Help?

Support
1

Hi,
Since my diagnosis I’ve been finding things mentally and emotionally tough. It really annoys me that I’m 21 and people are now saying my life as ended. I know that my life’s not going to be the same. But I’m surrounded by so much negativity that I’m beginning to panic.

I do suffer with anxiety and depression so that doesn’t help either.

What I was wondering if there are any other young sufferers on here, or people that was diagnosed at my age and how they’ve coped.

Thanks Anney.

P.S. I’ve also been told to forget about having kids now as it will worsen my condition and I won’t be able to give my kids the childhood they deserve. Should I give up on having children or are they being too negative?

2

Whoa, Anney! Who have you been talking to? Whoever they are, rip up all of their words and toss them into the wastebasket. Fibro isn't a killer disease. It is a complicated, chronic illness however, and it does take some ingenuity to live with it, at times. For instance, I wanted to go shopping today but was tired and my knees ached. So what I did when I got there was hold onto the cart with one hand and use my cane with the other. Presto, the cart was propelling me along, while the cane was balancing me!

I'm not a young one, like you, but you need to understand that you certainly can cope with this illness. You go to a good team of doctors who help you with the pain and fatigue, you do some light, helpful exercise, try to eat well (because some of the meds can cause weight gain,) and maybe get some counseling for any depression. And Anney, you have time on your side - fibro is being seriously researched at this moment, so better help, and maybe even a cure, is on its way. My rheumy said that better pain meds will be available in about 5 years, so you'll still be in your 20's. Young enough to still have children and live a good life. Please keep that goal in mind. As I said, you have time on your side.

A lot of people with fibro have children, Anney. I don't know if they knew they had it when they became pregnant or not, but they're raising kids. I don't know if you could afford extra help, like a nanny or cleaner, even on a part-time basis, but it would help. A flexible husband would also be a help.

Hope some of this is helpful to you and I'm sure young people will pitch in and help you out.

3

Thank you for the kind words Petunia. It’s not who I’ve been talking too, it’s people who just give me there opinion. (Which is now always wanted). My mum had fibro and she could never do a lot with me. But she coped with it sometimes very well. I’m just finding it so alien at the moment.

I am worried about the weight issue as I am overweight already. I would like too loose weight but I am finding it so difficult.

I hope things get better. My biggest worry at the moment is employment. I left my job in October 2012 because I lost my mum and the company weren’t very understanding and made my life very hard. But now I can’t get a job, which worries me as I don’t know how I’m meant to survive. My fiancé is working for his dad at the moment because he has epilepsy (on medication and hasn’t had a fit in 5 years) but no one will employ him.

Thank you for replying :slight_smile:

4

I'm 23 and have fibro along with an autoimmune disease called psoriatic arthritis. I have similar thoughts sometimes, but honestly you can still lead a normal life. I did have to change my plans around a bit, for instance i'm waiting longer to have children because I can only study part time and I want to finish and have a stable job. I think if you want to have children then you should, there are plenty of wonderful parents out there with all kinds of abilities and disabilities.

5

I had to fight for years to get diagnosed with fibro, as i knew i had it by the time i was your age. I wasn't diagnosed until 2011 though, as no one believed that i was really in pain and even through two hospitalizations for psych the only thing the docs talked about was psychosomatic bullshit. I totally get where you're coming from; all the worries about what you're going to (or rather not going to) be able to do as you get older, whether or not to even *have* kids, even getting married, because who wants to watch their fiance succumb to a disease and wouldn't he be better off with a healthy person? All these stupid things crowd up my head and i have no idea how to go forward with my life now. I don't know if i'll be bed-ridden by 40, or dead by 50...

I guess i don't have any answers, but know that you are definitely not alone. :/

6

Thanks. I would love to have kids but its just money worries. I think I’m just finding things very daunting at the moment. And I don’t know which way to go to sort out which problem.

I’m currently only on amitriptyline and it does nothing for my pain (I know it’s not meant too) i know for sure that is one thing I need to press my doctor about

7

Oh my dear,

I cannot imagine how I would feel if people were behaving that way around me.

I am not as young as you, but was diagnosed at 30 after suffering for 5 yrs with severe chronic pain that the docs just gave me lots of vicodin and tramadol. I have had joint pain and muscle pain my whole life.

Your life it NOT OVER. It has simply changed.

My daughter is going to be 14 in a week, and I am 32. My child has Cerebral Palsy and needs a lot of nursing level care in the home. She uses a power wheelchair to get around but needs me to dress, bathe, bathroom, prepare all food, activities. It is a lot everyday but still I do all of this all alone. When I had some cysts and endometriosis I suffered a severe flare that lasted a few months. For weeks at a time I was so exhausted I needed a caregiver for my daughter and my home. I could barely sit in a chair or eat. After my surgery to deal with the reproductive issues I have not had any repeats of this. I did have to make some changes to the items I had . I had to spend a lot of money on a car with a wheelchair ramp built in since I could no longer transfer my daughter in to the car. I had to buy a different bath chair since I could not lift her anymore. I had to put the washer and dryer on pedistals so I could easily get the items in and out.

