Can anyone relate to me and the things I feel?

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earthxmarktwo
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/21/2009 6:59 AM (GMT -7)   
Hey everyone, I'm new here. I suppose this will be a long post, there's a fair bit I need to get off my chest. I hope you guys can relate to me, because sometimes I feel as though I'm the only one feeling these things.

I'm 16 years old, but I've been having symptoms of a currently undiagnosed condition for so many years it's now my life. I feel pain just when people touch me and it gets worse over a few seconds, if that makes sense. I have to go to the toilet way more than is normal, and often I'll leave the toilet feeling as though I still need to pee. I have really bad fatigue, often I'll feel tired all day, and I'm caffeine intolerant so I can't drink coffee to wake me up. I have random pains in my stomach, my legs, my arms. My lower back is often the first place to start hurting if I do anything abnormal, like going out shopping with my Mum or anything. I have bad vertigo, sometimes even while I'm sitting down, and I am always walking into walls or seeing blue overlay type things over my visions from dizziness. Poking myself, especially my arms, can hurt for up to 4 or 5 minutes on worse days. When I press the areas that are supposed to hurt more in people with FMS they can hurt for up to ten minutes or more, especially the ones around the neck and lower back areas.

These are just some of the symptoms, the most prominent, and I've been to many doctors, seen specialists, had numerous tests that all say I'm fine. The problem is I was abused by my stepdad as a kid, so when the doctors listen to me, all they hear is rape victim and not one test is done before they're trying to push me into counselling. I know it sounds unlikely, but I've dealt with all those problems from the rape, and I've gotten over it by myself. It's just that nobody who can help diagnose me will look past it long enough to give me a chance.

I just need to hear that someone can relate. That someone out there feels what I feel, and that I'm not alone. I would give anything to have a diagnosis, to have some kind of treatment. I had to drop out of school, I can't get a job, I can't even get my license because I'm too afraid of hurting someone (if I get dizzy and lose control) I don't have a lot of friends, I hate when my brother has people over because it's so glaringly obvious I go to the toilet every ten minutes (especially when trying to get to sleep)

I don't know what to do. I just wish I could be healthy. But I can't get any help without a diagnosis, and nobody is giving me a fair go. I even got told it's just normal teenager stuff. And the same doctor said that just because I'm not out partying or somewhere my mum doesn't know about, that I'm not normal, and I must have a mental illness. I just love my Mum heaps, and I don't see the point in late night parties, hangovers and general teenage idiocy that people buy into. I just want a job, a license, and maybe even to go to Writer's school and try and get my novel published.

Does anyone have these problems, these symptoms? If it helps at all, three years ago at school I was in an enclosed shed with people using fibreglass resin in the next room. The smell nearly made me pass out on numerous occasions, and that was when I started getting severely worse and had to leave school.

Any input about anything would just make me so happy I can't describe it. Hearing from people who know what it's like to be me, because I was beginning to feel like the only one.

Thanks in advance to anyone responding,
Jenna

Added : I just read the Fibro 101, and to make it more clear, I have about 80% of them. I read stuff like that, and I wish someone could just SEE what is wrong with me. People put so much into what they can see and toss aside what they can't. I probably seem like a callous person from this post but I'm not good with people (comes from being pretty much restricted to my house, all the time.) I'm sorry if that's the case.

I should point out, despite all the things going wrong, I really am a very happy person. I have three best friends, they all know everything wrong with me and help me deal with my worse days. I have the best Mum in the world who will always help me in any way she can. My love in life is writing, so luckily I can still do that. I have trouble with my speech almost all the time, but I can write, and that is enough for me. I don't get depressed, and if I have a pity party day, there are four people ready to make me smile, laugh and just be happy again. I owe them a lot of my happiness and sanity.

