New to diagnosis CFS

Discussion in 'Fibromyalgia Main Forum' started by jlbean10, Oct 10, 2008.

  1. jlbean10

    jlbean10 New Member

    HI, Just wondering what others are going thru? I was told for the 2nd time I have this..FM/CFS? Does look good, feel good...frusterated.
  2. 5hei1a

    5hei1a New Member

    Hi JL

    I'm sorry you have FM/CFS. I understand that you are frustrated. It is a constant emotion with this DD.

    If you haven't already...please read the post on "Explaining FM/CFS" It has some excellently written insights on what it means to be us.

    As for myself. I am 44 years old. I have four beautiful children - two daughters ages 24 and 21; and two sons ages 18 and 17. I am married to a wonderful man who has recently gone through his own trauma and became disabled. I have two gorgeous granddaughters ages 3 and 1. And I used to be THE caretaker, hand holder, strong one, nurturer, giver, lover, glue that held us all together....

    Now, I'm just taking up space in this family of mine. I do not have the physical ability or mental clarity to do much of anything that I used to do. I do still manage to go to work, but I'm not sure how long I can hold up.

    You never know one day to the next how bad it will be. Will you hurt so bad that you can't breathe...or will you be so exhausted that you just can't even get out of bed...or both. Will you be able to put a coherent thought together? Will you manage to not cry today.

    Frustrated, yes. Mad, yes. Lonely, yes. Afraid, yes. Hopeless, no. As long as we continue to hope...we can survive this DD. You must learn that you have to put your needs first in line. You must take care of yourself so that you can give what you can to your family and life.

    Soft hugs,
    S
  3. findmind

    findmind New Member

    Hi, newie, and big welcome hugs!

    you've come to the right place...lots of good info here.

    I'd suggest(for hope!) you read the new PhoenixRising.org newsletter just put out yesterday. He tells how the new Whittemore Peterson Institute in Reno, NV says within one year they'll have a diagnostic test (not just your dr. dumping you into the "wastebasket" category the CDC wants you to have), and about the founder, Dr. Mikovits, and her daughter who is ill with CFIDS/ME.

    If you are working, read louiesgirl2's posts (use Search above) about disability, and then Search SSDI again.

    Read all you can here: use the library on the purple tabs above.

    Then, post with specific questions, so those with experience in that area can respond, ok?

    Again, welcome!!!

    findmind

  4. Janalynn

    Janalynn New Member

    Hello there and welcome!
    Just wondering, were you diagnosed with both CFS AND Fibromyalgia? Some doctors believe they are one in the same, they are not - or I do not believe they are, although the very often accompany each other.

    What are your worst symptoms? Fatigue, pain?

    What does "does look good, feel good" mean? Sorry, I'm having comprehension problems tonight. =)

    Frustration is one of many emotions we all deal with at one time or another - quite often actually and for many reasons. Lack of understanding from others, lack of understanding what is going on with our own bodies, frustrated with our limitations, frustrated with the 'no notice' sometimes with feeling like crap. The list goes on and on. Eventually you do start to deal with that.

    For me personally, the emotional part of having Fibro was almost just as rough as the physical part. We who suffer with these DD are very strong people - we sometimes don't feel like it, but ya know, we really are.

    Tell us how YOU feel - what are you dealing with? do you have a support system? Good doctors? family? friends who help you through the tough times?

    There is a wealth of knowledge here on these boards along with wonderful support, people who have been and are exactly where you are. Take great comfort in the fact that you are not alone and never will be.

    Learning to listen to your body, to put yourself first is key. It sounds easier than it is, because most of us grow up learning to take care of other's needs first. You cannot do that with this DD. You will end up being no good to anyone. I use the example of the flight attendants on the airplanes who tell you to put your oxygen mask on first so that you can help the person next to you.
    Put your oxygen mask on first.

    Ask questions - and also answer other people's posts when you can. I'm sure you have experience that would be helpful to others. We all rely on each other.

    Look forward to learning more about you!!
    Janalynn
  5. Mom2SixBoys

    Mom2SixBoys New Member

    I was just diagnosed last week! It is very overwhelming! I am doing as much research and gathering as much info as possible so I can help my Dr. help me. I am only 39 and this illness started 2 years ago! I have six boys ages 6 to 21, a wondeful husband and a great life and I am VERY angry! My 7 year old is Autistic and was just diagnosed 2 years ago so all of this feels like too much! Hopefully I can find friends and support here because I feel very lost and lonely!
  6. Mom2SixBoys

    Mom2SixBoys New Member

    I went to a Rheumatologist to be checked for FM but without even touching me he diagnosed me with CFS and CPS after reviewing my questionaire and asking me questions. It turns out I have all 8 of the symptoms used to diagnose CFS and all but three of the other possible symptoms. I have been checked up and down these past two years and I am fine on paper, all tests always come back fine. It was not until I developed pitting edema and a hump on my upper back that I was finally taken seriously. I have seen 11 Drs this past year and no one could offer any explanation. The pain was overwhelming especially in my legs, I get terrible migraines far worse than my usual and the neurological problems are embarassing and frustrating. I need some input by others that have been here. What tests should I have? What kind of Dr should I see? What meds help? I am already on Lyrica and it has been a Godsend for the pain. HELP PLEASE!
    Marcy
  7. richvank

    richvank New Member

    Hi,newbies!

