NO ONE IN MY FAMILY UNDERSTANDS

Discussion in 'Fibromyalgia Main Forum' started by KIMHURTS, May 1, 2006.

  1. KIMHURTS

    KIMHURTS New Member

    HELLO,I AM A NEWLY DIAGNOSED FIBROMYALGIA PATIENT.I AM FINDING THIS DIAGNOSIS VERY HARD TO ACCEPT.I FEEL VERY ALONE AND MY FAMILY JUST DOES NOT UNDERSTAND THE PAIN I AM IN AND THE FATIGUE THAT I ENDURE.BETWEEN MY JOB AND KIDS I AM FINDING IT VERY DIFFICULT TO MANAGE MY LIFE.I DONT KNOW ANYONE ELSE WITH THIS ILLNESS.I WOULD BE THRILLED TO HEAR FROM ANYONE THAT IS GOING THROUGH WHAT I AM.IT SUCKS.AND I FEEL LIKE IM ON SO MANY MEDICATIONS RIGHT NOW THAT I CAN NOT EVEN KEEP TRACK.MY DOCTOR SAYS I SHOULD TRY TO KEEP ACTIVE.BUT ANYTIME I DO ANY KIND OF PHYSICAL ACTIVITY,EVEN SOMETHING MINOR LIKE VACCUUMING,I AM BEDRIDDEN FOR THE REST OF THE DAY IF NOT FOR A FEW DAYS.IM STRUGGLING HERE.ID LOVE ANY SUGGESTIONS ANYONE HAS FOR ME.
  2. Cromwell

    Cromwell New Member

    many here are going through this with the family and friends. i am lucky in that my immediate family are good to me. I am sending you big hugs and letting you know this family here do understand and will stand by you.

    love anne c
  3. ibnormal2

    ibnormal2 New Member

    I went through a personal hell before I was dx...I didn't know if I was crazy or lazy...Well it was neither one...But I was very hard on myself...I have since learned that you have to keep active...Do not stop...But you also have to learn how to pace yourself...I am almost totally disabled...But I do keep going as much as I can...On a ok day I try to excercise more...To the normal person it is probably a joke the amount of excercise I do...But no matter how much or little you do it all counts...There are a lot of people who do not believe this is an illness...But I have been real lucky with my family and most of my friends...I have a good support group in my family...I have one friend who doesn't believe I am sick...But I still keep her as a friend and just mark it up to ignorace...We learn to deal with fibro and make the best of it...I hope you can find a way to deal with yours...We will be here for you ...I am a good listener...Kathy F....
  4. sixtyslady

    sixtyslady Member

    You"ll get alot of support from this board, its just like having a really good friend to talk to. everybody is so helpful .
    My kids don"t understand and their grown, so its hard to get passed all that, but you will realize that its not just in your head and there,s others that are going thru the same things you are.
    all I can say is welcome and hang in there.
    Sixtyslady
  5. NyroFan

    NyroFan New Member

    Kim:
    Slow down and get as much rest as possible. Many of us run into the same problems you have, especially the working women. You are no alone. Stick around here and keep reading.
    You will feel much better. If it helps to know, I have unbearable pain too and take narcotics prescribed by my doctor for it. Stay on your meds. Just slow yourself down by putting the brakes on.

    hugs,
    nyrofan
  6. insanelady

    insanelady New Member

    Hi. Sorry to hear about what is going on in your life. I am lucky that I do have an understanding hubby and family. I was working but it became just to much for me. Fibro fog made me forget lots of things and boss would get angry.I try not to take anything..I entered a Fibromyalgia day care program here for one month that taught me to pace myself and let others do for me when I could not.They also gave us a list of stretches and strengthening exercises that we could do to help the pain and it does work.

    Try to rest as much as possible but see if you can get in a program to help you ...

    Vacuming is one of the worst jobs at least for me. See if hubby will do it instead.

    It is difficult to manage your life and we are here for you. You have come to the right spot..

    Get some Magic bags and heat them and take warm baths.