Post Edited (earthxmarktwo) : 12/21/2009 7:39:09 AM (GMT-7)


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 12/21/2009 7:50 AM (GMT -7)   
Awww.....I am so sorry you have been done this way. Mine started BAD after my first pregnancy (at 20), but after looking back I had the lower back pain and fast heart beat to the point of passing out and other things llong before. My parents were poor, no insurance, not sure if that was the reason I never went to the dr, lets just say I had a rough childhood also. Not raped but molested by a family member, not treated the same as the boys........Anyway, it took a few years and drs to get the fibro dx and I don't argue with that dx. I tried Lyric and it worked for a while, but I gained 30 lbs and the pain kept returning. I stopped that (with dr supervision) . After many years (14), the pain was worse, I developed pain in other joints, some days could not even walk. Once my feet were involved and I went to a podiatrist, he tested for a gene (HLA-B27). Iwas sent to a rhumey, who tried anti NSAIDS (helped elbows so much), DMARDS and steroids. These are making me feel so much better, so he said it was undiff spondylitis because of the sacriolitis and the fact that the meds worked.. The steroids make such a difference, but can't take them all the time, so they are saved for the really bad times. I looked into it have also found others with both conditions, so I would encourage you to find another dr and don't tell them about the rape. They need to keep their mind open and listen to you. Have you been seen by a rhuemy, maybe you can get in without a referal. You seem so mature for your age and I understand about the not going out and partying. I never had friends, never went out, got married at 17 (I loved him but I know it was mainly because I needed out of that house and it was the only way out I thought) Anyway, 25 years later and I am still married to him and it has been a great life. It is a long road to get help, but you can do it. I never seen someone as young as you take such charge over their health. You go girl. Oh, I also was peeing every ten minutes (for years, my husband said I had the overactive bladder) but I stopped thaat after the the meds for inflammation, not sure if it is connected but maybe. I also was not good with people, terribly shy. I got a job as tempory help in a retail store and moved my way up to manager and worked there for 16 years. It was slow at first, but I figured out how to get up in front of people and became an extrovert, LOL. Have you taken naproxen or any otc pain meds and did they help? Maybe if they insist on sending you to counseling you can get someone there behind you to be an advocate. Hang in there, some days will be worse than others and be honest with those stinking drs. Maybe find out if someone on here has a dr in your area, it helps to get one that knows what they are dealing with. So many of them think fibro is in our heads and then some think everything is related to the fibro and forget that there may be other things going on. Good luck to you and pleas stick around, you have come to a good place for support. Virtual friends are wonderful!!!!
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


earthxmarktwo
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/21/2009 8:02 AM (GMT -7)   
Okie, thank you so much for responding! I was tearing up so much I couldn't even finish reading your post at first. But it made me feel so much better to read it. Mum and I are trying to find a rheumatologist to take me to, and I doubt I'll mention the rape, it only causes problems with them. All the doctors I've seen are so set in the belief that I cannot get over it without professional help, but I know I have. I've dealt with it, I've forgiven him, I never really blamed him in the first place. I'm not traumatised by it, I barely even think about it, most of the time I don't even remember it.

One of my friends, he's what would be my boyfriend, but unfortunately he lives in a different country, nearly 2000km away, so it isn't really great. But he's always there for me if I need to talk about anything, and he knows the right things to say, even if sometimes he doesn't understand what I'm feeling. My other two friends are the ones who help me laugh through my tears, but he is the one who will look at me at my worst and tell me I'm beautiful and smart and a great person. It helps so much, even if I can't be with him.

I have come to learn to live with my symptoms, knowing my limits. But I would love to be able to go shopping with Mum and not come home feeling like a bus hit me. Be able to get a job, a license. I've accepted it mostly, but that doesn't mean I can't hope for something better.

I've been searching for years now for a diagnosis, having people want to believe me, but not know what to think except 'lazy teenager' because they can't see it is hard. I want a diagnosis so I can feel more secure in myself, and be able to help people understand a bit of what I feel.

Knowing that someone else out there can relate is such a great feeling, even if I hate knowing it means there's someone out there experiencing the hell I go through. I wouldn't wish that feeling on anyone, not even my worst enemy. Thankyou, so much, for your reply.

My hands hurt now :( All this typing is difficult (I wrote 5000 words earlier for my story haha) I chose a great hobby.

