Posted 8/12/2009 11:57 AM (GMT -6)
Hi There! Welcome to HW! This is a great forum and you will get to meet a lot of people who you probably can relate to...I am usually in the Lupus/Kidney Forums but I saw your post and wanted to comment on it! I am so sorry you have CFS. I can't say I do but I do have really bad fatigue associated with Lupus. I am 21 and I am doing everything I can do to stay a full time student and hold a full time job as an accountant. It is extremly challenging. I am actually going to be starting Chemo on Friday to try and get my Kidneys and Lupus back under control, I am hoping this might also help with my fatigue. You also might try the Lupus forum, I think there are quite a few young people on there that suffer from chronic fatigue.
 
How do you manage school with CFS? Do you have any tips to share? I too am looking for ideas and also people around our age that suffers from these type of conditons and wandering how they cope with them. Look forward to hearing back from you!

Amy

 

21 yrs old, Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Cytoxan, Prednisone, Lupron, Zofran, Lisinopril,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 

Posted 8/17/2009 5:11 PM (GMT -6)
I'm about to begin my senior year of college. I've been ill since 2003 but it wasn't until the end of my first year of college (2007) that I started suffering from CFS. Somehow I've managed to make it through college by taking small course loads and the easiest classes possible (outside of my major). Whenever I get especially sick I contemplate dropping out for the rest of the semester but never actually end up doing it. I really don't know how I've made it through this much college, but what I've been thinking about a lot this summer is what I'm going to do after college. The "real world" isn't like college where I can get away with flexible hours, taking days off when I can't function and I don't have 8 hours a day of class a day (like at a job). In my experience most teachers have been more understanding and flexible than I would imagine bosses would be. It seems like everyone is asking me what I'll be doing after I graduate and it just perpetuates my frustration with not knowing what I can/could be doing next year. Okay now I can't remember what I was responding to on the reply posts (I began this thread) but I think I'd be really cool to have other young people to talk to about stuff like this and there are very few resources for CFS suffers our age. So if you guys are interested lets keep it up (and I'm also going to check out those other forums)


Gabby
Posted 8/18/2009 1:52 AM (GMT -6)

I just realised that when i responded to this post (i was diagnosed at 15yrs) that you all might actually think im too old! I mean, im nearly 30- i forget that so often cos i still feel like im 17 at times! and my students all guessed that im 23.. wow were they wrong! rolleyes

Maz XX


 Co-Moderator Anxiety & Panic- Depression
 
" Why does society view illness as weakness?" (Montell Jordan)
 'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)
-DX:Panic Disorder, Agoraphobia, CFS, Fibromyalgia, Chronic Sinusitis, TMJ, Endometriosis,PCOS, Reactive Arthritis, Anemia, Chemical/Noise/Light sensitivity, Trichotilomania, OCD, SMD. GERD, IBS.
-Meds: Zoloft 150mg. Xanax 4mg. Prescription pain meds/anti inflammatories.
-Multiple surgeries- I bear the scars of my poor physical health.
-Age:29. AP first DX @ 10. Fibro etc DX @14.
 
 

Post Edited (Mazfire) : 8/21/2009 2:14:32 AM (GMT-6)

Posted 8/20/2009 11:06 PM (GMT -6)
Mazfire...we are happy to have you :)
Posted 8/25/2009 5:38 AM (GMT -6)
It was so great to read all your replies. I have developed cfs in the past year after having mono. I am trying to adjust and have found it very hard because so few people my age (26) seem to understand. I decided to start a blog about my experience in the hope that other young adults with chronic illness can come together and help each other. Please subscribe and comment on my blog. I will post new topics everyday.

http://hopehelphealth.blogspot.com/
Posted 9/23/2009 8:00 PM (GMT -6)
Hello there!  I wanted you to know, you are not alone!  I'm 23, female, and I too struggle with CFIDS.
 
I've just come back from another disappointing doctor's appointment, and I'm just as desperate as you are to talk to other 20-somethings about this disease.  I've been sickly for most of my life, but a bout of thyroiditis about 2 1/2 years ago really sent my health spiralling.  I've now dropped out of college 3 times because I was just too exhausted and sick to attend my classes.  I basically feel like I have the flu every single day.  I sleep either 10-20 hours or not at all.  I feel sick and stiff in the morning and exhausted all day.  I'm still in the "ruling out" phase of diagnosis-- we're going to immunologists and rheumatologists and endocronologists trying to find some sort of answer and, ultimately, a treatment plan... but so far, nothing.  I'm becoming surer and surer that what I have is CFIDS... and I really don't know how to deal with that.
 
How do people work with this disease?  I'm working part-time and barely getting to work.  How do people get through school with this disease?  I have 12 credits left to graduate (4 classes), but it might as well be 1200.  I feel discouraged, which I'm sure is not what you want to hear, but I really feel at a loss.  I feel like I'm supposed to have all this energy since your 20s are for establishing your career, reaching personal goals, making friends and meeting people... aren't they? 
 