    How old are your children..Any old enough to help out.

    Keep active yes but our bodies hurt if we do to much.

    Hope I have been some help to you.

    (((((Gentle Hugs)))))))


    Rosie
  7. mme_curie68

    mme_curie68 New Member

    I was right where you are now about two months ago.

    Then my doc put me on low-dose Adderall to symptomatically treat the unrelenting fatigue.

    I can't tell you how much of a difference it has made in my life.

    I have also changed my dietary habits - the more processed the food, the worse I feel.

    I take a TON of supplements - multivite, acidophilus, Ester-C, Omega-3, L-carnitine, Melatonin, Valerian root, Magnesium.

    I got a rx for Flexerall (muscle relaxant) to take each night to help my muscles relax and I have a rx for Naproxen so I only have to take it twice a day.

    I take Prilosec twice a day to protect my stomach.

    And I started exercising again. I go to yoga class 3x a week.

    The most important thing I do is sleep. Good deep sleep is essential to feeling better. Get good sleep and you feel better and are better equipped to deal with the ups and downs.

    Start with one area first, and then tackle the next one and the next one. I keep a daily log of my vital signs, exercise, and pain scale to see how I am doing.

    Huge difference from when I was first diagnosed. I felt terrible - I just wanted to die. I was so sick of being sick and tired and nobody being able to tell me what was wrong with me. Then, once I got my "label" I got drop-kicked right back to my psychiatrist and internist because I am also bipolar. The rheumatologist didn't want to touch me with a ten-foot pole.

    I work full time, and I have two kids, a house, etc.

    The one thing I do that is the most important thing is PLAN CAREFULLY. You do need to listen to your body and when it says "Enough" that means STOP. Most of us went into flares after Easter because we all did TOO much.

    This board has been a godsend and a life-saver.

    Here, there are many understanding and caring people from all walks of life and every circumstance imaginable. There's a lot of information here and chances are, if you are experiencing a particular symptom, someone else has as well and has some tips for coping.

    An easy basic book to get you started and to help family members understand is "Fibromyalgia for Dummies".

    I ordered the FM book from the Arthritis Foundation and it has YET to arrive after two months. So much for that.
    Fibro for Dummies is pretty good.

    When I'm feeling good, I try to do a little extra in the house. When I don't feel good, I just rest. I clean when I have to and skip it otherwise. Nobody's perfect and you have to save your energy for more important things.

    Hugs,
    Madame Curie

    Hugs,
    Madame Curie
  8. sydneysider

    sydneysider Member

    Sorry that you are going through this. Unfortunately, it is normal for most of us that family and friends do not understand. I have eventually come to accept that only the people that suffer from these diseases are capable of understanding the suffering that we go through, and I no longer have any expectation for other people to understand.

    It is good that you have found this board, as it really helps to discuss problems with people who truly understand.

    While I would agree with your doctor that it is good to keep active, I have found that I do best with only very gentle activity. As far as housework goes, all I can say is get as much help as you can, even if it means employing somebody to help.

    You'll get plenty of understanding, advice, and tips here. All you have to do is ask. You are not alone,even though it may feel that way. There are millions of us around the world, all going through a similar experience.
  9. Lolalee

    Lolalee New Member

    Kim, since you are new to the board, I thought it might be helpful to tell you something that has been pointed out many times. Everything is so difficult for us and one thing that is hard for many of us is reading posts that are ALL CAPS and also those that are run together into one paragraph.

    Some of us have to skip over posts written in this manner because it's so hard for us to read them. So, please don't take offense, it happens to all of us. Please use both upper and lower case print and insert paragraphs.

    Thanks so much.

    By the way, if you are having so much difficulty exercising you might have Chronic Fatigue Immune Dysfunction in addition to Fibro.

    Good luck!!

    Lolalee
  10. RENA0909

    RENA0909 New Member

    WHEN WE ARE FIRST DIAGNOSED...IT IS LIKE A LIFE SENTENCE!!!

