New Here but Major question

Discussion in 'Fibromyalgia Main Forum' started by aj99000, Aug 28, 2006.

  1. aj99000

    aj99000 New Member

    Hello my name is Mike. I am a first time poster and visitor to this site. I am glad I have found this site for allot of you are asking questions I always asked myself or felt many of the sleepless nights I have felt. I actually have a couple of questions. Some of you may or may not agree with who I am or understand the questions. But I really have no place else to turn for advice except for the people who know how I feel because they have what I have.

    I am a 22yr old gay guy and I have suffered with CFIDS for 12years now. I was diagnosed with it at age 10. Needless to say I was robbed of much of my childhood. Was home schooled for the remainder of my school years and allowed to attend public school once a year for a small amount of time. But of course I never got to make many friends or attend many of the events. Much of what we all get to go back and remember on I never got to get a chance to build a memory of.

    I got 2 questions really. One relating to sleep and the other relating to love. So please bear with me.

    Sleep question: Right now I am on Benadrill I take 1 pill and it pretty much gives me the rest I need. But I do not want to make a habit of using it. When I do use it I get about 6hours rest. But feel mentally and physically drained when I wake up. When I do not use it I get 2hours of sleep per night. If I am lucky I will get more then that. But I find myself over dreaming. I have these dreams where all my senses work..... Smell, taste, sight, sound, and touch, they all work and seem very real when I dream. Of course once I wake up I am totally drained physically and mentally. Anyone else experience this? Or is it just me? This has been going on for 8years and only seems to get worse.

    Love question: I am not sure if it is a smart idea for me to actually be with someone or not. I have only done long distance relationships because I feel safer and do not want to chance passing what I have to anyone else. I have not seen any hard evidence that says we can or can not pass CFIDS to someone else. In some cases I have read 1 person in the relationship has it but the other does not. Many months to a year later the other person was diagnosed. Maybe it was just a fluke thing. In other cases I have read couples have been together for years and the other person never got it. So it has me very concerned as to if I should chance it or not. Remain single or attempt to actually go out and live my life. Plus being gay I am already labeled with what I could spread to others. I do not need to add another label onto the community in what we can spread now. I am playing it safe. The last thing I want is to give what I have suffered with to someone else. I do not wish it on anyone nor do I ever want to chance it. So my main question for this would be...How are most of you handling the love? I am sure your BFs, GFs, Husbands, and Wife’s are in major support of you. But I am just not sure if I should ever really put this news on someone I might end up with. Don’t know this whole topic really confuses me as to what the future really holds.

    Thanks for listening.
  2. littleleafhopper

    littleleafhopper New Member

    Hi Mike,

    Glad your here. As for sleep, you can find tons of information on these boards! It is a current problem for me also and I am going to have a consultation with a sleep specialist in a couple of weeks. I have also visited for furthur info.

    Regarding your question on partners and disease transmission, I wish that I knew. Your right, it is extremely confusing. My husband has lymphoma and I am very concerned about causing him harm. Since he has a compromised immune system, maintaining caution only seems prudent.

    I am so glad that you brought this topic up and I hope that you will get alot of response by some of the really savvy people on our board. I'm going on 30 years with this bad monkey, but was in the dark for many, many of those.

    I look forward to reading the responses.

    Yours Lil
  3. hob

    hob New Member

    Welcome! I hope you find this place helpful for you. To answer your first question I find that sleep has a lot to do with how I feel. I did the benedryl for quite a while and hated waking feeling drained eventhough I slept. I started using a natural combination valerian root and melatonin. This helps your body relax and get sleepy enough to stay asleep for a while. Also doing some sort of exercise helps me like yoga or swimming.

    As for your second question, you can have a great loving relationship. I give a lot of my success to the fact that I have a reason to live other than myself. Being open and honest about it will be key and the other person will need to be willing to learn about what you deal with this site being a great help. My sweetheart gets on here and asks questions. We have been together for over 6 years and he doesn't show any signs of having our DD. I hope my insight helps. Good luck to you and keep that chin up!!!
  4. kirbycat

    kirbycat New Member

    Hi Mike and welcome.

    Do not worry about benedryl being addictive, it is not. It could become habit forming (just because it works), but there is not a problem with that. Have you tried Melatonin it is very helpful to help you fall asleep, but it doesn't make you stay asleep. There are many treatments for sleeplessness. I, like many here, suffer from insomnia, it goes with the territory.