Sorry, this post got whiny.  I guess I'm just trying to say I relate.  There seem to be special issues that come with a combination of youth and CFIDS.  How do you all cope?
Posted 10/6/2009 1:03 PM (GMT -6)
My son is only 16 and we are now supposing he has CFS.    Up until he got sick, he was in amazing shape, a highly trained athlete who was working out every day.    He go a really nasty flu-like virus late last Spring, which knocked him out for about 11 days (he missed a lot of school).   it wasn't EBV/MONO or CMV, as he has now been tested for everything under the sun.    Immediatly after he recovered from his illness, he began noticing some muscle weakness in his arms (just slightly).   He ignored this because it wasn't too significant at that point.  Then he realized it was more of a muscle fatigue and was gradually gettting worse.    He became ill again by July and noticed the same muscle fatigue in his legs, in addition to his arms.   Eventually it became really debilitating andhe had to quit excercising all together.    Eventually this escalated to overall fatigue.   He came down with a horrible case of strep in September, just before school started, which had him in bed for about 12 days.   He has recovered from the strep, butthe underlying severe fatigue and muscle fatigue has persisited, along with several other symptoms now which are blured vision and concentration and memory problems.   We are trying to help him to hang in there this semester (his very important junior year) and not drop out of school.   The problem is, if he stays, he may completely screw up his good GPA because he is having a hard time functioning.   If he drops out, he may get worse and just spiral....    We are so worried about him, and his doctors don't have any idea how to help him.   They are just caling this a "post-viral syndrome" which they hope will just go away on his own.   In the meantime, his life is falling apart and he is becomeing angry and frustrated, not just because he can no longer participate in any sports, or any physical activities (because it kills him to do so) but also, now, because he can't even think straight.   He can't even concentrate enough to play video games, which is pretty pathetic :-)     My husband, who is a physician, whose specialty is not related to treating these types of illnesses, thinks CFS is definitely autoimmune and has wondered about the benefit of a Prednisone taper.  Has anyone else out these had success with steriod treatment?  Thanks so much, in advance.
Posted 10/6/2009 9:02 PM (GMT -6)
I'm in college and been having issues with fatigue for over a year now. I don't know if it's CFS, Fibro, adrenal fatigue, or just a result of a vitamin D deficiency. But I need 9 hours of sleep at night and naps every day. And I still don't feel well-rested. I'm lucky that my classes are fairly easy and don't require too much work, and and I don't need a job. But I have no idea how I'm going to handle "real life." And my parents aren't helpful either--they just think the fatigue is in my head. shakehead
Female, Age 21
Remicade, Colazal, VSL #3 DS, Vitamin D Rx, Calcium, Prozac, Turmeric, Biotin, Zyrtec

Posted 10/18/2009 6:10 AM (GMT -6)
What a great post we have here, I definitely needed to hear the different stories of what people are going through, because I have been having a rough time also. I'm 25, and I was diagnosed with EBV about a year or more ago...the doctor reported that the virus was common and nothing to be concerned about. Then about 3 months later I started getting symptoms in my body, and even in my skin, but I ignored it. Then 6 months later, I noticed that I was sleeping more, had loss of energy, and was starting to get irritating pains in my body. To make a long story short, I suffer from light headedness, tiredness, internal pains and aches, sore throat, muscle fatigue, and more, and the doctors are doing little to help. I've been testing myself for other possible causes, but so far, all has pointed to my EBV diagnosis. This virus is something else, I can't believe there is no real medicine regiment to try and deal with it.

I did make it through college and I'm working a full time job. I am greatly blessed, and trying to cope with what I'm going through. B-vitamins help, try not smoking, take vitamins everyday and eat healthy. If you are doing all that, and still you can hardly function then see if the doctor can perscribe something or look for natural vitamins/mineral/ medicine. I wish everyone the best, I know it is hell to be young and in the most vital time of your life, and to face such chronic health problems.

If anyone wants to email with me, you can find me on yahoo. My screen is jay23kean. I would really like to chat with Yosemite Sam, because I feel that I have the same symptoms as your son, and so I would like to know what he has, if your family ever finds out. Or, you might want to have him tested again for EBV, because the way his nervous system and muscle systems are being affected, I went through the same thing. Well, hopefully I can serve as good news, that yeah...I was able to get through it....but I did not like when my lymph nodes became inflammed...I think when that happened, I was demonstrating signs of mono. But my doctors refused to test for it, even though I had EBV....I just don't understand doctors sometimes.
Posted 10/18/2009 2:51 PM (GMT -6)
I'm a 17 year old male who used to have CFS (or psuedo-CFS). I used to be on a boatload of daily meds for headaches, and they just made me really flat and tired 24/7. Due to that, doctors assured me that the meds I'm on USUALLY don't do this and it must be something wrong with me. After being on tons of meds for years, I recently weened off all but one new one and I feel like a different person. If anything, it's hard to sleep sometimes.
Dx: Supratrochlear nerve obstruction/compression & severe migraine.

