Resources for Families?

Discussion in 'Fibromyalgia Main Forum' started by lobot_84, Sep 9, 2006.

  1. lobot_84

    lobot_84 New Member

    I am a parent of a newly diagnosed FM patient.

    I have been looking through the posts, but haven't seen a lot of advice for the family members of FM sufferers.

    How much should I try to help? How much should I leave her alone? What kind of things help? What kinds of things hurt? I want to help her have as close to a happy, normal life as the DD allows...

    Any ideas about resources for the families to help cope with the DD?
  2. cjcookie

    cjcookie New Member

    I guess it depends how old your son or daughter is. Does she/he live alone? Here are the best things that my Mom does to help me. She cooks dinner quite often and invites me over or brings it down if I don't feel like going to her house. She offers to help me clean. Those are my picks!

    Glad to see a supporter on here.
  3. minkanyrose

    minkanyrose New Member

    http://www.fmaware.org/patient/family.htm

    I FOUND THIS SIGHT HELPFUL TO ME TO EXPLAINE TO MY FAMILY HOW I FEEL HOPE IT HELPS YOU ALSO YOU ARE VERY WONDERFUL TO WANT TO BE A PART OF YOUR DAUGHTERS DD. gOD BLESS YOU
  4. Lendy5

    Lendy5 New Member

    Hi Lobot and Welcome to the Boards!

    I am in awwwhhh for the kindness and iniative you are taking for your daughter.

    There is a world of information here on the boards and by far this is the best website that supports this illness.

    I think you have taken the first most important step at asking how and what can you do to help.

    Be supportive anytime she needs to talk and there are going to be days that she feels overwhelmed and will need loved ones by her side.

    Be patient because there will be times when she becomes forgetful, gets her words mixed up or loses her train of thought, we call this "Brain Fog"

    There are some great books on fibro that are easy to read "Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd Edition" Author: D.Starlanyl and

    Fibromyalgia and Chronic Fatigue Syndrome 7 Steps to Less Pain and More Energy, by Fred Friedbert.

    At the top of the message boards you will see blue tabs that offers help for coping with Fibro.

    She is very lucky to have you and I wish you and your daughter best wishes!

    Remember don't ever lose hope. (((((Hugs)))))


    Love & Hugs,
    carolin
  5. lobot_84

    lobot_84 New Member

    Thank you, all of you, so very much.

    I'm sure all of you appreciate better than I do, how very hard this is at the outset.

    She's 20, and was on her own, at college 1500 miles away from our home. As a result of DD, she is now back living with us, and feeling very much deprived of the life she had built for herself.

    Just a question: how involved would you recommend we be in her schedule? Is it helpful to try to encourage her to go to bed / get up at set times - or, if your parents tried to do that to you (at age 20) - would you feel you'd been treated like a child? Is trying to maintain a schedule of sleeping and waking even appropriate?

    An especial thank you to Prickles - your posts are so positive and optimistic, and your response to my post so generous that you are an ongoing inspiration to me.

    Thank you again.
  6. JLH

    JLH New Member

    Mom,

    I think everyone else has given you some good advice, so I won't repeat anything they have said.

    I would just encourage her to keep a positive attitude and keep moving. Even though a lot of people with fibro do not want to exercise, it has been proven to help. Walking is enough. Maybe you and her could go for a short walk each day and eventually build up to a longer walk.

    Also, warm water aerobics is excellent. That is my favorite. I don't know if you have any facilities with pools in your area, but if so, check and see if there are Arthritis aerobics water classes.

    It may also be nice for you to go to her doctor appointments with her.

    I don't know if she is on any meds yet or not, but the docs will normally start fibro patients out on Elavil at night. It will help the pain and help her sleep. It can be very sedating to some people, so you may have to work with the doc for a proper dosage.

    Also, there is a non-narcotic pain reliever called Ultram that may help her. If it is not enough, she can add ibuprofen to her med routine and it will not hurt to take it with the Ultram.

    I hope she starts to feel better soon. Show her our board so she can join, too!!

    Hugs,
    Janet
  7. lobot_84

    lobot_84 New Member

    I think I'm touched you assumed I'm Mom. I'm actually Dad.

    I really appreciate the insight. It's hard to know whether / how much to push, and how much to let her find her own way through this.

    I realize she's 20, and an adult, but it seems like it might be easy for someone to FM to just stay in bed without a push out of it. I hear what you are saying about exercise... but, is this something I can/should do any more than encourage her to do?

    I'm trying to be cognizant of the fact that she can make decisions for herself; things are hard enough for her without us treating her like a little kid.

    At the same time, I want her to be able to take just as much advantage of life as it is possible for her to do - so maybe I'm not pushing enough?

    She is still taking classes at a local Junior College, thank you for asking. She was (and I think is still heading in that direction) studying graphic design. The good news is that there are definitely opportunities to telecommute, if she can find a sympathetic employer.

    Thanks again for your support and concern. I have, and will point her in the direction of this web site... just encouraging, though, not pushing!

    Dad
  8. JLH

    JLH New Member

    Dear Dad:

    So sorry that I assumed you were "Mom"!!!

    I would probably encourage my children, if they had FMS, to try and get out and walk (or go swimming--at the college pool, if they have one?????) a little bit on days that they did not have classes. The more you sit around idle and not moving, the more stiff you are and the more you hurt.

    However, I know it's hard to try and tell a 20-yr-old what to do! All three of my children are over 26, so I've been there!!! LOL

    Here is another post that is on the board now that may help:

    Janet
    -----------


    Principles of Healing in Fibromyalgia & CFS


    In a decade of working with people with these illnesses in self-healing retreats and home-based programs, I have seen ten principles emerge which seem to lay a foundation for exceptional healing.

