New To The Board......looking for answers

Discussion in 'Fibromyalgia Main Forum' started by ReallyTired, Mar 23, 2003.

  1. ReallyTired

    ReallyTired New Member

    Hi everybody,

    I have been diagnosed with CFIDS, well sort of! I'm a 47 year old young man, who was on top of the world (great career, happy, great relationships ....etc.)....and now most of that is gone. I've been suffering for about 4 years now and my condition is progressively getting worse. I am still in denial and I'm continually striving to find a cure for myself. My symptoms are pretty consistent with the CFIDS description; however, I do not get sore throats (Are there anybody else like me?). One of my doctors (Neuropsychologist), well know in this area, pretty much discounted this type of diagnosis because of that, while other doctors (mostly Rheumatologists) who feel I still fit this type of illness. I’ve also been getting some contradicting diagnosis for other disorders. My blood tests are for the most part normal and suggest that I’m healthy and doing well. Blood pressure is real good but the truth of the matter is I am incredibly sick and not sure what to do anymore. I am getting so frustrated that I can’t begin to tell you (I’m sure all of you can relate!). I have two young boys 16 and 11, who desperately need a well and functional father, lucky for me, my wife is a dear angel who has sacrificed and supported me throughout this ordeal. I am looking for answers !!!…….are there any? I just recently received the Annual CFS & FM Treatment Guide from Immunesupport and it has given me some encouragement but has anybody tried any of these treatment protocols? …..and if so, which one’s are helping? I want my life back as I’m sure most of you do too. I live in southern California, can anybody recommend a good doctor who specializes in this illness? Thank you for all your help………
  2. judywhit

    judywhit New Member

    I am sad for you. I wish you did not have to deal with this. I am in my 40's also with two beautiful daughters.. I feel at times like I am a failure to them and to my dear husband. I have little energy and I grieve for my old life. There are no easy answers to this DD. I started suffering with the muscle pain about 5 years ago. It got worse and then came the fatigue. The things I take are supplements, pain meds and a sleep aid. My biggest problem is lack of sleep. For some reason sleep problems plague many of us with fms/cfs- my body will not heal because of the lack of sleep. My suggestion for you is to get on a good supplement. Fatiqued to fantastic is a good one. Just plug that into a search engine and you will find this product. I buy this at iherb on the web. I take a good B vitamin. also subligual b12. Magnesuim is also essential with this DD.
    I try to be as active as I can. I ride horses with hubby and work 3hrs a day. 3 hrs is all I can handle for now. I am thankful for a good boss that understands. I have a close walk with God and He is always walking by my side. You have come to a fine forum of wonderful people who are never to busy nor tired to answer your questions. It sounds as if you have a wonderful support group with your lovely wife and kids. Do not be to hard on yourself...it does get better. Good luck in finding a doctor I am in the beautiful state of washington so can't help you with a doc.
    Be blessed,
    Judy
  3. lumediluna

    lumediluna New Member

    Welcome Mr. tired to this support board! I believe you will find some good stuff on this board and you will get some good support here too.

    One tip/thing that helped me on this site is the search messages above....just type in something that you want to research, like say herbs, and it will pull up posts on your search.
    Anyway, where are you located in S. CA? I know 2 decent docs out here where I am, in Ventura Co. or West Hills area.
    Some people on this site have some good docs in their area too.

    The thing about this cf, is different meds and herbs, supplements work and sometimes they don't because we are all so diff. I have tried so many things and they worked, then they didn't and some just didn't work. Anyway, I have fm for about 6 years and tried diff things from anti-depressants to pain meds and some herbs, supplements and creams for pains in the back.

    I haven't tried the treatment protocols mentioned, I need to get the guide and check it out :) From my research recently, I am trying to do the natural way....I will give it a go. As you stated, you just want your life back and I do too. I will do almost ANYTHING to feel better. I have recently started with an herbal iron liquid called floradix that I get from Whole Foods. I have noticed it helps with the energy loss - I noticed a diff in about 2 days. The meds I take sometimes are Soma (muscle relaxer) and Lortab (vicodin) for pain when I need it. Ambien is good for GOOD sleep too.
    It is going to be like a trial an error type of thing to figure out what works for you and it probably will be a concoction of things that work for diff symptoms - and the hardest part I think is finding a GOOD doctor that will help you and really listen to you. That is so important - if you don't like a doc, go to another one if you can - you really need the support.