    But as you learn more about your fibromyalgia you will also learn to accept it and learn about things that will help YOU!!

    This board has saved my life because when I was diagnosed 8 years ago (here in England)I had NEVER heard of Fibro....NOR had anyone I knew!!!ESPECIALLY the doctors !!!!

    This site is the best I have ever found.It has educated me about fibro and even though I suffer I know that ANY symptoms that I have will be able to come here to find friends.....support ......and answers to ANY KIND of questions or worries you may have..

    Take care Kim

    Rena

  11. Lalania1970

    Lalania1970 New Member

    Kim
    I went through the same thing when I was diagnosed over 3 years ago. I was always told by my family "OH its all in your head if you would just forget about it you wont feel it" HA!!! I finally told them that they would never understand and that just cause some days I can do lots (even though then I am down for a few days)other days I cant even brush my hair. So I have found a new extended family through this message board and through the chat room. Also find a good support group if they have one in your area if not talk to local hospital, clinics or even hospice about starting one. The last town I lived in didnt have one except 1hr away which was to far for me to travel so I got ahold of the clinic there and started one. If it is only just 2 people it makes a difference as they can relate and they dont look down on you.
    Good luck & God Bless!!!!!
    Lani
  12. sues1

    sues1 New Member

    Also read "the thief of many lifes"

    http://www.ourfm-cfidsworld.org/html/the_thief_of_many_lives.html

    Do NOT let it depress you,they are finding new things more and more all the time. Read here on a regular basis and find out what is right for you!

    My point in listing above to read....is to print it out and hang it somewhere for others to read. You can also email it to people and mail it to them also.

    Make them think twice...................Susan
    [This Message was Edited on 05/02/2006]
  13. SandraJean

    SandraJean New Member

    Hi Kim,

    Welcome. I'm sorry to hear about the trouble you are having with this dx. It can be very hard.

    I just saw your post about finding a support group and I'm from Pittsford, New York and there is a support group in both Greece and Brighton. I just posted more informatio about it on the support group thread. The Greece meeting is the second uesday of the month at the Greece Town Hall at 7:00-8:30. The other one is in Brighton at the Brighton Recreatio and meets from 11-12:30 on the last Wednesday of the month.

    I have attended the one in Brighton. It's very good. They all meet from September to June and there is alot of good information and great people.

    I don't think I can post e-mail address or regular addresses for this group meeting, but hope you will be able to attend.

    Take care,

    Sandy
  14. jenni4736

    jenni4736 New Member

    Everyone here gets it! It is so hard for maost of all of us most every day. I have three kids from 5-15 years old and the little one is still home all day.

    I have battled Fm for about 12 plus yrs now. I have found that my mental struggle is my biggest challenge on a daily basis. For me, I believe the depression came AFTER the disease.

    My daily struggle with the mystery pains and struggles of FM are the reason I have ANY depression. It is hard to be in a good mood because I get tired of hurting and tired of being tired!

    My mental aspect of this DD has only recently begun to improve, and it's because of THIS BOARD! I felt very isolated before because even though I had my family (who is great) I finally felt like some one REALLY understood.

    Use this board to vent, to ask all of those questions you are afraid to ask, and just for moral support! No question is dumb here...if you have the problem, one of us does too most likely! I have only been here a few weeks myself, but I know it's a safe place to come to ask anything...anytime I need it.
    jenni
  15. Fibrolady37

    Fibrolady37 New Member

    kim a very warm welcome to the best board you will ever find & a warm welcome to you as your now part of my fibro family.
    I was dx with ME,CFS,FMS & a very long list of my other 40+ illnesses.
    My sister said it was all in my head,my dad just didnt understand he was convinced i had arthritis.
    My family hurt me so badly i had to make one of the hardest decisions ive ever had to make.
    And i cut all ties with them i send money to both my nephews for birthdays & christmas.
    I got rid of all the dead wood in my life i didnt want my daughter around people who were so ignorant & nasty to me.
    May god bless you & yours.
    Hope this helps.
    Fibrolady37.