Fibromyalgia in Young People

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DiaDi
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/30/2010 10:28 PM (GMT -7)   
I know for me one of the most difficult things about this disease is that people perceive as too young and healthy looking to actually be in as much pain as I am. They don't take me seriously, and they don't want to give me the certain rights that belong to me as a disabled person. Please share your experiences as a younger person with fibromyalgia. Also, let me and other people following this thread know if there are any support groups for young people with fibromyalgia. It would be greatly appreciated.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/30/2010 11:14 PM (GMT -7)   
Hi DiaDi!

And welcome to our fibro family! It breaks my heart when I hear of young, and often very young people with fibro. One of our moderators, Jeannie, has had fibro as long as she has had memory. And apparently, according to her mother, she has likely had it since birth. So you will find the full gamut of fibro sufferers here.

I do agree that you should be offered the same level of care as anyone else suffering from fibro. The one reason most doctors pull back with young people is they know that pain medication is needed. If they start someone who's young on a fairly strong medication then over time it will have to be increased to keep the same pain control. And there are limits as to how much you can take in one day. Most doctors do feel the dilemma, but some doctors are rude and incompetant with younger people who truly suffer with chronic pain. I hope you can find someone who will treat you with respect. You more than deserve it!

Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


verytired
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/31/2010 5:55 AM (GMT -7)   
i totally agree with you i have had fibro since a very young age and im still young even though i dont feel young and you definetly dont get the same respect. i just get looked at as being lazy or slow its very aggervating but most people just dont understand but i do your not alone

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 5/31/2010 6:35 AM (GMT -7)   
Hi Diadi and verytired and welcome to our family! I am so sorry you are both suffering at such a young age. I was just recently dx'd but believe I have had it for a long time. I started getting migraines and daily headaches at 18, so I know all about being young and in pain. I hope you both can find some support here, keep coming back! Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 5/31/2010 8:22 AM (GMT -7)   
I know for me, I was sick all the time I was young. All kinds of aches and pains. My parents thought I was just looking for attention. Still do I think. My daughter was diagnoses when she was 12.

It is tough when you have school to deal with while you are in pain and so tired. I hope that you get the help you need from school and family.
I struggle with FM,Raynauds Syndrome,gastroparesis, IBS and depression. I trust in God with all things. Been a tough journey and it's not getting any easier but thanks to God and my family I am not alone.


finallyreallycrazy
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/31/2010 7:01 PM (GMT -7)   
According to my mother, I had horrific "growing pains" when I was small. She said there were days when I would lay on the couch or on the bed and cry. Now that I look back, there has always been something.....some ache some pain, somewhere! I wonder, but will never really know. All I know is I was diagnosed at 31 and and facing 2 or 3 back surgeries this summer because the Neurologist deemed me critical. Looks like I am in it for the long haul
New MRI's show I have 3 GOOD vertabrae.  The rest are bulging, compressed, protruding or in one of the three spinal stenosis' in my back.  One stenosis in my neck and two in my lower back.  Fibromyalgia, cfs, degenerative bone disease, osteoporosis, osteoarthritis, HORRIBLE memory problems, panic attacks, depression, and muscle cramps that don't stop.
 
Meds:  Oxycontin 60mg 2x day, Effexor xr 300mg 1xday, Robaxian 3xday, Valium 10mg 4xday, Lortab 10mg 4xday, Phenergan PRN, Folic Acid, B12 and B6
 
 
 
 
 


steppingstone
Regular Member


Date Joined Apr 2010
Total Posts : 366
   Posted 6/1/2010 12:03 AM (GMT -7)   
Diadi, I am very sorry that you are having to go through this at such a young age. I am 51, and just recently diagnosed. However, I can trace my symptoms back to my early childhood. From a very young age, I had sinus problems, UTI"S, and dizziness, and abdominal pains for no apparent reason. I always was troubled with insomnia (my parents just thought that I was not trying hard enough to go to sleep). I was always prone to catching any viral illness that was going around. During adolescence, the headaches began, along with other aches and pains. The fatigue also started, and concentrating in school was difficult. I would frequently beg to stay home. My parents did not know what else to do, so they would often allow this. They did believe me, and sought frequent medical care for me. Of course, they did not know what Fibromyalgia was back then, so our doctor would treat the symptoms, always attributing them to something else. The school was not as understanding, the principal frequently called and argued with my parents. Other children would make remarks and tease me. However, the teachers were fairly understanding because I was a decent student, and I somehow got my make-up work completed. In today's world, this situation would probably not have been allowed to continue, and my parents would probably be in trouble with the law due to my excessive absences.

