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Life Goes On... Right?

Apr 26, 2015 2:30 AM

I have had fibromyalgia for almost four years. I am 15 now and in high school and I can barely function. Because of the pain and exhaustion, we decided that I should be homeschooled. I lost nearly twenty pounds in the span of 3.5 months. I couldn't find the motivation to get out of bed and eat, I still can't. I also failed my first semester and now I may have to go to an alternative high school to make up the credits. I've been back in school since the last week of February and I probably haven't turned in half of my homework assignments since I came back. I have two Fs a D plus (in P.E but that's because I can't DO anything so he has nothing to grade me on) a C and two Bs. In middle school I had straight As AT LEAST once a semester now I can't seem to get an A. (point being is that I am a straight A student) How can I get my will power back? I have motivation I just can't do anything. I feel like I am trapped in my own body and mind. Just wasting away to nothing. Please help

Apr 26, 2015 4:52 AM

I am sorry you have to deal with so much at such a young age. I mourned because I thought I was to young to have my life turned upside down. I was 29 when I became disabled. So this shows that I have nothing to complain about. I have many of the symptoms that you are talking about. Not to get personal, but are you on an anti-depressant like cymbalta to help you deal wiith the pain and it gives you a better mindset to deal with the pain. That may not be the one for you. But there usually is one that works. I am not a drug dealer but doctors who deal with pain will often put their patients on an antidepressant or recommend they see a psychiatrist as well. People often are concerned about goingg to a psychiatrist. They are not the ones you go to talk about what your mom and dad was like. He wants to know your mood and he is a skilled specialist for picking a medicine that deals with your chemistry and medical conditions. That is all he is there for.

It is good you came to this site. It is a wonderful place for encouragement. If you are not a regular, come back as often as you can. That is what I do. I find my medical problems just get me to down to talk to anyone. I just want to be alone and listen to sad music and mourn. Not feel sorry for myself but just sometimes I have to stop ignorring the reality I am in and think about it. I try to be there for others to my detriment. It causes me more pain.So be aware of your limitations.

I wish you the best. i hope you can find a doctor that can help you deal with this. I have heard that some dietary changes can help. I am not talking about losing weight but eatiing certain foods that help reduce inflammation. I recently found out that in India, they are using Turmerac, the spice for inflammation. They say they are using it for your situation. You may want to try it. I Bought mine on amazon. There was one that was the best seller that was very pure. You don't know,. It might work.
I hope today that you can fee; the best that you have felt since having this disease.

Apr 26, 2015 10:35 AM

Silentsufferer09, I'm so sorry you're suffering from fibromyalgia at such a young age. Youre not "nothing," none of us are! We're suffering but I believe we are the strong ones, and something good will come from it.

I'm 53 and its very difficult for me. I have gained experience dealing with medical issues since I was 18. I've had multiple surgeries with multiple diagnoses, and they keep climbing. I developed fibromyalgia while my body was fighting against a tumor (benign paraovarian mass), between 2008 & 2010. They found and removed the tumor but it caused even more problems including the fibro. I was recently was diagnosed with hypothyroidism and Sjogrens. And they're trying to identify the cause of dizziness, mobility issues, and tremors. Like I said, I'm 53 dealing with all this, and its a daily struggle.

Fibromyalgia typically comes along with trauma (like my mass) or other medical issues, rarely by itself (but it does happen). You didn't mention any other health issues. Do you have any others? I'm wondering if you have more than one diagnosis that shares common symptoms, like my fibromyalgia, hypothyroidism, osteoarthritis,DDD, dementia, & Sjogrens. The aching muscles & joints, the fatigue, the cloudy memory/brain function (ie fibro-fog), just to name a few. With each of these med issues fighting against my body and each other, its hard for me to know if its a fibro flare or something else. But because I'm fighting more than one it's double or triple hard sometimes.

