Fibromyalgia in Young People

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.

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

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.

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!

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.

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.

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.

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!

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