hi everyone i am a newbie,please give me advice...

Discussion in 'Fibromyalgia Main Forum' started by tadah, Apr 6, 2006.

  1. tadah

    tadah New Member

    i am about to be diagnosed,but have been going through this for about 1 year and it has gotten much much worse..I am only 36 and scared to death that i was just basically given a death sentence,i am really scared that my life is over.also i have never even heard of cfs or fm until a month or so ago.i am gaining all kinds of weight is that normal? i know most of you hear this sob story all of the time but i am lost and sooo not educated on this at all.i am absolutely beside myself and have noticed that when i try to explain thi to my friends and family [not that i can very well} but they look at me like i am lying,do any of you get that feeling? my friend suggested i join a message board that it can be very helpful,so thats what i am doing,please give me some advice.....

  2. PVLady

    PVLady New Member

    Welcome to the board. Many people and doctors do not feel fibromyalgia is "progressive". In fact, many of us here have taken steps that resulted in dramatic improvements in our conditions.

    Fibromyalgia is a diagnosis after every other cause of your symptoms is ruled out. If it is fibromyalgia only, there are many things you can do to get better. If you keep reading and sharing here, you will learn alot.

    Most improvements are through "trial and error" as to what will help you. Stress reduction, pain management, diet, dietary supplements, sleep etc.

    You did not get sick overnight and will not get better that quick, however I do believe with your best efforts
    it is very possible to achieve a remission.

    Many here have, including myself. Two years ago I was sooooo sick and practically housebound. I found a good doctor to treat pain (I rarely have flares anymore). I am on a medication to control pain (Subutex), Ambien 5 mg for sleep, Tylenol Gel Caps and Ultram for pain.

    I had to make many changes in order to get better. Don't ever lose hope, you really can get better.

    [This Message was Edited on 04/06/2006]
  3. natrlvr2

    natrlvr2 New Member

    The hardest part for me was not the pain,but the life style change and accepting it.I have other pain issues too and am now legally disabled.So not being able to work was the hardest to accept.
  4. sues1

    sues1 New Member

    Welcome aboard our ship as we sail here and there...that is supposed to be humor.....Oh Well, I will stop.

    What a great name....I love it.

    I first fell and never stopped hurting......Dr. said "Fibro". I thought that was not it, it made no sense, I ran from Dr. to Dr. from test to test, with no success.

    Then a few months later I got the flu, and it would not leave me, and the same Dr. said,

    At first I did not believe this. It was too inane, made no sense, had to be something else. I was confused with this.

    Finally I read about it in a magazine and by then I knew it was true....it was as if they were writting about Me!

    So do not get upset with the ones that do not understand, as it is hard for us to understand and acept it also.

    My thoughts are that this is multi illness, has several aspects to it. That is how I feel, but think for yourself as you study it all. So it is not easy to treat. But have heart as there is many studies and new findings all the time on this. Anything new usually ends up being posted here as together we have many ears and eyes. Also we have some really intelligent folks here to share with us. Sorry you did not get one with me....LOL.

    My heart goes out to you.....the first part was the worse and emotionally it drained me. I have learned: Keep the faith.......research....study......be true to yourself. You know the song "The Gambler". We have to learn when to play them and when to fold them..etc. You have to relax on this and listen to your body to what it needs.

    A Rheumy is usually a good Dr. to see, if he understands our problems. Check around. It is difficult to find the right Dr. Maybe you have one already.

    There is much to try for to feel better. All of us react differently to various meds. But you can ask your Dr. about them. In time you will find what works for you. This does not kill us. Just makes us feel very bad, as you know.Well, I have wrote so much that I will stop here.

    This is a good source of help. Ask any questions you want, as long as it is in the guidelines of this message board.

    Sending gentle Hugs and many blessings.........Susan
  5. NyroFan

    NyroFan New Member

    It is probably best to hang around here and also do some reading on the net about the diseases. Friends may not understand even armed with info about what you are going through, especially if you were once a picture of health and now a wreck.

    Most importantly, do not get upset or stressed. Rest as much as you can: physically and mentally. Take time for yourself and your friends will either stick and stay or run away. Plan to see some disappearing. (Not a thing you can do about it). Some friends may be super-understanding and they will make up for lost ones.

    I am sure you will get more advice. You can also use the search engine here and plug in a subject and read what members have written in the past about particular things.

  6. tadah

    tadah New Member

    Thank you everyone you all were really helpful.i do think this site will be helpful to me,as i have stated i am new at all of this and could really use some listening ears out there... so thank you again..Also anyone out there have a tonsillectomy? and did it help with the swollen glands? 'cause i am having one in about 2 weeks,and was wondering if i am putting all my eggs in 1 basket?
  7. mme_curie68

    mme_curie68 New Member

    Welcome to the board.