    I've been heartened and inspired to see people who follow these principles make the transition from a cyclical pattern of unrelenting chronicity into a process of gradual improvement over time.

    Healing from CFS and FM is possible – regardless of how long you have been ill. It is, however, a long, slow, and unpredictable process.

    1. PERSPECTIVE ON MEDICINE. Whatever medical support you use – conventional or alternative – see it as secondary, and what you can do to create the optimal conditions for self-healing as primary.

    2. ILLNESS AS TEACHER. You did not cause your illness, but it is a call to re-evaluate your priorities and master some valuable life lessons. See your disease as an opportunity for positive change. People who find meaning in their illness have better medical outcomes.

    3. MEDITATION. Develop a daily practice of meditation. Hundreds of studies prove its effects in reducing pain and healing the nervous system, circulatory system, immune system, digestive system, and hormonal system. It will also help you attune to inner guidance and inspiration.

    4. RADICAL SIMPLIFICATION. Reduce or eliminate television, news, noise and other agitating sources of neurological stimulation. Let your nervous system be at peace. Practice the art of being simple and present by asking yourself, "What really matters in this moment?"

    5. EXERCISE. Exercise stimulates your vital energy which is needed for healing. However, exercise must be gentle, non-impact, and not cause pain. Aerobic exercise such as walking, cycling or movement in water is helpful, as well as practices such as tai chi and chi kung. De-conditioning is common in people with CFS or FM who avoid exercise for fear of aggravating their symptoms, and this causes a further downward spiral of vitality.

    6. PRACTICE LOVING KINDNESS. Frequently stop, close your eyes, and bring your awareness to your heart. Summon feelings of appreciation, gratitude, compassion and love -- for yourself and others. This will cause body-wide changes, including the relaxation response, that can reduce the severity of symptoms.

    7. JOY AND PASSION. The subtle energy behind all healing is stirred by joy, pleasure and passion. Find ways to nourish your soul whenever possible, whether through music, art, creativity, being in nature, or whatever arouses these feelings in you.

    8. INSPIRATIONAL BREATHING. In my retreats for people with CFS and FM, as well as in the home-based programs, patients have reported their pain completely gone for a time after using breathing exercises – particularly a technique I call Evocative Breath Therapy, which involves a blend of breathing exercises, music, and guided imagery.

    9. CONNECTING. The social isolation due to physical limitations of CFS and FM is one of the greatest challenges. Yet, research shows that supportive relationships promote physical healing. Invest in relationships that support you, and practice saying "no" to those that don't.

    10. LETTING GO OF THE OUTCOME. It is a paradox that when we let go of striving for an outcome, an inner relaxation arises that enables our healing responses to work at their maximum. Replace your focus on future outcomes with an attitude of trust that your highest good will prevail.


    By William Collinge, PhD, a leading consultant, author, speaker, and researcher in the field of integrative healthcare. He has written numerous articles and books dealing with chronic conditions and healing, including Recovering from Chronic Fatigue Syndrome, available www.healthy.net/collinge/

    Source: immunesupport.com
  9. ll1816

    ll1816 Member

    Hi Lobot:

    I think the best thing you can do for your daughter is to listen to her and support her.

    Attending her doctor appts. would be a good idea as well as reading book on Fibromyalgia.

    As far as pushing her to do things, for example exercise, it's important to let her body dictate what she can and cannot do.

    I use to be an avid exerciser with my husband at the gym before I got sick. I can't exercise at all now because it makes my pain worse and drains me of energy for days.

    It's important to remember that each person with Fibro has different symptoms, limitations and severity of symptoms. Not a one of us is exactly the same in regard to our illness.

    She will feel less alone and afraid if she knows that you are listening to her, trying to understand her pain and are as supportive emotionally as you can be. Many of us feel guilty for being sick because we feel that we are letting our loved ones down. The guilt only makes it worse. She is probably going through the process of learning to accept what she's been dealt. It was hard for me to let the old me go and realize my limitations. I was always an A-type and would go, go, go. It was hard losing that and I can't say I don't miss it. That was my life! I had to learn to accept the new me, and that's a big part in the beginning.

    I hope this was helpful. Friends and family that took the time to learn and understand my challenges help me tremendously. They know that when I'm sleeping in the middle of the day, that my body is severely fatigued. They know that if I go to that picnic, I'll probably be in bed the next day (all day).

    Well, I've gone on and on, but I think it's wonderful that you are wanting to help your daughter. She's a lucky girl.

    Best to you,
    Liz
    [This Message was Edited on 09/14/2006]
  10. lobot_84

    lobot_84 New Member

    Liz--

    Thank you for the insight. You feel so helpless sometimes. About the last thing I want to do is make her feel guilty, or like we are disappointed on top of everything else she is dealing with.

    Lovingheart - my guess is, your parents are a lot more concerned than you think. A lot of the time, I just don't know what or how to talk to her about her FM; I bet your parents feel the same way.

    I imagine my daughter has no idea how worried I am about her; I certainly ask her how she is feeling, but when the response is the standard, "okay," I never know how to talk to her to see how she is REALLY doing. On top of that, I try to keep my feelings about her to myself; she has enough to worry about without me bothering her with my feelings. Still, I can see how she might take that as lack of care.

    For what it's worth, I do care. About her, and about you. So... what's going on with you / your health? How is it affecting you?

    Dad