of this??'. I'm part of a racing team, and we spend our year designing, building and competing our own car, an activity that I used to love with all my being, but now I wake up every day with the knowledge that if I want to do what I used to, I'm in for one hell of a fibro day, and that is if I can even make it to the end of the day.

The lack of control over my own life frightens me, and I hope that in being here I can hear some other fibro-warrior stories, and find some comfort in not being alone in the daily battles with pain.

Thank you for reading, I look forward to getting to know some people :)
 

fliktony

New member
Joined
May 30, 2017
Messages
3
Reason
DX FIBRO
Diagnosis
00/0000
Country
UAE
State
abu dhabi
Hello there

I'm sorry to hear that, I hope things get better and that you're granted strength to live every day happily.

You're not alone. I'm 25 years old and been suffering from left arm pain for 6 years, it started in wrist and spread to the neck, I was given the wrong diagnosis until it started in my ankles but I didn't pay attention. Recently, I've been feeling it all over my body and finally diagnosed right.

I'm a full time graphic designer and I draw to feel better. But with my fibromyalgia I haven't been able to do the simplest tasks and it has caused me depression. I'm currently at work unable to finish my tasks and joined the forum to not panic. Typing is causing me severe pain so I will end my response.


stay safe.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
I joined this site just a few weeks ago my self , I was diagnosed with fibromyalgia back in 2012 . At that time there wasn't much information about it enough to understand of what I should do with this enormous whole body pains from head to toes? , and terrifying nerves buzzing and quaking, sleep disorder to the point I can't even hold one simple sleeping pattern. Each day I sleep different time zone so I get daily jet lack. Insomnia with sleep disturbances ( panic attack during sleeping) , fibro fog which some time I can't even speak properly, can't think , I can turn suddenly stupid while can't even walk straight and lost balance at the same time. My eyes can't even look at the light outside. I lost my job, my finances, my credits and my home. My panic attack disorder and major depressive disorder join force to drag my head down in to the pits of hell on the daily bases . I was rejected on disability and out of medical insurance since I'm not yet citizen and got a green card later than the year 1996. ( I came in to US in 1999). I'm out of help . Not to mention the traumas that brought about the symptoms them self still on progresses of grieving I'm just completely out of luck. So I became a living and breathing drugs free fibromyalgia person.
My advice to you is to do research on fibromyalgia diet. Cause we might not think much of the food we eat but our fibromyalgia have more sensitive sense and taste buds than we are. The correct food and supplements you truly need will be the savior of your pains and suffering. Laugh a lot and look ahead . Life full of obstacles just claiming over it one at the time. As myself I might sound like a bad luck right now but good luck will comes around. My fighting day isn't over yet. So good luck to you!
 

WooKoo

New member
Joined
May 5, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
01/1999
Country
USA
State
CA
Hello everyone,I am incredibly new to the world of forums, but decided to give it a go after encouragement from my family and friends. <snip> of a fibro day, and that is if I can even make it to the end of the day. The lack of control over my own life frightens me, and I hope that in being here I can hear some other fibro-warrior stories, and find some comfort in not being alone in the daily battles with pain. Thank you for reading, I look forward to getting to know some people :)
Forums are cool. You'd be amazed at how helpful it is to have a dedicated place to go and just vent if you have to. Where you will be accepted for who you are, fibro and all. People can be very warm and loving when they want to be especially when they share a common challenge. I feel terrible that one so young has this to face in life but then medicine is making breakthroughs everyday why not for fibro, too? I am new to this forum but not to forums in general. I have always found them a great place to go and talk to those that know what I mean with little explanation about my frustrations.

I find that if I over exert, the fatigue that follows is the most annoying thing to deal with. Go all out (as far as I can) today and then rest up from it for three days. Learn to pace yourself. Listen to your body, honey. We have little choice in the matter if you think about it. You can be happy AND have fibro. A sense of humor goes a long way with all challenges.

{{Hugs}}
Sandra
 

1PeerMentor

New member
Joined
Jul 21, 2017
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
PA
Hello all! I just registered and signed on this very minute. I developed FM after a car accident in 1990. Not uncommonly, it took me 5 years to get a diagnosis. I was fortunate to have seen a Physiatrist - (Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.) The first treatment she recommended was stretching that makes a world of difference. That brings me to what I was wondering about in general. I don't see many threads that deal with what ppl are doing to successfully improve and maintain their functioning. That's why I used the username PeerMentor. I've had FM for over 20 years. I've learned many self help methods that are empowering and keep me high functioning. It is extremely empowering to know that you can help yourself!
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
welcome to the forum - this is a safe place where you can vent, share, seek advice and just be among friends who know what you are going through - which is so important with an invisible illness as fibro.

Though I was officially diagnosed in my mid 30's, I did start developing the symptoms in my late teens. So at age 19, I was in quite a lot of pain and would have to deal with bouts of fatigue (and also depression, in my case). I went to many doctors, they often would blame my perfectionist character and would tell me to take it easier. Now more than a decade later, I really wish I listened to those doctors.

So my first advice to you is, listen to your body. If you are aching and are tired, rest. It will be very very hard at times, you want to do so much, but if you push your body beyond its limits, believe me, it will take a huge toll on your body and you will end up like me - almost 40, unemployed, living with family, in pain 24/7. (though this sounds really depressing, I am actually doing quite well. Acceptance after a long period of grieving has helped me)

Try to talk to people about your new reality, but don't expect everyone to be as supportive, understanding as you would like them to be. It is really important to keep in mind that it is very hard for healthy people to imagine the life that we have, with pain and fatigue.

Find a good doctor and stick with her/him for as long as possible. Building up a relationship with a doctor who really listens and understands you is so important. I lost contact with my previous GP's and I now have to start all over with various doctors and it is so difficult. I have a long complex history of illnesses and traumas, and it feels like an impossible task for them to see the whole picture of 'me'.

And no matter what, try to stay positive, find happiness in little things in life and allow yourself to have bad/sad days, knowing that they will pass and good days will come.

All the best!
 

Mosey

New member
Joined
Jul 25, 2017
Messages
4
Reason
DX FIBRO
Diagnosis
05/2017
Country
UK
State
Scotland
I've not used a forum before so I'm not sure if I'm posting this correctly!
Anyway, I totally understand where you are coming from. I have just recently been diagnosed with fibromyalgia and I'm still trying to come to terms with this. I had never even heard of the disease before - I couldn’t even pronounce it. For nearly 2 years I went through various tests to find out what was wrong with me. While these tests showed I had arthritis, the level the pain I was experiencing throughout my body did not match the consultant’s diagnoses. Like you there were times when I thought the doctors didn't believe me when I told them the level of pain I was experiencing. Eventually in June this year I was told I had fibromyalgia ! I’ve tried to do research on the disease but I’m still at a loss. Right now my life is being dictated by this disease and I'm trying to get my head around that. I want to stay positive but at times it's difficult, although I'm relieved that at least I now know what's wrong with me! The hardest part for me is that I can no longer lift my grandchildren and playtime is difficult. However, I know they will help to keep me positive, even when I'm having a bad/sad day.

Mosey
 
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