    I understand completely how you feel about caring for your boys. I have 2 children and I get so bummed when I can't do something with them some days - it can make me really sad and frustrated. Glad to hear your sweet wife is there for you! For me, knowing that my husband is totally supportive means sooooo much to me, I don't know what I would do without him :)
    Well Mr. tired, we are here for you, just vent, for support, for information and all that good stuff :)
    I wish you much success on finding what works for you and finding a good doc! Take care!
  4. ReallyTired

    ReallyTired New Member

    Thank you Judy for your thoughtful message. I will give that vitamin a try but find that I am so sensitive to suppliments now, and some make me much worse. I appreciate your information and wish you all the best, health and happiness. God bless you and yours, Art
  5. ReallyTired

    ReallyTired New Member

    HI, I really appreciate you getting back to me. I live in Oceanside, California (just 40 miles north of San Diego). I grew up in Santa Barbara and was raised on the beach and surf.

    Looks like I will be making some new friends here.

    Thanks again,

    Now you can light my icon on fire! (Brings back some goofy times....LOL).
  6. lumediluna

    lumediluna New Member

    Hi Mr. Tired,

    I wish I did, but I don't. I am almost positive there are some people on this board that have good docs down there. Maybe you can do a search for the docs in CA.
    I was checking this board to see how you are doing to see of I could help with a doc. Glad to hear you have some good memories and a good sense of humor about the icon and fire lol :)
    People think it is really bizzar that a girl can find humor in it, but hey, I have some awesome brothers that know how to have fun and let loose, and I admit it is a good laugh - thank God for my brother's. My brother just moved from SB to Ventura. Do you get chances to go back to visit SB? It is a good get away up there, so nice. Anyway, have a good day Mr. Tired! - hope you get a good doc soon!
  7. pam_d

    pam_d New Member

    I lived on the CA central coast (S. Cruz) and miss the beach & temperate weather--I'm in Kansas now! So sorry you are feeling the natural frustration these illnesses cause, and the discouragement that we all feel---they say CFS & FM aren't progressive, but anybody who's suffering would say they certainly FEEL progressive, and if the underlying factors aren't addressed, probably will get worse. I'm always on a mission to peel back the layers of this (I have FM) to try to find the underlying issues that seem to be driving it for me. I recently found an allergist/immunologist here who specializes in FM/CFS, and learned I had both a higher level of mercury than normal in my body, plus very serious food allergies I never had a clue I had! I did not present as someone with food allergies, I didn't have stomach pain or bowel issues, so it never even occured to me that my FM pain, tingling, lack of energy could have anything to do with food allergies, or "leaky gut syndrome" (do a search on LGS----there's a lot to learn!). But I found out my milk & gluten allergies, primarily, were WAY out of control. I'm far from cured, not by a long shot, but sticking to a strict diet & taking digestive enzymes & probiotics is helping-----have more energy, less pain. You might look into this, also systemic yeast infections (a good allergist tests for all this) just to see if any of these things are problems----if nothing else, you'll eliminate things, so you can focus on other areas.

    Check around your area for CFS/FM support groups (do a web search & then e-mail or phone) they are a great way to locate good area doctors (and find out which ones are a waste of time & $$). I wish you luck, I'm glad you found this site, there's so much you can learn here; everyone's collective experience, and varied choices for treatment will give you some hope & ideas of how to cope day-to-day. We are a good bunch here--keep us posted on how it's going & we will be hoping for the best for you & your family (sounds like you have good family support---that's a big part of the battle!)

    Welcome Hugs,
    Pam
  8. sare12

    sare12 New Member

    ...really tired!I know exactly how you are feeling!I am 30 years old and till the last 15 months,had a good career,social life,family life and future!I was diagnosed last June with CFS and have had it 15 months.My life has completely changed,and I soooo miss the life I used to have.

