19 with fibro and cfs...

[Sabrina]

I am 19, and have had fibromyalgia for about 5 years now...

When i was first diagnosed, it was extreme and they thought that i had lupus or arthritis, I was missing tons of school because there were days that i could barely walk. The past couple years have been less severe, but its still with me everyday, obviously.

I am a server at an assisted living home for seniors and i recently just started at the front desk. Working in the dining room has been a lot for me, because i'm constantly walking and lifting trays and doing dishes. Im also very small, im 4'11 and i only weigh 82 pounds, so its very hard for me. But i push myself because i dont like feeling in the way or like a burden or whatever.

This past month has been especially tough for me because i'm having a flare that is worst than ive had in years. Its very hard because i'm not a complainer, so i just don't talk about. All of my friends know that i have both Fibromyalgia and Chronic Fatugue, and i know that i cant expect them to be experts but ive explained to them what these conditions are and how they effect me. It really bothers me though when they say things like "how are you tired" or "how are you exhausted from sitting at a desk all day" or some people say im lazy as a joke.

I guess im just wondering if you have any advice? My doctor reccomended me to join a forum about fibro because people will understand where im coming from

im at the point right now where it hurts to hold a glass of water and my skin hurts with clothes on it, but i still have to work. So when im at home, all i do is maybe have a bath, sleep and stay in bed. If i do anymore, it takes too much out of me. I'm trying to pace myself better than i had been, perhaps thats why i'm having such a bad flare.

Its also funny because i work with seniors and i'm 19 but i feel like a senior most days :lol:

Thank you for taking the time to read I guess im just looking for some encouragment and understaning. Thank you to anyone who takes the time to reply! <3

 

[CatherineTheGreat]

Gosh I thought I was young. I've had fibro for 4 years and I'm a couple of months from 22. I couldn't imagine having to handle this as early as 14! I was a mess at 14. That must've taken a lot of strength.

I can't speak too much to how to handle work because I've failed every time I've tried to hold a job. The thing that worked best for me was leveling with my employer and getting 2 hour shifts 5 days a week instead of fewer longer shifts. That is, of course, only ten hours so that might not be an option from a financial standpoint. Even that I couldn't keep up with for too long.

As for friends, it really depends on how much its bothering you. For me, when my friends gave me shit for feeling bad, it really tore away at my self-worth. Since I was already dealing with depression and anxiety due to unrelated factors, I cut most of them lose. If it's bothering you a lot it might be worthwhile to identify the friends you really cherish, and level with them about how it's affecting you. If they can't give you what you need it's worth considering telling them to go **** themselves. "Don't give me shit for something I can't control and which is incredibly painful" is a pretty easy request, and if they can't meet it then it may not be worthwhile keeping them around. If you had cancer or some other well known illness most people wouldn't give you shit, and virtually nobody would tell you to tolerate it.

 

[CatherineTheGreat]

As a side note, I've never worked with seniors, but I volunteered with kids (mostly 10-14 year olds) a lot before I got sick and continued to do so for several months after. Kids don't give you shit. If you tell them "I can't do that because I have fibromyalgia which is a painful illness" they're just like "okay." They don't demand you explain or justify yourself further. Even a lot of teenagers are usually just like "Damn, that sucks." I think adults need to take a page out of their book.

 

[Sabrina]

Wow thank you so much for your reply! You are so strong to be making it through this! Unfortunately I have to work as much as I can because I have to pay for my university which is 8000 a year but it's really taking its toll on me!

As for the friends thing, it just bothers me that I don't have anyone who I can vent to about this kind of stuff you know? I live with my dad and he doesn't understand how fibromyalgia effects me, he just says he's sore as well. And I don't like talking about it to my friends because I don't want them to think I'm complaining, I guess it's my own fault for. It talking to them about it. I'm really thankful for websites like this though! Because everyone here understands and we can be of support to eachother!

Thank you so much! I hope all is well <3 sending gentle hugs your way!

 

[Peaceandquiet]

Hi Sabrina

In my head, I am going back to when I was your age and remembering how difficult it was to be 4'11" and expected to be able to do what the others found easy because of their height advantage. I wasn't diagnosed with fibro until more recently but when I was your age (40 years ago.....seems like yesterday....it goes so fast!) I still had lots of health issues that went undiagnosed for many years. I pushed myself beyond belief in order to keep up. Here I am now, with arthritic joints from overuse, permanently damaged ligaments and tendons from overstretching or overreaching and a whole lot of regret. Because you are small remember to stay within your own limits no matter what the others say or joke about. CatherineTheGreat has a fabulous attitude and I thank her for those comments. So strong and forthright. Keep your chin up, Sabrina. Develop an attitude that 'tells them where to go' and keep yourself safe and well. There is a long road ahead and I wish you all the very best.