    As far as love, get it if you can. You are not contagious from CFIDS or fibro. I am sad that you have suffered so long with this problem. So YES, find love!!!It makes you feel better just to have a warm body to lay with, A strong arm to lean on, someone just to talk to. BUT, it takes a strong,giving person to live with this disease. NO WIMPS ALLOWED!! NO self-centered people who can't give of themselves. So choose wisely. I'm sure that given a chance, you will find love.

  5. rockgor

    rockgor Well-Known Member

    Welcome to the board. It's a shame that someone so young has this DD (message board speak for damned disease). You can read my profile by clicking on my name, upper left.

    This is a good place to get info, exchange stories, share jokes, etc. Lots of nice people here.

    Some of our members have vision problems and will appreciate it if you use short paragraphs. Some can't read long paragraphs.

    Click on "Library" above in the purple. Lots of articles you can read. There is also a depression board here. You can discuss that topic on this board or the depression board.

    Some people have had success in improving sleep w/ herbs and supplements. Some people have found tapes/CDs helpful.

    If chronic fatigue syndrome is contagious, it is a different kind of contagion than a cold or flu. My partner and I have been together since l981. He hasn't caught my CFS yet.

    Best of luck to you.
    [This Message was Edited on 08/28/2006]
  6. aj99000

    aj99000 New Member

    Thanks everyone. Yeah hopefully I can find someone to live with forever. The only part I hate is I feel like I will freak the person out or they will bail when they can not handle it. I have been pretty good so far. Allot better then when I was younger and it hit me hard. The most I deal with now is sleeping. Pain portion only kicks in during the winter. And depression has always been a biggy but one I managed to deal with.

    Not sure about anyone else here. Dunno I am hard headed I guess but I refuse to take meds for depression. I saw what they did to my friends. They turned into happy droins vs the friend I once knew. For the longest time I handled my stress by cutting my wrists. I have since stopped and have not done so for a year and a half. Allot has changed in my life so I feel I am on the right path. It's just the matter of finding the right method to get a full sleep and then focusing on a career path and if love happens to fall down on me big bonus there but no rush.

    Thanks everyone for the advice. I will continue to read this post and share more with yall.
  7. mrdad

    mrdad New Member

    I'm real happy "we found you"!! I'm sure you're going to
    be a real asset to this Board.

    I've had CF for about 3 years now so I'm yet a newbie at
    this. Has lots of suspected causes in my background but
    of course nothing "scientific". My sleep problems are
    almost identical to yours in that I get more than adequate
    sleep but is very "unrefreshing" Seems as if it does lit-
    -tle good but I'd be even worse without it!! I take
    Lexapro a (Generic) anti-dpressant as a sleep aid 10mg
    mid-day and 2mg Melatonin before sleepy bye.

    The Lexapro is a "reuptake inhibitor" to stimulate pro-
    duction of Seratonin as I understand it. Anyway, there
    may be other options also including Tylenol PM that is

    I wouldn't be overly concerned about transmitting CFS
    to a Partner as I have not heard of that as an issue.
    Your sexual preferences have no issue with members of
    this Board as we happily accept everyone for who they

    Lots of great people as well as information, support
    AND fun!

    Take care Mike,

    [This Message was Edited on 08/28/2006]
  8. Cromwell

    Cromwell New Member

    Welcome to the board. So sorry you have this so young and for so long.

    There may be something you could use at nighttime that will help both sleep and the FM symptoms. I take 1mg valium before bed and another in two hours if I am not asleep and it does help the muscle spasms of FM.

    Benadryl is relatively harmless but long term use of heavy antihistamines I think can affect the prostate.

    You know, wiht you being gay you may actually stand a better chance to find a really understanding partner than those of us who are hetrosexual. As a counselor I usually found gay people to be far more accepting and supporting of one another than most of my hetro clients. So, be careful, but you are young and have your life ahead of you so go for it, why not. I also feel a warm, loving relationship can really help pain too as the endorphins that are released help with pain.

    Love Anne Cromwell
  9. Marta608

    Marta608 Member


    You ask good questions!