I listen to & sing with music, read books & my Bible, watch TV, and play app games. I even go to the park to watch my grandchildren play, when im up to it. I research my issues and use people's ideas in this community to try new ways to get relief; some work and some don't (for me, not everyone). I email and call family & friends to chat a little. And recently we got a new dog (1 1/2 yr old...no potty training needed). These are ways to try and occupy my time and keep my mind from spiraling into an abyss of depression. But because of the dementia and fibro-fog and memory issues I battle with, doing things like household paperwork (bills, medical, bank statements, etc) is a constant struggle for me. I have a room where all this is kept. I worked in medical records and as a bank teller & bookkeeper when I was working; all very meticulous in filing and organization. Unfortunately for me my "office" is a shambles. I try to get motivated and work on organization and cleaning it but I get sidetracked and lose focus, doing something else. Rather than beat myself up for what I didn't accomplish, I tell myself "be proud because you got... (This stack of papers organized or filed, your desk cleaned off, all the files in order, etc)."

I guess, from this lengthy message, what I want you to focus on is: (1) do you have more than one issue causing your fatigue & fog, (2) don't beat yourself up for what you didn't accomplish, but be grateful for what you do (even getting a bath or shower on a bad day), (3) find ways to relax and destress, trying not to focus on your health constantly, (4) turn to family, friends and us for support, (5) don't be afraid to speak up about your needs & feelings, & (6) take time to pamper yourself (hairstyle, nails, shopping, etc). Do what you can when you can, and when you can't, REST.

Its difficult for us older people and we have life experiences dealing with struggles. We don't necessarily know what it's like to be ill so young, but we do understand chronic pain & sickness. You're in my thoughts and prayers! 🙏🌼

Apr 26, 2015 2:44 PM

Silentsufferer09, it really breaks my heart to hear of such young folks suffering with Fibromyalgia and other painful diseases. It's so hard to be 15 but to be 15 and have to deal with this is just adding to the burden. One good thing I can say is that you have come to the right place. You will never be alone here. We all suffer pain from different diseases and some of us have many of the same diseases. It doesn't matter if you have a sting of questions, if you want to vent, rant, rave or just lean on someone, there are MANY of us here for you. I hope that you can get some help in getting your fibro under some sort of control so that you can function better. Perhaps then, you will be more motivated to go and do stuff. Please don't beat yourself up if you really just want to be let alone and not do something because of the pain it may cause... Remember that YOU are the one who knows yourself better than anyone and has to live with that pain and if someone really cares and is a true friend they will understand and not give you grief about it. As far as your studies, I know that you can get yourself back to your wonderful straight A grades. (Even if you end up with B's, it's still better than where you are right now. I think that you could use your school work as a distraction if you practice. Control your breathing, take deep cleansing breaths in through your nose and out through your mouth while you are relaxing a different part of your body on each exhale. This may take some practice. You can use calming music when you practice and it may help you achieve and you wo\

Apr 26, 2015 3:44 PM

Silent sufferer,
Hi!
I'm 14 (will be 15 this summer) and I'm sorry you're also having to deal with this.
When I first got referred to a neurologist, he thought I had Fibromyalgia but now thinks I have CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) which started in my wrist.
I know I have CRPS.
I won't find out "officially" until I see someone at the children's hospital at the end of June.
I lost my ability to write, draw, move, walk (used a cane, then a walker/wheelchair), dance, eat or really have a reason to live.
I went from straight A student to only passing one class.
I recently started Physical Therapy and am passing through immense pain daily.
So far as PE goes, I would drop the class for medical reasons.
I had to drop classes because I couldn't even stand up.
Now I'm walking, but get so tired from even 2 hours at school that I'm doing most things on my own.
I have always been extremely independent, so I hated having a scribe even though it was supposed to be helpful.
I'd say don't worry about grades, there's always an option to go to a charter/online school or get a GED.
Life will go on, but it won't be the same.
It will be tough, but don't give up.
I'm rooting for you!
T