    I am struggling still to come to terms with it and have all the symptoms that go with CFS (including recurrent sore throats!).I myself,as is everyone here, am looking for anything that will help.I don't know any drs as I live in UK,but I hope you find one soon.I also am lucky like you too have a wonderful hubby and family/friends.

    Hope things go well,and am glad you have found such a great website.Everyone is so supportive,it makes a huge difference!If you find any answers,I would love to hear...
    Bye for now,Sarah.

  9. sare12

    sare12 New Member

    ...really tired!I know exactly how you are feeling!I am 30 years old and till the last 15 months,had a good career,social life,family life and future!I was diagnosed last June with CFS and have had it 15 months.My life has completely changed,and I soooo miss the life I used to have.

    I am struggling still to come to terms with it and have all the symptoms that go with CFS (including recurrent sore throats!).I myself,as is everyone here, am looking for anything that will help.I don't know any drs as I live in UK,but I hope you find one soon.I also am lucky like you too have a wonderful hubby and family/friends.

    Hope things go well,and am glad you have found such a great website.Everyone is so supportive,it makes a huge difference!If you find any answers,I would love to hear...
    Bye for now,Sarah.

  10. Shirl

    Shirl New Member

    Hello, welcome to our world of the painful and the tired.

    I have Fibromyalgia, not CFS, but do get the fatigue that you all get. Mine only lasts a few days at a time, so I can't really relate to you feeling this way all the time, a few days at a time is more than enough for me.
    I always read any post when someone says they have found some relief from the fatigue, it stops me dead in my tracks, sometimes I think it is worst than the pain that we live with.

    Please use all the research that is available on this site, you may find something that will help you.

    I have truly gotten more help here than from any doctor. I have had Fibro for more than 20 years now.

    Really just stopped to welcome you, and hope you stay with us, I know you will get some help here.

    Shalom, Shirl
  11. layinglow

    layinglow New Member

    I am living a very similar life. I am 45, was in great health or so I thought, married 26 years, with a great family, and then the bottom dropped out. My life has changed completely. I have a Dx of Fibro and CFIDS--and wanted to let you know I do not suffer from chronic sore throats. Mostly my CFIDS symptoms are total and utter exhaustion, cognitive and memory difficulties, and malaise, a feeling of having a bad case of the flu every day.

    I have been trying every protocol I have found---and will continue to do so til I take my last breath---I want my life back, just as all do. I have found some that worked---and some that have not. I have made some progress, and now realize that treatments need to be individualized. I have many of my FMS symptoms under control, and now concentrating on the exhaustion and other CFIDS issues.

    Thank goodness for those of us that have supportive spouses!
    Keep on keeping on---and don't quit looking for answers.
    The biggest blessing I had--was finding a Doctor that specializes in FMS/CFIDS and MCS. It has made a world of difference compared to where I started. I see a D.O., so that I get integrated treatment with conventional meds, and supplements, vitamins, and alternative care.

    Welcome to the Board, and Best wishes in your Quest for Health--
    LL
  12. Dustie

    Dustie New Member

    to the board. You will find so much help here with so many wonderful people. There doesn't seem to be a question that they can't answer. I have FM, not CFS so can't relate on the extreme fatigue but can on the loss of the old life. It takes time to find a new one...a lot of struggle but having a terrific support system there at home is such a blessing that it seems not many out there have. I do and I know how wonderful a kind and caring ear can be.

    In your later post about supplements you said that some make you worse. That makes me wonder if maybe those are the ones you should go with. My Doc explained that when supplements are working, at first you go through a detox of sorts, ridding the body of toxins, and it does make you feel worse but then you get better. It doesn't happen overnight...so be patient. There are lots of people on this board who have had wonderful results with supplements (me included) and you just have to get the right combo. I don't get mine from here so am hesitant to name brands but I know people will help you in that area.

    Hope you find a doctor that can really help and LISTEN to you. All the best..

    Dustie