    Sleep is so very important to us. As my CFS doc said, If you can't sleep, you can't heal. As much as I dislike drugs or depending on them in any way I caved and take Restoril. Restoril is pretty potent stuff. I take it during the night when the old monkey brain starts but I only get four or five hours of sleep from it. Still, it helps. I know what you mean about the dreaming! It seems as if our neurotransmitters start firing and stir up our brain. An on switch with no off switch is what I've said.

    As for love, gosh, I wish I had the choice. So many people on here have wonderful relationships that came to them after they got sick so I have hope. I think you're very brave to consider the possibility of infecting someone else with this illness but it's really hard to go it alone. I also think that loving someone is always a good thing - and being loved is almost as good.

  10. Amy143

    Amy143 New Member

    Hi there.. I have been ill for 11 years and I have fibro/cfids... I did not sleep more than 3 hours a night for about 5 years and lost my mind.... finally regaining it..and massive research I realized I needed a precursor to melatonin to help... when you have cfids your adrenals are basically exhausted and you need to replenish nutrients... I do not take anything over the counter like cough medicines, I take nutrition only and it has been a world of good for me... I now sleep a full nights sleep... deep sleep and awake alittle tired, but rested. I take Coenzyme B Complex caps (by Country Life) sold at whole foods Market... 1 before bed or 2 if you want.. and I always feel good.... they are awesome! If that does not seem to work rare... I take grapeseed extract, which is profound for restoring tissue, you name it! Awesome.. and it relaxes you.... You should actually take both every day for your health... your body probably is craving nutrients... especially if you are not sleeping :)

    Ok.. second question: Love. I have dated alot.... and 99% of people have not loved me back and have been too stressful for me, I feel it has been better in my situation to take a step back and learn to deal with the disease and hopefully cure it, but if not, I know that if someone is meant to be in my life they will come to me and not mind that I am ill... most however mind. because they do not understand, why we do not have energy at all.... Just being honest, and I know if I love myself first and overcome things that precipitated my illness, then one day I can be ready for a meaningful healthy relationship...

    Take Care of you~ and try an organic diet like juicing, it really helps with sleep too! You can buy a juicer at target for cheap and then buy fresh veggies and fruits at farmers markets/trader joes/whole foods and eat a super nutritious diet for pennies... :) Amy
  11. kat2002

    kat2002 New Member

    Welcome to the board!

    I don't have any answers to your questions (I have FM), but I do want you to know that you are welcome here.

    Good luck,
  12. CockatooMom

    CockatooMom New Member

    I don't have any answers either, but wanted to welcome you.

    "Ditto" to what everyone else has said.
    Take care! Look forward to hearing more!

    Best wishes,
  13. monkeykat

    monkeykat Member

    First of all, I just want to welcome you. I just posted today for the 1st time in a long time. I was severely ill for the past 4 years. I had been getting ill for a period of 15 years prior. You may want to look at my post today as I share how much recovery I've made in the past 2 years.

    I do want to say that I'm so sorry that you've been ill at such a young age. I'm so sorry that you lost your childhood to this DD.

    Also, I want to let you know that there is ALWAYS hope. DO NOT give up hope that you can find love. I think the first step is not being afraid. The next step is being open to love others and being loved. You never know what good things may come your way. I wish I could give you a big hug...Here's a BIG internet hug coming your way:)

    I had major problems sleeping and did not sleep much for many years and I would wake up feeling worse than when i went to sleep and be in bed until 1pm many days. I could not take traditional meds as I was allergic to everything I tried so tricyclics to sleep were out of the question as I had a severe reaction to them.

    These are some of the things that I have done and still do in order to sleep every night. These things along with stuff I did on my other post helped turn the tide of my illness around...

    S L E E P

    1) No LIGHT POLLUTION 1 hr before bed (eg. Turn off TV, lights & all artificial light sources 1 hour before bed)

    2) Avoid STRESSFUL conversations /EMOTIONAL upset before bed

    3) Do NOT drink CAFFEINE after lunch (watch hidden sources-ex. chocolate)

    4) MEDITATE, PRAY, or LISTEN to positive meditations /scripture verses

    5) Use EAR PLUGS (ex. Mack’s Safe Sound with a noise reduction rating of 29 decibels – follow directions for easy insertion)

    6)Use EYE MASK (I think I purchased mine at Medic for a couple bucks but you can call Medic, CVS or other stores to see if they carry them)

    7) Eat small PROTEIN snack before you go to bed

    8) Turn on WHITE NOISE (air purifier, white noise machine, etc.)