I will tell you that I do not work. There are thing I cannot do. I have to pace myself each day and choose what challenges I will take on. Stress from people's attacks are very damaging.

How I cope is by just staying engaged. When I had to stop working I struggled to identify "who I was". And some days I still do.

I found some "hobbies" that have evolved into real opportunities. I am a volunteer with a 501c historic preservation group and for fun I lead guided tours through a historic site that is haunted. (Ghost Adventures came last year) I take my daughter to experience all sorts of things in the world and I do this all on my own most of the time. Occasionally my girlfriend will come along to ice skate, or travel with us. But even with this condition I took my daughter to Alaska for a 9 day trip all on my own.

Life is still very possible. You just have to make a bit of adjustments. Being pregnant might be a challenging time since you will need to ensure you do not use medications that are harmful to a child. But when that time comes in life, bring people into your life that are supportive. I am not going to lie. Having a baby is a lot of work...even without a chronic condition, parents are tired. But you do what you can and stay happy. My daughter's favorite thing in the world is to cuddle up in my bed and read Harry Potter books or watch a DVD together. It is not all about GOGOGO. I hope this is helpful to read. Dont let people get you down. I am still moving mountains over here, just using a few different tools to get that job done.

8

I’m very lucky my doctor is willing to help. I just feel so lost at the moment. I’ve got so many thing going wrong for me and I have no idea what to do. It sucks because my mum is the one person who could have helped and she’s not here too :confused: there are so many things I want to do but I dunno now if I want to do them. I know what you mean with people thinking your faking. My fiancé’s parents have no idea. They tell me too suck it up and that I should get a job in apple or naming these clothes shops that I should apply for. 1 I don’t even know what my limits are yet. I took my puppy for what I thought was an acceptable walk (2 miles, could do that easily before) and that was Monday and I’m still feeling the effects of it now. There’s times I wonder about using a walking stick and I stop myself.

9

Thank you so much for this reply.
This really was an inspirational read, it’s just about boundaries. I have had a very stressful 6 months. My mum passed away, people we thought were friends left, quitting my job and of course the lack of income. My dads disabled so we don’t technically have an income.
I am doing an art course at the moment and I do make jewellery (earrings mostly).
I’ve just lost the confidence to do it.
But this has really helped me feel a bit more positive and hopeful :slight_smile:
I hope life brings to many more things to treasure and love

10

hi anney, having children is a personal decision that u once u feel better should make and u alone. dont listen to others, listen to your body and what it and your mind tells u. if u think u can do it then do it, if u think u can do it try hard at it, if u try hard at it and u can do it then go for it. and at your age life is not over it is only changing and the experience u gain will make it a change for the better with a few ups and downs along the way. dont let anyone influence u or your inner strength for u as with many others are stronger than u feel on the outside and with a strong inside u will find ways to work with what happens on the outside.

11

HI Anney - I am not as young as you think - but I think I can help you. I am so sorry about you getting Fibro at such a young age. It's a challenging illness to have and you need to take one day at a time in dealing with it, I am happy you are on this website. I just love keeping in touch with my group here and emotionally and mentally I have really improved since being connected to this group of wonderful people. I, too, suffer from depression and anxiety - but my meds keep me on a even keel. I have two friends who got their Fibro at the ages of 20 and 30. They both had healthy pregnancies and they were watched very carefully by their doctors due to the Fibro. Your biggest challenge would be - how can the doctor make YOU comfortable through your pregnancies?? Don't give up on having children, Anney. Do some research about pregnancies and Arthritis - Fibro too. Get familiar with the meds that are out there to help you and I am sure a doctor can help keep your pain at a minimum. I got Fibro 1 year after having my second child and I did quite well. However, now that I am older, the FIbro has progressed. But my kids are grown now and can take care of themselves.Don't listen to those that tell you to forget about having children. There are so many Fibro patients (women) that have had healthy pregnancies and good deliveries. Hugs!! Laurie

12

I had 2 kids after being diagnosed with fibro and it is going to be ok.(26 when diagnosed) I actually went into a remission of sorts while pregnant. Yes your back will hurt more or your muscles will cramp up but you can do it! I am now 38 I had my last 2 kids at 29 and 32. All is well. I hurt on a daily basis and yes I am exhausted but you can always find small ways to hang out with your kids even if it is curling up under a blanket and having family movie night.