Despite my problems, I did attend college and graduate school. I earned a Master's Degree. However, this was far from being easy. I quickly learned the hard way to not schedule classes for early in the morning. I did much better with afternoon and evening classes. I also had to constantly take notes in order to keep my mind from wandering, because I often did not feel well. I was still troubled with the headaches, and often had swollen glands. I soon learned that if I was absent more than a couple of times per semester, I would not do well. Therefore, I would force myself to go whether I felt well or not. I was always a night owl, so I would study at night, and then sleep late the next day.

I think that my worst memory from college was of a trip to a very prestigious university in Chicago during my Junior year. They were looking for applicants to their Graduate school for the following year. I had to get up at 5am to get ready to leave. Midway to Chicago, I developed one of the worst headaches that I have ever had. By the time I reached the meeting with the dept. chairperson at the college, I felt not only very fatigued and headachey, but nausea had set in as well. I fell asleep during the meeting. Since there were only 4 students in the meeting, I am sure that it was pretty obvious. The other students told me that I was snoring, and I am not totally sure that they were joking. Needless to say, I did not have the nerve to apply to THAT university.

My problems continued through young adulthood, and I had several bouts with TMJ. The body aches worsened, and became more widespread. Fatigue became worse. The doctors always attributed my problems to something else, or, I think they sometimes believed that it was all in my head. I did not become aware of Fibromyalgia myself until about 11 years ago, and wondered if I possibly had it. I started reading more about it. Finally, a few years ago, I discussed it with my doctor. He mumbled something about it being a "Process of elimination", and referred me to another doctor for testing for something else. I don't think that he believes in Fibro, because it took me several years to convince him to refer me to the pain clinic at our hospital, and then I had to demand it. I now have a different family doctor, (one that does understand Fibro), and a good neurologist at the Pain Clinic. My advice to younger people who might happen to be in this situation is to stand up to their doctors and demand the treatment they need. If they refuse to listen, then find a doctor who will!

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 6/1/2010 4:51 AM (GMT -7)   
Steppingstone - thank you for writing about how it has evolved and impacted your whole life. We are struggling with it with our daughter and the school system. Like you, she does so much better in the afternoon, evening, and night. Unfortunately, high school doesn't match up to her schedule or when she can function. We are still working with her doctor and school, but I feel the battle is far from over. By the time school finishes up in three weeks she will have earned only 2 credits of the 5 - 6 needed her freshman year. She will do work over the summer but will still be behind. I find it beneficial to read how others have managed growing up with this and how they went about getting educated. Thanks,

Kim

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 350
   Posted 6/1/2010 7:30 AM (GMT -7)   
I know that you can choose to remove your daughter from school and instead use internet classes. Basically it's homeschooling but NOT homeschooling. Also, when I was in community college a bunch of professors brought their kids to college courses instead of putting them in the regular school system. I'd never encountered that before but apparently it worked well for the parent and the students. Basically the kid was getting a GED instead of a high school diploma because the professor said that high schools in their area focused too much time and attention on sports/drama/etc. instead of on a real education. Just a couple of ideas for you to consider for your daugher.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


steppingstone
Regular Member


Date Joined Apr 2010
Total Posts : 366
   Posted 6/1/2010 10:23 AM (GMT -7)   
Kim, do they have an Alternative High School where you live? Here, they have one that is separate from the regular high school. It is for children who, for some reason, have been unable to earn their required credits in the regular classroom. Our son has attended it for the past 2 years. He was not sick, but "goofed off" with friends too much in the regular classroom, and did get his work completed. He is also a video game junkie, and not in to homework. I believe that students who have not been able to complete their coursework for physical reasons can also attend. As I remember it, there had to have been at least 3 unsuccessful interventions that had been geared toward helping him succeed in order for hime to qualify to attend. I believe that they used 2 meetings with us that he also attended, communication between parents and teachers through emails and phone calls concerning his missing homework, and I think that they threw in the fact that he had received private counseling sessions with a local psychologist (she had communicated with the school about him).

At this school, they attend only for half-days. He attends from 8-11am everyday, but had the option of attending from noon-3pm. They concentrate on completing 2 subjects at a time, and they get choose what they want to work on from a list of classes that they need for credits. As they complete the credits from each class, they move on another credit that they are needing. There is a low teacher to student ratio, so the students can get the assistance that they need when they need it.

When they are accepted into the school, a contract is made (and written) by the student with the guidance counselor (signed by both) that addresses the goals that they would like to accomplish by attending. They are allowed to participate in the extracurricular activities at the main high school if they choose. They can also go back to taking classes at the main high school at any time. Best of all, if my son is absent for some reason during the morning, he can make up his time on another day during the afternoon session. In this case, the absence is not counted. When he completes all of his credits (which I hope will be at the end of this school year, as he is working on his last credit) he will have earned a regular high school diploma, not a GED. I don't know that it makes much difference these days. I think that they are viewed the same by colleges and prospective employers, but I think that it made his dad and older brother feel better about his attending this school. The grades that he earns are factored into his GPA. I believe that students who have earned credits there have gone on to attend college just as if they had attended the main high school. Without the Alternative School as an option, I believe that my son would have never earned the credits that he needed in order to graduate, and would have dropped out due to sheer frustration. I think that the larger classroom setting stressed him out. He is also not good about asking for help from the teacher when he is in a larger setting.