    This site is a wealth of information both for the recently diagnosed (like you and me) and the "experienced" FM'ers and CFIDS'ers.

    There's a decent book out called "Fibromyalgia for Dummies" that gives you all the basic information about FM in an easy to understand format.

    I am 37, and I was diagnosed (dx'd) at the end of February 06 with FM after being on the "doctor parade" for 13 months after the delivery of my second child. I had a very complicated pregnancy (high blood pressure, diabetes) followed by additional complications (thyroid disease, osteoarthritis) after I gave birth. I was on full bed rest for the last four months of my pregnancy.

    I am convinced that this last pregnancy and all my endocrine problems caused the development of FM. I never had symptoms prior to the pregnancy.

    What has been helpful for me is to be treated for my symptoms - Adderall to combat the unholy fatigue, Flexeral to relax the muscles at night while I'm sleeping and I have added a number of supplements to my regimen: a multivitamin that is dosed twice a day, acidophilus beads to keep my digestive tract healthy, biotin and L-Carnitine to support the metabolism of long-chain fatty acids, melatonin and valerian root to help me sleep. Co-Enzyme Q to help support the Krebs Cycle ( a biochemical cycle in your body that converts nutrients to energy at a cellular level).

    I am also taking yoga classes 3x/week. I can't do cardio and weight bearing exercise any more - it just doesn't make me feel good.

    I changed my diet drastically - eliminating almost all processed foods.

    In the month and a half that I have been doing this I feel a heck of a lot better than I did when I was dx'd. One of the major contributors is the Adderall (an ADHD drug) at a sub-ADHD dose. I take 10 mg first thing in the morning, another 10 mg at lunchtime if I'm feeling exhausted and 5 mg at about 3 pm if I need it. At first I needed it 3 times a day, but right now I'm finding that once a day in the morning does the job as long as I am not in a flare-up.

    Again welcome! This community has been VITAL for me keeping my sanity in a non-FM world.

    Madame Curie
  8. Jordane

    Jordane New Member

    No this disease is not a death sentence.There are a LOT of nice people here who will listen and support you thru this.
    Have also got THOSE LOOKS from people.But we know what we have is VERY REAL!!
    Take Care!!
  9. Malteaser1955

    Malteaser1955 New Member

    Hi, It's very hard when you get a diagnosis like this, however my own came secondary to a more serious condition. However the Fibro/CFS has been the one to cause major problems, and just recently I tried Electrolyte Therapy, see the posting for it, there's a website for purchase link. I am much improved, but do not exert myself, but have my life back at least.
    Wish you all the best, do not give up, there's an answer out there for all of us somewhere, for me it works.
  10. ColdinMN

    ColdinMN New Member

    Hi Tadah! I am 35 and was diagnosed in Nov. I have the same problems! I found that if I just ask people to remember when they had the flu and how they just ached and hurt all over. I tell them times that by 2 or 3 and that is how if usually feel every day. It does not cover all the symptoms but they tend to get the picture. Right now I am trying myofacial message and accupunture to try to relieve some pain.

    Don't look at it as a death sentence... think of all the time you spent working to find out what was wrong with you and the unknown and stress that caused. Now you have the diagnosis and can work to treat the symptoms! The more you worry, the more stress you have and I find that can trigger flares faster than anything else. Take that energy and devote it to researching alternative ways to stay healthy, diet, vitamins, yoga, and rest! I initially had a real problem with taking pain meds and other prescription medicine - getting over that issue was a turning point.

    Anyway, take care and know that you are not alone!
  11. mom4three

    mom4three New Member

    I wanted to say this is not a death sentence. I hope you do know that. I know you may not feel that right now. I know there are days even right now that I don't "feel" that but I always "know"that. Just take a really deep breath...
    Ok so what your doctor may have said is go run out excercise and life will be better well don't.. Try and do some light yoga or some warm pool stretching and get some good medication and pain pills. it really helps.
    Also try and see a neurologist not a rheumatologist.. We are finding more and more that this is neurologically related...

    You are not alone. We are here for you Hon...

    30, dx since 1998

    NYGALINFL New Member

    Hi I was your age when I was first diagnosed with Fibro and CFID. Yes it was scary. At the time I was married and in a totally different financial situation and was able to get massages, acupuncture and a personal trainer. I felt o.k considering what I had heard. I also have trouble with weight gain. I can just gain ten lbs without changing anything in my activity level or diet . Very frustrating indeed. Just make sure you do everything you can. Pace yourself and don't do everything in one day. This disease is life changing and most people don't get it. I wish you the best and hang in there.