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Jordan

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Joined
Jan 2, 2016
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29
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DX FIBRO
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00/0000
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US
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Pa
Today I have brought myself to ask me the biggest question I have been asking myself since I have been diagnosed with FM. How at 19 years old Almost 20 explain to my friends and family besides my mother who knows because we are so close what I go through on a daily basis. Between the pain and depression iam seemingly losing all my close relationships or at least in my head iam. I no longer want to do anything, wether it be go to class, go out on the weekends or even just go out to eat. Iam trapped in my own head and body with pain that grows every day and depression that no matter what positive thinking or doing things that I enjoy drags me back into this dark hole. I want to explain to my family and friends that it's not me that's not trying to keep in touch or spend time with them but someone who is trapped and taking my normal self over. The thing is I don't know how my friends will take it, I sometimes wish I had something that sounded cooler or was easier to explain so they would understand but to say I have depression and this pain that never goes away and when I say never besides for maybe an hour a day total seems impossible for me. It's not that they won't care but they're young and stupid and still kids and while iam the same age it seems I've had to grow up a lot quicker then anyone that I know. I feel like I'm losing my life before I ever really got to live it and I worry that feeling so old this young, what's gonna happen when I actually turn that old?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Oh my love you poor sweetheart. My heart goes out to you...you are so young for this. I got fatigue in my late 20's and pain in my 40's and that has been hard to bear. I can only imagine how it is at 19.

Have you seen a rheumatologist who could try you on some medications to ease the pain and are you open to trying an anti depressant that might help life the darkness you are experiencing.

As far as your friends go their is a brilliant video on youtube by haullie volker called voices of fibromyalgia. It only plays on laptops not on android tablets or iphones but if you watch it and feel it explains you pretty well you could copy and paste it in emails to your closest friends and family.

There are other awareness videos on youtube ...some are really good. I don't think we are allowed to put links on here but just google fibromyalgia youtube videos.

Their is also lots of factual info on fibro websites you could print off for others to read.

Your fibro wont necessarily get worse but if you could get some pain relief perhaps you could get back to enjoying some things. You might loose some friends..like you say they are young and free and even mature people don't get us very easily and can loose patience.

BUt i am sure the best ones will stick around. Try and have girly nights in...explain what you can do and how much you would appreciate it if they could spend time with you doing quieter things.

I wish i could help more really i do. You are clearly trying so hard and it does take a long time to come to terms with this illness and find your new path in life grieving for the old you is natural and will probably come and go over the years.

Hopefully there are some younger people on here who can comment better than me. TAKE CARE HUGS TO YOU XX
 
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Jordan

Member
Joined
Jan 2, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Pa
I have been prescribed symbalta, lyrica and trazadone. I was put on them a couple weeks ago and so far no relief but they said it could take a while. Iam seeing another rheumatologist tomorrow and then eventually I have an appointment with another from the Cleveland clinic so hopefully we can figure something out.

I will have to watch those videos I was not aware of them so I will give them a try thank you so much!

Hahaha girly nights sounds fun except iam a guy. I know it might not seem like it because of all the venting but that's the problem with my fibro because I'm not aloud to be sensitive or talk about it and I have to suck it up because I'm a guy. But let me tell you this by far the worst pain i have ever endured and I have had hip surgery, torn ligaments pretty much everything from sports so it's been really tough to talk to my friends and family because like I said I'm supposed to just suck it up and deal with it.

Thank you so much though for your kind words and your words help just as much as someone my age iam very thankful for your comments!
 

AlaDeb

Member
Joined
Jan 1, 2016
Messages
21
Reason
Undiagnosed
Diagnosis
12/2015
Country
US
State
Al
Keep seeking help. I have found my best days follow a really good night's SLEEP!!! Last nite I took my Trazadone and went to bet at 7:45;
had a great day today.
I was able to play tennis for over 2 hours. csme home and walked my dog, did housework. Wonderful day.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
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US
State
OR
Hi Jordan,

Fibromyalgia is really hard to understand, even for those of us who experience it.

We used to have a fellow on here who went by cmetryme - he suggested giving people a little fibro demonstration by having them put several clothes pins on their skin for a period of time. I guess it helped them understand the idea of constant discomfort.

I can see where a young athletic man would feel a lot of pressure to tough it out and just push harder. That works with a healthy body, but not a fibro body. Fibromyalgia is a rope. You can't push a rope.

I had a friendship blow up because of my fibromyalgia when I was first diagnosed. To be honest, it revealed how self centered and ugly this individual was. Although it was painful and I am still angry about it, in the long run I am better off without that individual in my life.

Most of my friends and all of my family have been really great, even though this is hard to understand. It makes me appreciate them more than ever. I hope you have a similar experience.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Oh Jordan i am soo sorry for the mistake i have a cousin who's a girl with that name and i assumed wrongly because mostly it is women on here.

I totally understand that as a guy you are programmed to not complain but please stay on here and don't feel you have to suck it up alone.

I can see it's even harder for you with a load of young male friends and of course the pain is that bad ..we all understand...mine is worse than a broken foot I've had and labour pains much of the time all over (not that you will ever have those but you get my drift of understanding)

DK is right you cant push beyond your limits you have to try and learn your new limits which might not be much some days.