I just thought that I would share this as a possible option that might be worth exploring further. I really wish that they would have had this option back when I was in high school. I remember being so miserably tired of mornings when I had to get up before 7am to chatch the school bus. The afternoon session would have been so perfect. I wish you the best of luck with your daughter. Please keep us posted!

Chris

@rianna
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 6/2/2010 6:41 AM (GMT -7)   
In my experience of having fibro really hit at 15 and got serious enough to seek a doc at 16 then that turning into nothing because you can't be diagnosed until 20.  Finally at 22 I was diagnosed after finally getting insurance and the other things that ailed me at bay while at my current job, one of my co-workers still doesn't believe me.  Because he is turning 54 and I'm 24 he thinks that my pain isn't severe enough.  He was digging wells for 20 years and screwed up his back enough that now he has an offical letter and handicap sticker.  So because I've not had pain that has caused me to black out he doesn't think I am seriously ill with a chronic pain that makes me feel like I'm 94 instead of 24.  I have to rethink about everything.  I can't think "state fair bungy jump rig?!  Let's go!"  I have to think about how that will affect my hips and legs period.  If I can even get that far in the fair.  He doesn't think to ask why I'm always so tired and in pain.  So I can't tell him that when he comes in to relieve me in the morning me I'm running off adrenaline from making setting up and cooking the breakfast for the guests and am totally ready to go home.  But he's that guy that likes to piss people off and get them to fight with him and make it look like he's the victim in a fight.  I guess why I care if he understands is because he has now gone and whined to the boss that he can't make the cookies for the guests and later told another co-worker that its because I don't "have to" do anything on my shift.  Its not that I don't do my job its that I'm forever different degrees of tired.  Sometimes I'm fine and others I'm so tired I have a hard time breathing and start to breathe heavy.  I do my best with my jobs demands and my fibro, but its harder than he thinks.  Sorry to vent.
Other occupations: heartburn fighter, migraine massage therapist, fibromyalgia trainer, sinus plummer, allergic vet, weather girl and jar of pickles loosener.

Translation: I have heartburn, IBS(undiagnosed), fibromyalgia, migraine-like headaches, sinus issues, allergies to cigarette smoke, perfume and animals, sensitive to weather-body heat issues and possible RA in hands, wrists and feet.
 
Scotland the Brave!


rosebud09
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/29/2010 8:38 PM (GMT -7)   
Hi, I'm 23 and was diagnosed with fibromyalgia two years ago. I was in a car accident when I was 16, which caused nerve damage in my back (which was JUST identified recently, despite who knows how many visits to doctors, specialists, and physical therapists), and have also struggled with depression. Since graduating from college and starting an 8-5 office job, my symptoms have gotten much worse. More people seem to have heard of fibromyalgia now than when I was first diagnosed, but there are very few people in my age group who are navigating life with the same disease. I just started a blog to try and bring people together, and to share news, resources, experiences, and encouragements. Please join and help formulate this new community! http://fibrotwentysomething.blogspot.com/. Hope to see you there, my friends. Sending prayers of strength to you all.

Fru
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/18/2012 12:04 PM (GMT -7)   

I am 19 and was originally diagnosed with Costochondritus at the age of 15, I suffered immensely with pain in my chest for a very long time, I was proscribed sleeping pills and pain relief which I took religiously for over a year, until one day I decided I was 16 and completely dependent on my pills. So I stopped taking them, I still suffered tremendously with pain but by this point it wasn’t just in my chest but my wrists, my arms, my neck, my knees, my hips, my ankles, all over, riddled with clicks and pain, I was then diagnosed with hypermobility, yet it still did not explain my pain! I was referred to Oxford for a specialist I travelled up and was again diagnosed with costochondritus & hypermobility, but this time Fibromyalgia was mentioned, after several tests it was confirmed that I had all 3. Again I was offered sleeping tablets as I couldn’t sleep because of the pain, strong pain relief but refused the lot, my body couldn’t take the strength of all the tablets. I was sent on my way with no follow up whatsoever, I went to my very unhelpful local GP who offered me antidepressants, I tried them and felt lower than ever, I asked about support groups and was told there was no point seeing as I was so young, the groups would be full of 60+ sufferers, trying to establish the best method of walking to the shops, making a cup of tea etc., things I could do!