My daughter is turning 21 in May and has also been diagnosed with fibromyalgia. (Back when she was 17)She deals with the pain like I do, one day at a time. She is also planning on making me a grandma soon and I am looking forward to that. I really hope this helps make you feel better. Your life is not over, it sucks to hurt at times but you can do it! You can be a good mom and not run around with them, when it comes down to it, the hugs and the closeness are really all that matter.

My email is ■■■■■■■■■■■■■■■■ if you want to email, and my name is Liz

Hugs!!

Liz

13

All of those people giving you unsolicited (and incorrect) advice need to be told to mind their own business. Fibromyalgia will not kill you. The most important thing you can do is make sure you have a good doctor who listens and will try different things to help you until you find a med or meds that work for you.

I was just diagnosed with fibro in December and I have had Lupus for 4 years. I work (part time right now), I take care of my 7 year old and I am thinking about going back to school. You can indeed have a life.

Unless you plan to have children immediately, I wouldn't even worry about that right now. Focus on working with your doctor to get the fibro and depression under control first.

Best of luck to you,

Sharon

14

Dear Anney,

PLEASE do not be worried about what people say.. my best advise to you is that you must accept this condition as being part of your life .. you will have bad days but you will surely have good days .. children help .. I also have a son and I must tell you that he is sometimes the only reason I get up in the morning .. he gives me the energy I need to have a «normal» life. Don't give up on your dreams .. you are very young and you should be happy that now there are lots of information about this disease.. I'm now 39 and I was diagnosed only 5 years ago.. I believe I have it since teenager.. so you can imagine what I suffered because everybody thought that I was some kind of maniac because everyday I had a different pain .. one thing you HAVE to do: have patience with yourself, don't blame yourself whenever you can't do everything like you used to do .. the best thing is to respect yourself and don't let this disease take you all the good things in life

take care

love

rc

15

Hello Anney,

I will be 22 on February 18. I have been living with fibro since I was 18 and have been told many things. However, I actually posted a discussion a few days ago regarding having children. Search in the discussion search "getting pregnant and having children." People on here had a lot of kind words and advice for me, and I feel it will do you well also. No, your life is not over, but your quality of life depends on how bad your fibro is, along with, in my opinion, your financial well-being. A lot of us with fibro, it seems to me, are low income or become low income with no insurance and no job, often times (this is so for me) because of their fibro. With no money, insurance, or job, things can get pretty difficult. Also, a good support system is important. For me, my support system has always been my husband, but I am gaining a support system via this online support group.

So, basically, my advice is this:

Keep working as long as you can. If you are able to make money, do it. If you have a good support system, utilize them. If you have a job with insurance, keep it as long as possible. If you have to, figure out how to get less hours or a lower stress position, but by all means KEEP YOUR JOB AS LONG AS POSSIBLE.

Personally, I left my job thinking it would make me feel better because I was told "it is all because of stress; or "It's because of work." by some doctors. I left my job without any real plan. I had benefits, I qualified and was already utilizing FMLA, and I could provide more than half of the support for myself and my husband. Now, attempting to find a job is impossible. Since I left that job, I went to work at another low stress job, and I got fired for missing work due to incredible sleeping problems involving insomnia. I tried to work at another job, but I was going through a flare up at the time and could barely stand(the job required I be on my feet for extended hours).

If you do have to leave your job, make sure that you discuss it with your doctors first so that there is someone else aware of what's going on. Then, make sure in your resignation letter, you include pain & stress due to fibromyalgia as the reason for resignation.

16

Hi River, Yeh your right I should listen to my body. It just overwhelms me sometimes when all I get is negative feedback. It's nice to look at these comments and have such positive feedback off some wonderful people. Thank you so much

17

Hi Laurie, Thanks for the lovely reply. Thats what im worried about is that I got fibro so young, then when I get to the age I wanted children that I then might not feel I can do it. I am going to the doctor soon so this is something I will discus with him. I'm lucky that my doctor is very helpful and understanding. *hugs*

18

Hi Liz, Thank you for the reply. I'm sorry to hear both you and your daughter suffer from it. My mum had it also and she wasn't a run around mum. But It does scare me when I think of the pain she was in. Aww I'm so happy your daughter is thinking of having children. I'd love to talk to her if it was possible?

Hugs Anney

19

Hi Sharon, I wish they would mind there own business too. I've been trying to get a part time job but finding it very difficult because once they find out about my fibro you can see the look in there face and I don't get the call back. It's very frustrating.

With all the negative comments I do worry about my future with fibro. But it's nice to hear from people like you who do lead a life.

Thanks so much Anney.

20

Hi Rc, I do get annoyed when I can't do thinking I use too as I was a fairly active young girl. I was planning to going back to athletics to start throwing the hammer again but I think that is one goal I can leave in a box. Thank you for the lovely positive message, it's nice to have a beacon of light like this site when in my life I've got a dark storm.

Love Anney