hello. newly diagnosed, sixteen. questions?

Discussion in 'Fibromyalgia Main Forum' started by sherridl, Feb 10, 2006.

  1. sherridl

    sherridl New Member

    i was wondering,
    i'm 16 years old, and i just got diagnosed with FM two days ago.
    before getting diagnosed, i traveled around numerous doctors,
    and one doctor told me it was depression, and all in my head.
    nevertheless, i've still been sick for about four months.
    i haven't been able to get back in school really,
    and it takes a tremendous amount of effort to stay out for
    longer than two to three hours.
    and even then, i only usually do that once every couple weeks.
    so, i guess my question is...
    how did you guys get your lives back on track?
    i really want to get back to my normal life,
    exercise, hang out with friends, go to school.
    but i don't know how to.
    is there anything that helps,
    other than exercise, knowing your limits, etc?
    and does anyone here get real bad migraines
    that last for a week or two?
    i just got put on a new med for fibro, cymbalta, the other day.
    any experience with that?
    sorry for all the questions,
    i'm just kind of worried about it all.
    i haven't heard of anyone as young as me getting it.
    as far as they can tell, nothing triggered it.
    it just appeared one day.
    my mom also has it, but we're doubtful i got it from genetics,
    because she got it as a complication from a med.
    anyways, any kind of advice or help would be appreciated :0].
  2. lovinlifeinAK

    lovinlifeinAK New Member

    So sorry you are going throught this so young. If you do a search on Cymbalta there are many threads on it. I don't know what to say that would help you....but this reply should bump it to the top for more responses
  3. sarahann61

    sarahann61 New Member

    I don't have all of the answers, but hope someone can help. I sure hope ,and pray, that you will be better soon....
  4. AnneTheresa

    AnneTheresa Member

    WELCOME to the board, Sherri! I'm sorry to hear of your diagnosis. FM/CFS can be difficult, to say the least. I've read that the younger a person is when they're diagnosed (and the soonest after the onset of symptoms) the better their chances for a partial or full recovery. So don't give up on getting your normal life back.

    In the meantime (and not knowing how long you will be plagued with symptoms), my advice would be to develop a 'new normal'. By that I mean, consider ways to live a good quality of life within the framework of this illness. I can share with you some of the changes I've made in my life in order to live well and successfully with this illness. It may give you some ideas on how you can manage your own illness.

    SETTING PRIORITIES: I've learned to let go of a lot of busy-work and unnecessary outings, in order to focus what energy I do have on doing the things I love. In order to do something I want to do (for example: spend an afternoon at the park) I need to give up doing something else (for example: I may ask someone else to buy my groceries that week).

    I decide ahead of time if the event or outing is worth the few days time I may need to recover from it. If the outing is not that important to me (for example going to the wedding of a distant relative) then I'll send my regrets. Most people understand I'm unable to do everything I'd like to do and they are not get upset if I don't attend. Once and a while someone will get their feathers ruffled but - as long as I've declined the invitation politely - I consider their upset to be their problem.

    ASKING FOR HELP: I've let go of my resistance to asking others for help. At first, it was difficult for me to ask for help but I've since learned that most people are happy to do a favour (a ride to the doctors, help with the housework, etc.). I try to show my gratitude in small but meaningful ways (for example a nice card, kind words or small gifts).

    SPECIALIZED ITEMS: As well as asking people for help, I've found many inventive and helpful things to make my life easier. For example, over the years I've purchased a massage chair, an electric bed, a bath chair, a reacher, a walker, canes, a back brace, heating pads, etc. to assist with my day-to-day living. I'd love to get a hot-tub - that's next on my list ~ dreaming now ~

    MEDICAL CARE: It took me a long time to find a good doctor (and other health care practitioners) but I finally found someone who works with me in partnership to find the best course of treatment. I tried many different medications before I found the right 'cocktail'.

    I continue to find varying degrees of benefit from such things as physiotherapy, massage therapy, acupuncture, chiropractic, vitamin therapy, lidocain infusions and energy healing.

    COUNSELING: Although FM/CFS is not caused by mental health issues, people often benefit from counseling to help deal with the emotional aspects of a chronic illness. It's natural to feel depressed when faced with something of this magnitude. Grief therapy can be helpful as can specific therapies related to pain management. I took a great course through the Arthritis Society about managing pain and living with fibromyalgia. There may be something like this in your area.

    LETTING GO OF TOXIC PEOPLE. In order to de-stress my life, I had to let go of several people who were not good for me. This included friends and family who were negative and bad-tempered, were using me - taking without giving, or generally not treating me with the respect I deserve. Now - although my circle is smaller - the people in my life truly love and support me and are good, good folks.

    PEER SUPPORT: It's wonderful to talk to people who are going through the same things. You're fortunate to have your mum understand what you're going through. In my 3-D world, I don't know anyone other than myself with this illness. But, thanks to this board I've met some wonderful people, learned much and experienced true friendship.

    DISCOVERING NEW THINGS: I've learned how to do things in different ways to accommodate my physical limitations. This includes things like how I organize my home so I don't need to bend or stretch to reach anything and how I do housework. I've learned to pace myself and take frequent rest breaks.

    Because I've lost the ability to do many of the things I used to enjoy (hiking, playing tennis, aerobics, dancing, etc.) it's been necessary to find new things to do. For example, I'm learning how to do Japanese embroidery and enjoying it very much. In my pre-fibro days I would never have considered such a hobby. Since becoming ill, the many new things I've discovered and learned have convinced me there is a silver lining to the dark fibromyalgia cloud.

    ACCEPTANCE: Accepting my lot in life and learning to go with the flow has helped me achieve a measure of happiness in spite of this illness. Acceptance doesn't mean giving up. It means when I have a bad day or I'm in the midst of a flare, I don't fight against it. I accept the reality, take extra good care or myself, rest as much as I can and trust there are better days ahead. It's important to hope for better days and continue to work toward recovery.

    Once again, welcome to the board. I look forward to reading your posts and getting to know you better.

    God bless,
    Anne Theresa
  5. elsa

    elsa New Member

    I'm glad you found this place .... You will find alot of great information and support here.

    Most of us had to learn what our "limits" are ... That doesn't mean you can never do the things you love again, but that you might need to do them in a different time frame.

    People do make it to remission so don't give up hope. Read and research all you can and talk things over with your parents .... Usually a combo of treatments helps us deal with CFS/FMS. Massage, acupuncture, supplements as well as rx medications.

    Have you had a sleep study done yet? Almost all of CFS/FMS patients have documented sleep disorders .... The main one being "Alpha Intrusion". There is medication that can help you through it and start getting decent sleep again. This would be a great place to start in making your treatment path.

    You can put words like sleep study in the above seach and start getting more information on it.

    Also, we are such a funny group where medication is concerned .... What will work great for one person won't work at all for the next ..... Don't let this discourage you. Keep putting one foot in front of the other ... you'll find what works best for you .....

    Elsa

  6. Cromwell

    Cromwell New Member

    How awful for you to haave this so young. My son who is 11 has it too, though not too badly. Part of your problem will be explaining to PE teachers and such you cannot overstress your muscles. Yesterday, the PE teacher at my son's school took him out of his Special Ed class into main Gym class where he made my son join in regular program. Result. Son is in terrible pain today. As he has autism, he cannot speak up for himself. You can and MUST.

    As I also have FM I do think it can be genetic, esp. for epople who have hypermobility(like double jointed).

    There are many things you can do to help ease the pain. I think the best is Epsom Salt baths and masage, so long as you have someone who knows what they are doing.

    Welcome to the boards and good luck.

    Anne