I have never been told how to deal with my pain, how to make life easier, how it would be if I had children, what to expect, nothing, I take every day as it comes, and hope and pray the pain will go away, I have had 2 months with no pain what so ever, it has been bliss! Until a week ago, when my ankle/foot became inflamed and I have suffered terribly since, I have tried crutches but the pain in my back from using these is too much to bear, I am now hobbling with one crutch as support, in immense pain.

 

I can handle what is happening to me now, but the future terrifies me, what is it like to have had Fibro for such a long time? How do people cope? Has anyone been pregnant with Fibro?

I am a very bubbly young person, living in an elderly person’s body, and I have no idea how to cope.

 

I also hate the fact that because I have an 'invisible illness' people think I am fine, overreacting, 'I am far too young to have anything major wrong with me'. I try to explain to people but no one understands.

 
 

morganaj24
New Member


Date Joined Jul 2012
Total Posts : 9
   Posted 7/18/2012 12:37 PM (GMT -7)   
I can totally relate to so many of these posts! I am 25, and I'm constantly told that look 14 (or 15, if I have makeup on! LOL)

People are always surprised to learn that I have Fibromyalgia. Actually, I went to the doctor today, and the nurse said, "You're awful young to have all these problems!" Thankfully, she meant it in a kind way.

We all come across those people who think it's all in our heads and whatnot, but what matters is that WE know it's real, and making sure we find a good doctor who understands.

It is so hard being young and feeling old. I suffered without a diagnosis for four years before someone finally figured out what was wrong with me. It is hard to live with Fibro, but I have to say that I'm just glad to know that it is a real condition, and that I'm not crazy!
Fibromyalgia, TMJ disorder, Raynaud's

morganaj24
New Member


Date Joined Jul 2012
Total Posts : 9
   Posted 7/18/2012 12:42 PM (GMT -7)   
pksmdrag said...
Steppingstone - thank you for writing about how it has evolved and impacted your whole life. We are struggling with it with our daughter and the school system. Like you, she does so much better in the afternoon, evening, and night. Unfortunately, high school doesn't match up to her schedule or when she can function. We are still working with her doctor and school, but I feel the battle is far from over. By the time school finishes up in three weeks she will have earned only 2 credits of the 5 - 6 needed her freshman year. She will do work over the summer but will still be behind. I find it beneficial to read how others have managed growing up with this and how they went about getting educated. Thanks,

Kim


Kim, I believe my oldest daughter (7) may have Fibro as well, she is beginning to have a lot of the same symptoms that I have, but less intense.

I homeschool both my daughters (younger one age 4) due to my husband's job and traveling a lot, but I have to say that my oldest daughter has done SO much better with schooling at home.

Like your daughter, mine is much better in the afternoon and evenings, and we are able to do her schooling at times of day that she is most rested and in a good mood. ;-) If it's possible for you to do, I highly recommend looking into homeschooling. It has been great for us!

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 7/18/2012 10:54 PM (GMT -7)   
I was dx'd a year after my brother died, so that would be 2008 when I was dx'd and I am so young still taking baby steps too... ok I'm 31 . Anyhow, I have a wonderful primary, whom dx'd me. Not only does he listen, he lets me self prescribe, laughs off my "TOO CLEAN" UA's, understanding too. Even though he's from Europe with a really heavy accent, I love him to death. We've actually became friends, but keep our relationships totally seperate. His wife is a dear sweety too. We go out for coffee off and on.

Guess what? We're a support group of ALL ages. Yes, Karen, I got one rule down but don't let it get to your head. I have a reputation to hold to on forgetting all the rules :p

there is a young adult support group
www.yafmwellness.com

For tweens, TEens
http://www.mdjunction.com/forums/fibromyalgia-teens-discussions/general-support/400432-welcome-to-the-fibromyalgia-teens-support-group
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Fightingmomma25
Regular Member


Date Joined May 2012
Total Posts : 35
   Posted 7/18/2012 11:12 PM (GMT -7)   
I am 26 and have had it for 2 years but I'm sure I had it in high school as I remember being so fatigued I couldn't even go to school and always had some health problem from utis to sharp arm pains that I used to say to make ppl know what it meant was I'd say if I was still able to get growing pains that is what I feel like. Looking back that pain was my beginning stage of fibro!

Anyways I know how it is to look healthy and no one believe you.. Like when I'm struggling with little tasks like in a store and Pete look at me like I'm stoned or assume I'm young I'm probably on some kinda drug.. And I am actually in court right now for custody access and support from my daughters dad and he claims left right and centre look at her she's healthy she looks perfectly ok to me she is lying because she just doesn't want to work, ! So I feel ya Hun...

I guess at least there's a benefit of aging in this case... Lol
Fibromyalgia and chronic fatigue. Effexor , omega 3&6 , magnesium , vit b 6 vit b 12 frolic acid , and percocets for pain
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