    9) Take 10 DEEP BREATHS (breath in through your nose for a
    count of 3 until lungs completely fill up then purse your lips and let the air out to a count of 6 – puffing air out slowly). Do 10x

    10) Do The KI Method sequences to help sleep and decrease anxiety (ex. Median & Spleen). you are able to print the median sequence for free on line).

    11) Try a reputable brand of herbs, homeopathics or melatonin
    *1-2 VALERIAN ROOT tablets 1 hour before bed.
    *Dr. Overman’s RACE (amount varies) 1 hour before bed (There is a Dr. Overman in Millersburg, Ohio who sells the RACE which has worked even better than valerian root and melatonin for sleeping. LOVE IT!!!)
    *Homeopathic Calming Essence
    *Check with physician and/or pharmacist before taking Melatonin (take as only as much as needed…sometimes only 1mg is needed)

    Keep hope alive...
  14. carebelle

    carebelle New Member

    welcome this is a safe place

    we are all very open we just do not know the answers yet to how we got this DD.
    many think its been as long as we were children so that leads me to think it was not from sex. I have been married for 33 years and my husband does not have it.

    as for love I always vote for Honesty and being married for 33 years its worked for me. Hiding anything from a partner I feel can damage the relationship.

    at 22 you do not need to rush into anything .I am guessing you have not already acted on anything sexually. maybe you still need time to really get to know yourself and learn more about people . Be careful take your time and protect yourself . The advice I gave My children looking for love was this


    work on your talents and character your compassion and understanding .The right person will find you when its time. And look at what you will have to offer a well balanced ,secure adult ,you will find love just don't push to fast take your time.

    welcome again !

  15. jenemc

    jenemc New Member

    I ditto what everybody else says. I want to welcome you. Where do you live? I look forward to gettign to know you and of course everybody else here.

  16. pepper

    pepper New Member

    I have a 22 yr old son named Mike. I can only imagine how difficult this has been for you at such a young age.

    It is important to get as much sleep as you can. Like Marta, my CFS doctor told me that no healing could take place without sleeping so I too caved and went on Restoril 13 yrs ago after 6 months of sleeping 15 min. a night.

    If you can get a decent night's sleep with Melatonin or Valerian, I would certainly go that route first.

    As for your love life, you are young and need to take your time, with or without CFS. But loving and being loved is good for everyone especially those of us who are ill. We need those endorphins!

    There is lots of information on this board regarding diet and supplements. Take advantage of what so many people have learned by experience and you have a very good chance of improving your health as time goes on.

    It is nice to have you here, Mike.
  17. aj99000

    aj99000 New Member

    Hey thank you everyone for the wonderful responses. After I am done typing all this I will work on my profile so it gives you more information. I really wish I found this site years ago. It has been really hard dealing with this on my own.

    As far as sleeping goes I currently do not take any medication innless needed. I get 2hours of sleep per night. I spend the rest of the night tossing and turning and looking at the clock. Or roll out of bed and get onto the computer and read tech news or other odd news sites just to keep my mind from getting bored and seeing if I can ware my eyes out. But when I really need the rest I take 1 to 2 Benadrill which seem to semi work.

    Way back when I was younger Doctors put me on a pain medication called Annsaid. Not sure if I spelled it correctly but I was on it for many years before being removed. Within the last 5years I found out I was allergic to Dairy, Meat, and Canned food products. So I have pretty much become a Semi Vegetarian. I eat allot of Soy products ranging from the milk to the soy burgers, soy cheese, etc. Mixed in the diet plenty of fresh fruit and salads and I am a MAJOR Orange Juice drinker. I can go through 1quart in a day. Which I am sure is not all that healthy to do but it keeps me running and energized not to mention keeps me from catching the small colds and flues that go around the house.

    Well I am going to go finish my Bio. And tonight I will type up a brief history of what I have been going through since I was diagnosed. Sorry for all the long posts I seem to ramble on. Thank you all again so much for your support.

    Peace and Love have a groovy day.
  18. hugs4evry1

    hugs4evry1 New Member

    The others have given you some great advice and I'm glad you wrote back again. You clarified some things for me.