    Recent measurements have shown that by far most cases of CFS involve glutathione depletion and a partial methylation cycle block. This is the same disease mechanism that is present in many cases of autism. Mom2sixboys, I was especially struck by your statement that one of your boys has autism. There is a genetic component in both autism and CFS, and recent research has shown that there are many cases of mothers with CFS who have children with autism. This all fits together well in terms of genetics and biochemistry, and it is very treatable. See the references in my bio on this board if you want to read the theoretical background.

    Please read my post of July 18, 2007, on this board concerning the methylation cycle block treatment. And if you can, get the methylation panel offered by Vitamin Diagnostics. It will tell you whether you have glutathione depletion and a partial block in the methylation cycle. If you do, I suggest that you consider, together with your doctor, this treatment to lift the block. It costs less than $3 per day, and it's all over-the-counter, no prescriptions. The longer a person has CFS, the more toxins and infections appear to accumulate, and the longer it will likely take to get rid of them and to recover, so I urge you not to put off checking this out. I'm not financially connected either to this lab or to the suppliers of the supplements used for this treatment. Other people on this board can tell you about their experience with this treatment, which is only about a year and eight months old.

    Here's the contact info:

    Methylation Panel

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    USA
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., EST)

    The methylation panel requires a doctor's order and costs $300. The best way to get it is to ask your doctor to fax an order and request that the test kit be sent to your mailing address. Dr. Audhya is willing to help doctors with the interpretation over the phone.

    I hope this helps.

    Rich

  8. richvank

    richvank New Member

    Hi,newbies!

    Recent measurements suggest that most cases of CFS involve glutathione depletion and a partial methylation cycle block. This is the same disease mechanism that is present in many cases of autism. Mom2sixboys, I was especially struck by your statement that one of your boys has autism. There is a genetic component in both autism and CFS, and recent research has shown that there are many cases of mothers with CFS who have children with autism. This all fits together well in terms of genetics and biochemistry, and it is very treatable. See the references in my bio on this board if you want to read the theoretical background.

    Please read my post of July 18, 2007, on this board concerning the methylation cycle block treatment. And if you can, get the methylation panel offered by Vitamin Diagnostics. It will tell you whether you have glutathione depletion and a partial block in the methylation cycle. If you do, I suggest that you consider, together with your doctor, this treatment to lift the block. It costs less than $3 per day, and it's all over-the-counter, no prescriptions. The longer a person has CFS, the more toxins and infections appear to accumulate, and the longer it will likely take to get rid of them and to recover, so I urge you not to put off checking this out. I'm not financially connected either to this lab or to the suppliers of the supplements used for this treatment. Other people on this board can tell you about their experience with this treatment, which is only about a year and eight months old.

    Here's the contact info:

    Methylation Panel

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    USA
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., EST)

    The methylation panel requires a doctor's order and costs $300. The best way to get it is to ask your doctor to fax an order and request that the test kit be sent to your mailing address. Dr. Audhya is willing to help doctors with the interpretation over the phone.

    I hope this helps.

    Rich


    [This Message was Edited on 10/12/2008]
  9. Mom2SixBoys

    Mom2SixBoys New Member

    I just read the article about this last night. Very ironic! Needless to say I cried at the thought that I am responsible for my little angel having Autism. After a good night sleep I realize that me being sick may actually help him. Are you Dr. Koyenburg? If so I am very grateful for your research! The problem I have found with tests like these is that we are military living in a small NC town. When I asked for my son to be checked for Gluten and Cassien allergies they told me there is no way to check for that. In the two years since his diagnosis very little has been done. I have read as much as I can but I have been ill for two years so my life gets very overwhelming. I will certainly ask my Dr. to do the tests that you are recommending. Unfortunately, this is not a very forward thinking area to live and most Drs have small town mentality. Incidentally, Camp Lejeune has the highest number of children with Autism than any other Marine Corps Base and we do not have a Develomental Pediatrician! You know I wish I would have gotten sick before my little guy had gotten those vaccines! Thanks for the info Rich! Maybe our next duty station will be out there in beautiful CA where there are some real docs!
    Marcy
  10. Mom2SixBoys

    Mom2SixBoys New Member

    Clearly you are Dr Koyenburg! Please forgive my stupidity! I read your article last night and feel enlightened by all of your info. I have been jumping up and down blaming my sons vaccines to every Dr he sees. Incidentally he is son #5 so I knew immediately something was not right after his one year vaccinations. He was a perfectly normal baby up to that point. I never even thought about Autism being the problem I just knew something was wrong. I told his Drs at the Naval hospital for 4 years that something was wrong but they would tell me I was overreacting. I guess what saved my older children this fate was that they got signifcantly less vaccines. Please continue to research this genetic link so we can keep these kids that are more vulnerable from getting these vaccines! Thanks for all of your hard work on our behalf!
    Marcy
    [This Message was Edited on 10/13/2008]
  11. richvank

    richvank New Member

    Hi, Marcy.