Apr 26, 2015 9:39 PM

I'm rooting & praying for all of you! 🙏🌼

Apr 26, 2015 10:30 PM

Silent sufferer 09 I am so sorry that you and other young people are going thru this at your ages. I am 59 and sometimes I struggle daily with chronic pain. You are a brave and beautiful person. This is not your fault that you have this disease. Has your parents taken you to a children's hospital like Flappsy and Alwayz you may have some other things causing problems. Have you tried hot packs you make them using 2 wash cloths sew up 3 sides fill not too full and sew remaining side then put in microwave for 3 minutes or you can put it in the freezer for a cold pack. I use only the hot pack the cold hurts my joints. I have several, there are several ointments and roll on rubs I have used Tiger balm ,or Walmart brand roll on heat and cold roll on it helps some also. The best thing is to hold tight to your faith God will see you through this. This site was a God's send to me no one really understood what I was going thru. The people on this site soon comes to mean another family for you they understand what you are going thru and can often times give suggestions and tell you things they have gone thru and what they did to help with the pain. Other times if you just need to rant and rave about what you are going thru and you will not be judged for what you say because there has been a time when we all felt like you. You may ask your Mom and Dad to see if yor Dr would send you to a painDr and Neurologist and see if they can help you. You need to try and start eating if you can't manage to eat get your Om to by you Protein shakes ,and muscle mile this will give you the strength to move you need to drink 5 a day. Ice cream what kid doesn't like ice cream anything that will help put some weight on you. Take baby steps to get back on your feet, and as far school you may need to see about home school until you can get your pain under some control where you can concentrate. I will keep you in my prayers. God Bless and good luck. Keep us posted.

May 03, 2015 9:41 PM

I've tried homeschool but I got very depressed (that's when Iost the weight). Since it was online and I didn't have a set schedule, I failed first semester of my ninth grade year. To clarify: Everyday I can use all my appendages but the time I can varies. I don't have the will power to fight for my health or so I can actually pass this year. The only reason I get out of bed is because my mom yells at me and every time I tell her about my pain in the mornings she tells me that I WILL stay at school. And the look of disappointment keeps me there even if I burst into tears because I can't take it. I need a support team and you guys have become that. Thank you. I need help and you guys are the first people to give it.

May 03, 2015 9:51 PM

It really makes a huge difference in life when you can speak to people who understand what you are going through and have felt the pain and exhaustion, etc.... I have to say, when I come onto this app and sign into the community, I look forward to helping others. It literally takes my mind off of my own issues and helps me get through my day. Then, when I have days that I am just overwhelmed, I come here and write my own rant and low and behold, y'all come running to my side and help me through it. This community, I have said many times, has been a Godsend to me. I downloaded it thinking, I'll check it out and if I don't like it, I'll delete it and from the very first day, my very first post, I was welcomed and I will always be grateful that I found all of you. Hang in there Silentsufferer, you know we are all here right by your side. There isn't anything you can't overcome when you have an army of supporters right here with you.

May 04, 2015 1:55 AM

Silent,
I've burst into tears in the hallway, and been sent home by some of my teachers.
I'm quiet, and no one seemed to understand.
I go to an art school, and I remember getting to choose a final photography project.
I did mine based on my experience with chronic pain.
It was terrifying, and I cried during it.
I also met some of my closest friends because they could relate.
There are others, they just may be quiet and hard to meet, like me.
Good luck, as always!
T