 

[Sabrina]

wow thank you so much! I know that i've already hurt my back and aggravated my tendonitis! so im thinking if this is how its ALREADY effecting me how will it in the future. You are right! Thank you for your insight. It is so hard for me to say no or ask for help, i have to get better at this and take care of myself!

I wish you the best of luck! Thank you so much!

 

[sunkacola]

I was raised to be self-reliant. Basically I learned never to ask for help, because even if I did it would probably not be forthcoming.

But, I would have been better off in my life if I had learned to ask for help, I think, and learned how to accept help graciously when it was offered.
some jobs take two hands, some take four.

Me, now, I still don't ask for help, but then again I don't have anyone to ask for help anyway.
But my attitude is I can do anything that needs to get done - I may just have to find a different way to do it and it may take longer.

Last fall I repainted the exterior of my house entirely by myself.
It would have taken me about 4 days before Fibro, now it took me three weeks.
And a lot of pain.
But it got done.

You can do anything that a bigger person can, but you have to find a different way to do it and it may take longer and you may not be able to do it as much. And that is only reasonable.

I think if you have an attitude of "I can do this!", and look for ways to do what you need to do without hurting yourself, people will notice that you are trying hard and working hard. Then if you ask for reasonable help, they will be happy to help you.

That is better than pushing yourself beyond your limits and being sorry afterward.

 

[Eyesup]

I really can't add to much of what everyone else have expressed other then to tell you I'm in admiration of your ambition and effort. Your friends and colleagues do not understand just how much it takes to function with fibro but I think almost everyone here does and we all respect and admire your efforts.
I guess the only thing I can add is to keep trying things that are known to help with CFS/FMS even if they only give a little improvement several little things can add up in a big way. And do not worry of others judging you. You know who you are and you know you do your best and if not good enough for them then find others that are good enough for you because if that's there attitude then they are not worthy.
There is a terrific blog called the spoon theory, perhaps if you read it and think it might help print it and pass it out to those that love you and are trying to understand.

 

[dawn610]

I feel your suffering believe me, I started with this horrible condition when I was 18, probably had it longer but didn't get diagnosed until I was 18. That was 30 years ago. My group of doctors say that I have the worst case of fibro, migraines and TMJ they have ever seen. I also have Raynaud's and bordering on Lupus as well as CFS.

What I would like to tell you as that I have never given into my conditions. Despite all the pain and never sleeping I have always pushed myself everyday knowing that when I get home...then I can crash. I tried all the fibro medications on the market since I actually work for doctors. They did not help me. I do not take pain meds as I believe fibro is more of a nerve issue not pain issue. I have two children and animals. What has gotten me through all these years is my strong will (most people have never understood my conditions and just thought I was complaining including my family until I brought home a note from my doctor..lol)

I used to not be able to hold a pot of coffee without my arm shaking all over the place, my body was so week and my husband could not even poke me without me screaming. I have horses and I understand most do not but I have used them as my form of therapy

Working with them (as excercise) as riding them has greatly improved my strength. I can now lift a 5 gallon water bucket over my shoulder. My left leg is still weak and my pain is still there, but I am stronger. Working in the medical field for 33 years, I truly believe pain meds are not the answer but that taking something for anxiety or stress is as our fibro condition started from something along those lines...so I am told. I also believe if we keep ourselves active, we are helping ourselves. I still really never sleep but I actually get through the day just fine as I have been like this for far too long and I am used to it.

I can promise you, it does get better if you don't give into all the nonsense out there and take control of your own life and do things to help yourself.

I hope anything I have said may help. There are doctors who actually understand us. It took me a very long time to find the right one.

 

[medicmurphy]

I agree with Dawn. I as well have tried almost every med indicated for Fibro and CFS and I admit that exersize helps. I force myself to keep active as that is the only "medication" that helps, pain wise and mentally. I celebrate every milestone I conquer. On Saturday I ran a 5k in 30 min. with my sister. In August I am running a 10k. Two months ago I was stuck in bed or on a couch. Perhaps this is a good spell for me and in time the shite will hit the fan at some point. What this does show me is we can experience remission like episodes.