    Yes, I'm Rich Van Konynenburg. I was in the military myself a few years back, and I understand about the limitations on getting nonroutine types of medical care in the military.

    I hope you will not blame yourself for your son's autism, though I understand how mothers seem to naturally tend to feel responsible for just about everything that happens to their kids. The fact is that none of us has a choice about which genetic polymorphisms we inherit from our parents, and that goes for me and you and your kids, too. The good thing is that we are starting to find out that we can do some things to compensate for some of the ones that can cause problems, and I think it is very possible that both you and your son can be helped by similar treatments, given that there is growing evidence for a connection between CFS and autism.

    I recommend getting the methylation panel, if you can do so. If that isn't possible, you could still consider trying the simplified treatment approach for lifting the methylation cycle block, and just see if it seems to work. If you do this, though, it's necessary to be monitored by a doctor during the treatment, even though it's composed only of nonprescription nutritional supplements, because a few people have experienced adverse effects while on it. My post of July 18, 2007 gives the details.

    Best regards,

    Rich
  12. Mom2SixBoys

    Mom2SixBoys New Member

    Thanks so much for the replies! My husband and I are sitting here in awe that you have taken the time to reply! You rock! Is there any type of Dr that is more open to unconventional medicine? I just recently started seeing a new doc who is a DO. My husband petitioned for our family to be seen outside of the Naval Hospital and were approved so I am hoping things will improve with our care however, I had to pick our docs from a list given by Tricare without knowing anything about them. Thanks for your input!
    Marcy
  13. richvank

    richvank New Member

    Hi, Marcy.

    I would say that DO's are more likely to be more friendly to alternative medicine. So are naturopaths, but not all states allow naturopaths.

    One of the largest alternative medicine organizations is
    ACAM. They have a doctor finder setup on their website at www dot acam dot org. You put in your zip code and the number of miles you are willing to travel, and they tell you some doctors who are part of their organization.

    There is also a group called the Defeat Autism Now! or DAN!. These doctors treat autism biomedically, based on the methylation cycle block concept. You can find one near you by going to the Autism Research Institute website at www dot autism dot com. Under "Defeat Autism Now", click on the last bullet, which is "Clinicians." Then click on "clinicians ... United States" and then click on "licensed healthcare providers". Then scroll down to find your state, and there are DAN! doctors listed there.

    Rich
  14. Mom2SixBoys

    Mom2SixBoys New Member

    Rich,
    We actually got a referral to see a Developmental Ped. last fall and she told us about DAN. She also gave us a list of blood tests that she wanted Gabe to have but our insurance does not cover them. Our referral expired and we went to his new Ped. to get another one but she told us that they do not care for that doc because she practices "on the fringe." I will probably be switching Gabe to my doc. Tricare recently sent us a letter saying that they now cover up to $1500 a month in special services for Gabe. I have not had a chance to find out what that covers but hopefully it will at least cover some testing and OT for his sensory issues. It is very frutsrating that these children can not get care that could possibly be very beneficial due to a medical society that can not see beyond what's conventional. Sorry to vent. Thanks for the info I will give my new DO a try. I plan to give him the info on the treatment plan you gave me and we will see what happens.
    Take Care and Thanks,
    Marcy
  15. richvank

    richvank New Member

    Hi, Marcy.

    I just noticed that on the www dot autism dot com website, in the box labeled "support," there is a section for military families. You might find this worth reading. I see that they have a recent talk there about Tricare and autism.

    Rich
  16. deliarose

    deliarose New Member

    The Vitamin Diagnostics panel is $300. It was probably the only test out of the hundreds that I had done that showed a clear-cut abnormality.

    If you can swing it, I think it's worth the money.

    I've been doing some form of methylation support (Rich's simplified protocol... or Amy yasko's longer protocol )for 19 months and it's turning my life around.

    Yes, it's slow and it's a slog, but then I was sick over a decade so there's a lot of toxins to detox and a lot of viruses to get rid of.....

    I had to really scour around for alternative docs to get all the testing done that I wanted, but it's been worth it.

    Good Luck.
    [This Message was Edited on 10/14/2008]
  17. Mom2SixBoys

    Mom2SixBoys New Member

    Rich,
    I just checked out the info you spoke of and this may be what the letter we received was talking about. I have tasked my husband with gathering the info for me since things are easier for him being on the green side. Also, my days get pretty crazy since I started home schooling and he gets more quiet time during his day than I do. I appreciate you taking the time to check into that and passing the info on to me!
    Take Care,
    Marcy