Rx: Opana ER, Transdermal Scopolamine

PRN: Zofran, Opana IR, Actiq

Posted 10/27/2009 2:17 AM (GMT -6)
All I can say is W0W! I am 20 and I have fybromyalgia and lovly CF. You all inspire me so much!! I had to drop out of school for this year due to my new medical issues being at a constiant flare. Hearing from college students pushing through...W0W. Good for you guys you give me such hope!
Posted 10/29/2009 11:56 PM (GMT -6)
I went through all of college with chronic fatigue, unfortunately, i was not diagnosised with the condition until my last year. I'm now in my 30's and have battled with it for nearly 15 years. Getting through college was not easy, and it continues to be a struggle. In retrospect I've managed fairly well, having graduated with dual degrees and remained employed and in a good career. It takes an emotional toll and I would have definitely wanted support of others going through this at the time. It's never an easy time to contract this illness, but contracting it young is especially difficult. It's really not in the realm of understanding of your peers at the time. I've tried as much as possible through out my illness to not let it limit me and I've traveled extensively, learned new hobbies and remained relatively active (although this can be the most challenging aspect). If you're posting on this board looking for support then you're well ahead of where I was in college without a clue as to what was making me feel so bad. Reaching out for resources and support is in my opinion the best step you can take.
Posted 10/30/2009 11:39 AM (GMT -6)
Im usually on the Fibro forum.. and yes we share very similar symtpoms. Im 18 and in my freshman year of college. It has been a difficult task managing the way I feel vs. school. I have missed classes and missed tests and everything else.. but I just keep doing my best so in the end I know I tried.. and I am passing so, thats good.

Its hard to manage college and any kind of illness... so dont give up and know that you are NOT alone! If you ever want to talk you can email me... I would be glad to listen and help if I can.

Take Care,
Christi
Lyrica (15 months-quit Feb. 09), Paxil (10 months-quit 6-4-09), Cymbalta 6-6-09(horrible effects), Rozerem, Melatonin, Currently taking: Prozac 40mg (July 09), Trazadone 50mg (Sept 09)-Fibromyalgia, Depression, Anxiety Disorder, Panic Disorder, Eating Disorder, ADHD, Dysthymic Disorder
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
   

Posted 10/31/2009 11:24 AM (GMT -6)
For any CFS/FM sufferer: find an ND (Naturopath) or DO (Osteopath) who does soft tissue therapy at least 45% of his time and be rid of all your aches and restless legs; it's gentle and drug-free. yeah
Posted 12/22/2009 9:41 PM (GMT -6)
I actually have not been officially diagnosed with CFS, but for the past 4 years I have been searching for the cause of my fatigue (other things in my health keep popping up that make the doctors believe that there is something else going on). For the most part, I face the same symptoms as someone with CFS (I very well may have it). I have one last semester left at college, but I began being unhealthy when I was 15 (beginning in 2003 I had difficulty walking and terrible head pain following meningitis and pneumonia) so I too wish I could message Yosemite Sam because I faced the same decisions regarding high school/gpa/etc.. This is probably a really unhealthy thing to post, but does anyone else use stimulants to get a few hours of minimal energy each day?
Posted 12/23/2009 3:43 PM (GMT -6)
Dear "Original8": CFS covers a multitude of problems and often is crossed with FM (fibromyalgia). In my opinion, approaching it with stimulants is wrong and will do no good. Speak with a younger Internal Medicine MD and ask about Lyrica as a partial approach; if you also have restless legs at night, Neurontin at night (300mg) will help both the legs and your sleep. This is not a cure. A Naturopath (ND) or Osteopath (DO) who does Soft Tissue Therapy can help you greatly, but expect it to tak up to 18 months of treatment, approximately once a month. Be wary about even coffee, tea. No question meats are also a problem.
Posted 2/11/2016 10:57 AM (GMT -6)
Hey guys,

I have been slowly getting chronic fatigue as a permanent part of my life for over the past 5 years. It started when I was 20 but I only really had a few odd symptoms like getting sick once a month and getting really severe sugar lows which may have lowered my immune system a lot at the time. Then a few years later I got really bad CFS for a total of 5 or 6 months and it was the worst thing ever. Thankfully I finished my BA but I worked full time and it was near impossible. I usually worked out 5 days a week but that had to stop because it only made things worse. Oddly enough i started taking vitamin C and it went away. Then about a a year later it came back full fledged after a deep tissue massage (***?) and its been back ever since (at least I think). I started seeing a homeopathic doctor who placed me on adrenal supplements and another one that I cannot remember and it has helped greatly. I don't have my brain fog anymore which was honestly the worst part about the whole thing but I still get exhausted pretty quickly after a day or even half a day where I need to just lie down and zone out. I really don't want to be on these supplements forever because I just hate taking things in general except for vitamins. My entirely life has changed and so has my personality in good and bad ways. I am back in school to become a nurse and will need omega prayers because this is going to be one hell of a ride, but its my dream so I can't simply pass it up. I really hope that you guys find peace and comfort knowing that things CAN change and get better. scool
Posted 3/22/2016 8:36 PM (GMT -6)
26 year old male have had terrible fatigue low energy and insomnia since 23 just found out I have stage 3 add real fatigue causing all this

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