    First of all, I got a strange feeling when you said you didn't want to "make a habit" of taking the pill at bedtime for sleep.

    Then the second thing that struck me was your dreaming....

    Why is this so familiar to me...Because my 20yr old daughter sounds exactly like you and yes, she's a cutter too.

    Look, one thing I know for sure is that you can't "white knuckle" your way through depression. No one can.

    She too hates that she needs pills to help her get through both the day and night time. She feels like she should be "strong enough" to handle everything without needing to take a pill.

    Not sure where it comes from...but...we're all sick here. We all take pills of some kind. I take Effexor and started taking it about 3 years ago. It works for me, but doesn't work for others.

    If you need a pill for depression, then please consider doing what your body needs to work properly. That may be in pill form, or an all natural supplement. Both work in different ways, find one that works for you.

    Those of us with this DD need help with sleeping. We all handle it differently. My doc gave me Trazadone over a year ago and it works wonders for me, every night. I get a good 8 hours and my body desperately needs this.

    My husband takes a natural supplement called Peaceful Nights. We buy it here at the Pro Health Store and it works wonders for him.

    As for relationships....each and every one of us on earth deserves a good, healthy and loving relationship. But please consider loving yourself first before trying to add someone into your life.

    (I know for my daughter, it just isn't time right now, she can barely take care of herself and shouldn't be giving pieces of herself away right now)

    I'm beginning to come to some conclusions about our illnesses. Too many of us are becoming so ill, so early on in our lives that I think the cause(s) will be very basic when they finally find them.

    I think our food is either non-nutritional or contaminated from either pollutants or pesticides. Our foods are filled with chemicals and processes that our bodies can't deal with.

    Our soils are depleted and therefore even our ground foods don't contain the nutrition we need from them. Then they give antibiotics to animals etc....We cook with non-stick cookware that can kill pet birds when overheated, yet we eat our food from these pans daily, repeatedly.

    I honestly think that's why so many of us are sick. I don't think we pass this illness on to others. I think it's just a matter of time for many people.

    And yes, my daughter has Fibro and our doc is just about ready to dx my husband with CFIDS and I have both. But I know I didn't give it to them, it was just bound to happen.

    I'm wondering about your support system? Are your parents in your life right now? Are they loving and supportive? I hope so....

    I'm glad you found us, but sorry you needed to...


    Nancy B.
  19. aj99000

    aj99000 New Member

    Hey thanks for the reply. Yes both my parents are very supportive and have been by my side since the day of the diagnosis. Mom went as far as printing out everything she could find on CFIDS back when I first started getting sick. We got over 3000 pages worth of material. So yes they support me. They also know when I am getting sick again because I can lash out easily and be a jerk at times. But they easily say "Ok Mike were here for ya and well let ya be" And I go mumbble in my room.

    As far as my depression goes. Cutting has not been an issue in along time. And it only happens when my stress levels boil over. Right now I managed to lower my depression and stress through diet and excersise. I finally built myself up to an 8 mile a week walk. And since I am allergic to Dairy, Meat Products, and canned food. It has put me down the path of a much healthier diet.

    Right now my main goals are to continue the remaining 2years of college. Get back into the employment field. And focus on buying my first house. Sure these goals can be accomplished...Some faster then others. But it's nice to have goals and actually accomplish them.

    I am pretty independent right now. The only thing I do not do is drive. Never learned and I got an issue of falling asleep fast in a car once it starts moving. Not to mention really bad motion sickness if I sit anywhere but in the front. This could all be caused by CFIDs or any other issues. But learning to drive is also one of my goals. But as long as I got a Bus, Bike, Legs, and heart. I am AOK!

    Thanks again for your reply. And best of luck to your entire family.
  20. hugs4evry1

    hugs4evry1 New Member

    I'm so glad they're there for you.... so many young folks gay(/or not) don't have that support that we all need and with being sick on top of that...whew! I'm relieved.

    And I'm very proud of you for finding other ways to cope that are so much better for you than cutting. (Sorry, I'm really tired and don't want to say anything wrong at this point)

    Healthy food and exercise? Any ideas how to get my daughter started? Nevermind...if I said it, it wouldn't work anyway right now. She's not in a good place at this moment.

    Again, I'm very happy for you and hope you find a way to get the sleep you need, and the love you deserve.


    Nancy B.

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