Jenna

SarahBear9708
Regular Member


Date Joined Jun 2009
Total Posts : 286
   Posted 12/21/2009 10:04 AM (GMT -7)   
Hey Jenna,

My name is Sarah and I am 21 years old. I am a sufferer of fibromyalgia and have been for as long as I can remember. Mine started mostly with fatigue though. And it was the same way in school. Everyone thought I was just being lazy, that I just didn't feel like going to school, that I got away with too much, etc. I even lost friends over it. To say my high school years were pretty sucky, would be an understatement. My junior year I was diagnosed with migraines and then anxiety. I started counseling and medication, and these helped some, yet I was still constantly tired. But no doctor ever took me seriously. It wasn't til I went to college that I got that help. I found an amazing dr down here for immediately diagnosed me with Chronic Fatigue Syndrome. It made sense, and I was happy to have a diagnosis, not that it made the condition any better. Not too long later, I started experience more pain in my legs, back, arms, feet, etc. I couldn't imagine what was wrong with me, and my dr was stumped for awhile too. He did tests upon tests and couldn't find anything. I started seeing a chiropractor, and that was when the weird fibromyalgia finally popped up. He gave me some literature on it and told me to talk to my doctor about it. I did just that, and my dr then diagnosed me with fibro. Since then, he has been great. He researches fibro, and is always up on the newest treatments. While I still have alot of problems that aren't fixed with the treatments I'm on/doing, I still feel better then I did, and I am so happy to have finally found a doctor who takes me (and fibro itself) seriously. It's a nice change of pace.

Keep looking and don't give up! Good luck!
~*~Sarah~*~

"You were only given this life because you are strong enough to live it."

Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Celebrex, Buspar, Savella, Lyrica, Requip, Nexium, Symbicort, Compazine, Lunesta.

Supplements: Vitamin B12, Vitamin D, Vitamin C, Ginseng


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 12/21/2009 4:58 PM (GMT -7)   
Jenna,
I real feel for you. My home life was a lot like Okie's. I didn't have running water until I was 16.
I really did walk uphill both ways to school....I went to a 2 room schoolhouse. My Dad was an
achoholic and my Mom was always belittleing me. It was only my other sisters who were perfect.
I wanted to write and everything she found of mine she ripped up.
I started with pain in my toes when I was 7 (I was in 3rd grade). By the time I got to high school
it had my knees and started in my hips. By the time I was 25 it got most of my other joints. I had
times where I could barely walk. I was diagnosed with arthritis. I don't think the knew about fibro
back then. Then came the dr. drugs. Finally when I was 35 I started to go herbal. Unfortunalely I
didn't find the herbals I'm on now until this year. I had the pain when I was touched and no longer
have it. I know since I've been doing Co Q-10 I no longer have heart issues. I've had most major
female surgeries, lypoma tumor removal, cysts, tonsils, heart cath, etc. Since I've been on these
new ones for the last 9 months I've been healthier than I've ever been in the last 20 years.
I know drs don't like to listen and am in the process of changing my primary as he doesn't
even remember what meds he had me on.
My grandaughter is having issues with joints too. She is 13 now and has shown signs since she
was 9. She too had a very rough childhood. Her Mom walked out when she was 2 and then played
custody games with her other sister (different Dad). Both of them were raised by my Son until she
found her sister dead one morning. She died in her sleep. I wonder how much trauma, both
physical and mental plays in us.
Nana Monster

earthxmarktwo
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/21/2009 8:26 PM (GMT -7)   
Thankyou so much to both of you for responding. It really does make me feel a lot better to know I'm not alone. You guys have it even worse than me :( I really did have an easy childhood, with parents who love me.

I am afraid of medication. I don't think I would take it even if I did get the diagnosis. I'd probably be going herbal or something. Then again, nerve blocks sound like a godsend, even if I am deathly afraid of needles. I have to have a tooth pulled soon and I don't know how I'm going to deal with the pain ( I have an extremely low pain threshold, though that makes sense if you take the sensitive to touch thing ) of it.

I wish you guys all the best with whatever you're trying at the moment, drugwise, and life-wise.

I would say, Nana Monster (epic name btw :) ) that stress has a great deal to do with it. Whenever I'm stressed I always feel a thousand times worse. I try to live my life unstressed, but that's a difficult one, isn't it? Whenever I have to worry about what I'm going to do with my life, I go downhill immediately. Or if I've been to another insensitive doctor telling me this is all in my head. It's so hard not to believe them sometimes. To just give in and end up in a straight jacket and soft walls (I don't mind the soft walls, I think they're genius. Amount of bruises I end up with from walking into walls.) But yeah, sometimes I find it so hard to keep strong. I want to find answers, but there are so many things standing in the way of my answers, sometimes I wonder if it's worth it.