Technology could help with typing...i think it was DK Engineer who told me about lightio keyboards and speaking facilities on computers.

I hope you have some luck at your appointment and keep pushing for something that helps.

Take Care. Always remember how brave and strong you are dealing with this illness.
 

Jordan

Member
Joined
Jan 2, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Pa
Dk I really like that idea for a demonstration because that gives just a little insight on what we go through and if that is difficult for them to deal with for a day they can kinda see what we go through times 100 haha on a daily basis. I also like that analogy with the rope.

I'm sorry that you lost that friendship but you are better off, the negative energy they would have continued to bring into your life if they were still around is not needed and I know it must be hard not having them around but you truly are better off.

Hahah it's ok willow it happens and yea iam starting to realize that it's mostly women, I'm just the unlucky guy lol.

I catch your drift and that is truly painful, I'm trying to learn my limits but it's very hard being in school because I still wanna try and be involved so I don't get shut out completely but I see the side effects of going over my limits because today I cannot even walk. I layed in my car for over an hour because I couldn't get up and missed all of my classes and my doctors appointment went terrible as he did not say one thing to help just asked me questions and told me to wait till next week. Oh well though what could you do just keep chugging along. What needs to happen will happen eventually I'm just trying to be patient.

Thank you for all of your kind words and encouragement, it is so helpful to have you guys to talk to. Iam so grateful. Hope you girls have wonderful days today and many after.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
You sound such a great young man...no wonder you are close to your mum she must worry about you but also be so proud of you.

i wish cmetryme was still on here for you but i haven't seen a post in a while.

There are people on here who take tramadol and there are other drugs so i hope your appoinment with the cleveland doctor goes better.

Its all very different in the US.

You need some help with pacing yourself and finding a lifestyle that minimizes the pain after too much activity.

We have people called occupational therapists and pain clinics that sometimes have someone who can help with this and the psychological affects of dealing with a chronic pain illness.

I can remember when my fatigue hit in my early 30's driving home 20 minutes in my lunch break crawling into bed for 25 minutes then driving back to work for the afternoon i was so unwelland had no idea what was wrong with me....so i get the laying down in the car and missing classes.

Please let us know how you get on....so many people come on here you get to know them and then disappear and you never know how they are doing.
 

Jordan

Member
Joined
Jan 2, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Pa
She is worried, very worried and it's hard to keep her from coming out to school to take care of me being that I'm 5 hours away haha.

I will definitely keep in touch and let you know how everything goes! Thank you again so much
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
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US
State
OR
Thanks Jordan, I appreciate your kind thoughts. You have such a positive attitude and sense of humor - that is a great strength

Willow is spot on regarding pacing. I just wanted to add that if you pay close attention to how your body feels while you are physically active you will be able to pick up on the signals you are overdoing it. For example I know I need to stop when the pain shifts from mostly general burning to more sharp, shooting pains that don't go away when I rest.

Hopefully the doctor will be able to help you next week. It can be very frustrating to have to wait.

Give our best to your mom too!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I'm so sorry you have to go through this at such a tender age... but let me tell you one thing, and this comes from someone who started to experience pain very early on, I'm talking mid and early teens. i know it's hard to believe this, but things will get better, as years go by you will learn how to cope with this, this disease will push you to do that... and it will also prove to be a real friendship tester... don't forget what they say: those who mind don't matter, and those who matter don't mind''. I know it's hard to understand this right now, but after some years you will start to see things differently. I promise.

Right now (and this applies to all young fibro sufferers out there) you need to think about yourself, your own feelings and your well being. Stop worrying about what other might think about you and your disease now. You need to separate yourself from that... because in the end of the day what others think make little to no difference in our lives... it's what we think about ourselves matter. Focus on that and nothing else, if you start worrying about what everyone else thinks or if they don't understand you... this path will be harder on you

Best of luck and take care everyone, specially you Jordan, I hope you come here and read this one of these days. When you get older this will make more sense to you, what I just typed.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
This disease seems to drain the life out of us really, but we need to readjust and accept we need to live a different life...
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
Hi Jordan. Sounds like you are indeed mature for your age. Fibro probably had a lot to do with it, I think it slows us down physically so much that emotionally we have to grow up . I can't imagine being so young with a condition that not only slows you down so much but like you said it's not as "cool" as others. But trust me it's just as isolating at any age...we don't look sick so it's just so hard to believe. And you don't have to be young to be stupid and immature.
Jordan, I truely do not believe you will live your life fibro bound. There are many who do recover, I think the greatest thing we can do is figure out what causes it to begin with, no matter how far fetched it may seems, if it's possible investigate it. I have no doubt your mom isn't looking into what might help. Please don't let anyone tell you it can't be cured and or brought into a place that you can enjoy life. It wasn't long ago that cancer and AIDS were death sentences. You are to young to remember this but your mom will verify.
I think finding ANY. group in your age catagory that either has an illness or has cared for someone with an illness would be good. As much as you you would like to be with the "in-crowd" your body wants to be with the "stay in" Friday night crowd! Bummer, but you need to keep your mind and body as stress free as possable so you can fight again tomorrow. Find friendships that fit you, not friendships that you think should be fitting.
From your tone I'm guessing you've always been pretty easy going kind of guy that never had to fight...now you do and now your going to find out your an a** kicker!
 
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