May 04, 2015 7:26 AM

Dear Silent, I'm so sorry you're suffering like this. I'm 31 now and was @25 when the worst part started with a terrible intestinal infection where I lost @ 30lbs in a mth. With it came agonizing pain & weakness, brain fog, seizures, etc. not just in my abdomen, but spread through my entire body.
I too didn't want to eat anymore bc the pain and I felt I'd lost everything I'd worked so hard for. I couldnt even finished my Master's in Literacy, let alone teach or make my own meals after being a very independent person. I got to a point where I decided that I would succeed no matter what. I just had to change the way I think, my goals & my outlook of everything. Easier said than done for sure and I do still struggle with these thinhs daily, but as time goes on, it does get easier to handle, it becomes a second nature.
The pain was so bad if I even drank water. I was told to drink Ensure to put on weight, but that's just sugar with no teal nutrional value. If possible, check out Lifetime's Plant Protein Shake Mixes.http://www.amazon.com/gp/aw/s/ref=is_s?k=lifetimes+plant+protein
This will give you the nutrients you need and is easily digestible for a body that is already goin through so much. I mix it in the blender with Almond milk (bc I'm lactose intolerant) and lots of fruits, sometimes extra veggies & juice.

I was also very sick & exhausted not growing up. I didn't have a support system, due to my living situation, so I understand the pain & sense of loss & depression washing over you. I'm so glad that technology has created a wonderful way to find people who understand & can become our support systems, even if you can't leave your bed. You are not alone anymore sweetie and don't ever give up hope because then the disease has won. You have an amazing inner strength deep inside you that is just covered in loss right now. With Chronic Illness, we go through the same stages of grief as when a loved one passes. We have lost a huge part of ourselves when we are overcome by new & overwhelming limitations that turn your world upside down.
Allow yourself to feel, but not to focus too much on the pain & other symptoms. It's hard at first, but try to find new little hobbies that you enjoy. Leave sticky notes with positive sayings that give you a boost of mental & emotional strength around your room, on your notebooks, the bathroom mirror, on you ceiling above your bed (for the days you can't seem to get up)etc.
Also, each day write down all the thinhs you accomplished, no matter how small you may think they are (i.e. I was able to write/type my accomplishments without using dictation/speak-to-text, I finished today's homework) Surround yourself with positivity if possible. I know at your age, there are many freedoms that you may not have yet, which can add to your challenges, but they will make you a stronger person. Just try to make the best of every situation bc negative thoughts/feelings will make the pain & symptoms worse.

Not only is being your age so difficult to begin with, but to have to struggle with so much adds to the daily challenges. I'm sorry that it doesn't seem like you're mom is being supportive. Some parents get frustrated with their inability to fix or make better their child & forget to keep their emotions in check. Others unfortunately don't understand what we are going through, but you did the right thing in coming here to find others who understand & care. We can't control the thoughts and actions of others, but we can control how we react to them. Laugh often ') Smiley daily ;)
Also, if you're on Facebook, stick to positive/informational feeds. For instance, I run a support group mostly on Facebook that is primarily about trying to stay positive, sharing new treatments, natural methods and new research thats out there.
Www.facebook.com/chronicpainsupportgroupofupstateny
Good luck with everything sweetie, sending healing thoughts & gentle hugs your way. Sorry for the long post, I'm not on much & new, so I have a tendency to try to cram all my posts into 1 i guess, lol
Remember, you are a Survivor & you're Not alone. :)

May 04, 2015 7:51 PM

My mother has decided to turn off my phone due to all my absences so I may not be here for a while... It's goodbye guys😕

May 04, 2015 11:54 PM

Silent sufferer 09 I am sorry that your Mother is turning off your phone. Don't get discouraged during this time hopefully it won't be for long. Have you been to a different Dr yet ? We all will be here for you, when you get back. Will keep you in my prayers. DON'T GIVE UP KEEP FIGHTING THE BATTLE. REMEMBER THERE IS A LITE AT THE END OF THE TUNNEL. GOD IS ALWAYS WITH YOU NO MATTER WHAT REMEMBER HE LOVES YOU UNCONDITIONALLY. YOU MATTER TO HIM AND TO ALL OF US AT CHRONIC PAIN. Will keep you in my prayers.

May 05, 2015 12:07 AM

Im so very sorry that you were dealt such horrible cards i thought i was young. I was diagnosed with CRPS at 18. So just know you are not alone others suffer just like you.

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