A question for you guys, did changing your diet help at all? Like, cutting down on sweets, or certain foods? My mum and I have found that anything with 160b, annatto, I get sick from, so I've cut it out. I was diagnosed as borderline Coeliac when I was younger, but nobody ever explained to us quite what that meant, and I didn't get any better after months of gluten-free dieting.

You're all so strong. My friends say I am, but you guys are the real strong ones. To have gone through such hard things and still come out on top, you're the real heroes. I hope I can find that strength in me one day, if things get worse. Thankyou to you all, big hugs.

Jen :)

earthxmarktwo
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/21/2009 8:32 PM (GMT -7)   
Also, another question, do you guys dream a lot? I dream like two dreams at least every night, sometimes more. Always vivid, usually lots of people dying, though some are good dreams. I just thought it was cause I'm a writer, I have a brilliant imagination, but in the Fibro 101, it might actually be a symptom. Anyone else the same?
Most of my dreams are very strange, like, I'll be shopping post-apocalypse, then be in a hospital that turns into a hotel, then at my old school. It's like that, the surroundings just phase all the time.

Any input would be appreciated.

confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 12/22/2009 7:52 AM (GMT -7)   
I wish I could dream, I never get to the REM sleep. Sometimes I take meds to sleep and have the occasional dream, never remember much of it, but know I dreamed if that makes sense. When I can remember, it is usually tornadoes or fires. I used to have the bad dreams though and wold wake up crying. When i was a kid, I wold have dreams that I was under water, for varioous reasons and wold wake up holding my breathe. I always thought I was crazy. An nana monster, we didn't have running water until the 80's, hence no indoor plumbing. I did ride the bus to school though.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


SarahBear9708
Regular Member


Date Joined Jun 2009
Total Posts : 286
   Posted 12/22/2009 8:23 AM (GMT -7)   
Jen,

Awww, first of all, I just want to tell you that you ARE strong! You have been through and are going through so much and you keep going. That's true strength right there. There is a quote that I like that sums it up: "Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength." See! You're strong!

As for the dreams part....I don't dream much. Once in a while when I take sleeping meds I will dream, but thats about it. Like Okie said, I don't get the REM sleep either...which can be another symptom of fibro. Gotta love it, it's all so complicated!
~*~Sarah~*~

"You were only given this life because you are strong enough to live it."

Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Celebrex, Buspar, Savella, Lyrica, Requip, Nexium, Symbicort, Compazine, Lunesta.

Supplements: Vitamin B12, Vitamin D, Vitamin C, Ginseng


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 12/22/2009 4:00 PM (GMT -7)   
To all of you,
I never used to get into the REM mode as I would wake up 20-40 times a night. I found out that
between the arthritis and fibro the body has pain spasms during sleep and it disturbs the sleep
enough to not be able to get into the REM. Since the "Trio" as I call it, I sleep really good. In fact,
with the first dose of Super Cissus RX I slept all night!!!. I hadn't had that in years. With mixing it
with Malic Acid and Bio-Sil I no longer hurt when touched, I can kneel down (been almost 10 years
for that one), I sleep so much better, my joints don't hurt much (down to the bearable stage or better),
I can do so much more at work. 9 months ago I could barely walk, it felt like my limbs were
going to fall off, I would hardly make it through a workday and energy levels were in the basement.
So glad I found these. These herbals rebuild muscle, tissue and ligaments, rebuild callogen and detox.
If you have a hard time falling asleep I use True Calm (herbal equivelent to flexoril) and
Nite Time Herbs both from NOW brand.
For the bruising Colostrum (bovine breast milk) and Hylaronic Acid (trace minerals) are great.
They rebuild the skin from the inside and it's stronger, thicker and more resiliant.
Nana Monster

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 12/22/2009 7:01 PM (GMT -7)   
Well, I would definately ask your doctor about this possibility, but I do have a question. Have you had your thyroid checked? Some of your symptoms could be thyroid related. But I do think you should talk to your doctor about the possibility of fibromyalgia. I do know how you feel. Keep us posted.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


earthxmarktwo
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/23/2009 12:57 AM (GMT -7)   
Okie, I'm sure one of the tests along the way would have been thyroid related, but I've had so many I'm not entirely sure. I'll have to check next time I'm at the doctor.
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