So I have this Chronic Fatigue Syndrome and Fibromyalgia... blah, blah, blah. I've been "diagnosed" for 2 months but suffereing almost a year. I am on treatment-probably some of the best on the planet. I am blessed.
Yet sometimes I have a tendency to not necessarily think "why me," but more like "how do I get out of bed, off the couch, not take the ultram, get to the gym?" At this point in my life I have no idea HOW to do these things (beyond taking the crazy amount of medicines I'm on). I do pray about it. Is God sending me an answer I don't see or understand? Today I got a forward from my grandmother...it made me think. It was from an interview by Rick Warren (Purpose Driven Life)...one quote hit home....
"If you focus on your problems, you're going into
self-centeredness,'which is my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others."
I want to do this (get off my butt pretty much). But I'm stuck. It's not so much that I'm wallowing it...I just want to know HOW I get out of the self-centerdness and my pain. HOW do I get past it? Please help. Please tell me how you did it.
Thanks-Hil
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Question...HOW do I do this? Please help!
- By Hil323
- Posted January 2, 2009 at 6:20 pm · 20 replies
- Shared with the public
Explore topics in this journal entry and replies:
Exercise Chronic pain Chronic fatigue syndrome Anxiety Polymyalgia rheumatica Degenerative disc disease Prednisone Lupus Fibromyalgia Carboplatin Acupuncture Avastin Ultram Pain Depression Paralysis
20 replies
- Oldest first
- Newest first
- By laughingnikki
- Posted January 2, 2009 at 8:38 pm
- Report post
I think that you have to make the decision, one step at a time. Do one thing, today, two things tomorrow. Maybe start with a Bible study, I think that would help you refocus.
Sometimes the first step is the hardest.
God Bless You,
Nikki
- By abbaschild
- Posted January 2, 2009 at 9:36 pm
- Report post
One thing that helps me to focus is I listen to the radio station that Billy Graham started...106.9 The Light...you must be able to get it in Hendersonville....I'm from upstate SC...I love it..the music is so uplifting, upbeat and the messages are really inspiring, and real! When you read your Bible, ask the Lord to show you what He wants you to do...that's where I get my guidance. You've already taken the first step by asking for help! The second step is to get moving...sometimes that's the hardest part of the process...just to get moving, but you can do it!
- By Hil323
- Posted January 2, 2009 at 10:42 pm
- Report post
I think I know that God wants me to get better. I KNOW he does. Maybe I didn't put it how I meant it. HOW do I get past the pain to get up and do His Will?
- By abbaschild
- Posted January 2, 2009 at 11:14 pm
- Report post
What I do is I eat mostly veggies and fruits and take vitamins to feed my body the nutrients it needs. Limit your caffein intake. I also drink lots of water. That's important to give your body what it needs to function better.
As far as exercise goes and going to the gym...you have a problem where too much physical activity isn't good for you, but on the other hand, too much rest can make you weaker. Maybe just starting off by taking a walk each day will get the oxygen moving thru your system and then you can slowly build up your stamina over time. Or maybe go to see a physical therapist who can start you on a exercise program because the statistics show that gradually increasing your exercise can improve your symptoms.
Each of us have our own mountains to climb, but you just have to determine that you're not going to quit but one step at a time can get you over the top to the other side. I'll pray the Lord shows you what's next.
- By Jennali
- Posted January 2, 2009 at 11:21 pm
- Report post
I have heard a suggestion over the years about various negative emotions. Or maybe not so much negative, but not too useful. The deal is that you allow yourself a certain amount of time to wallow if you need to, cry if you need to, scream and cuss and ask why, then be done. At least for then. Maybe decide how much time you want to give over to that, do it, and then tell yourself you are going to take a baby step. I think having a plan is more likely to result in success than if you just tell yourself "today I'll do better", you know? Maybe tomorrow say "Okay, I am going to allow myself 30 minutes to feel bad, Then I am going to get up and take a shower and go see my neighbor." Or whatever. Maybe the next day you can do more. Baby steps.
Are you by any chance taking an antidepressant? A lot of what you are describing sounds like me when my depression is bad. Some antidepressants even function as pain relievers.
I have also heard that acupuncture can work wonders for your kind of pain. Just another something to consider. Maybe some guided imagery tapes? Since you are Christian, perhaps just some prayer in the morning to help you ?
- By Hil323
- Posted January 3, 2009 at 1:29 am
- Report post
Yes, I am on an antidepressent. I am talking with my Psychiatrist later this month about a possible change to Cymbalta which is the one most recommended for pain. Thank you to everyone so far for your ideas, I appreciate it!
- By momanderson920
- Posted January 3, 2009 at 5:00 am
- Report post
I have been very depressed lately and focused on some new symptoms post chemo that make me think I may be recurring. But even if I move up my oncologist appt. I need to quit obscessing over it as it just makes the whole situation worse. For me, if I can get out with others, friends, etc. I can lose myself. I have not done that in ages. Are you like that....being around other people takes your mind off yourself? If so, maybe find some friends to hang out with or call on the phone. I almost wish someone would call me and tell me THEIR problems so I can quit focusing on my own. I have made a New Years resolution to reconnect with friends so I can get my mind off my physical problems. I hope you can find a solution that works for you. I know how depressing and anxiety provoking it can be, plus how painful if you are hurting.
- By KateG
- Posted January 3, 2009 at 9:14 am
- Report post
it's hard not to be focused on your pain when it's slapping you in the face every day. a lot of days I just walk through it and do my best. any activity like cleaning or doing laundry really sets me back and is painful, heck doing the dishes is painful. i guess i've come to accept that pain will always be there. My body is damaged, sometimes i say broken, and i need to be kind to it. believe me, i'm not always kind. i push my body beyond its limitations all the time. and i suffer because of it. I'm finally learning what i can handle and stop when i've reached that limit. unfortunately i have to break things up - i used to be able to do everything in a day - clean my entire apartment, go to the grocery store, etc. Now I have to do one room and rest. It's a bummer but acceptance helps a lot. Kate.
I'm going to send you a friend request.
- By cjs08
- Posted January 3, 2009 at 10:03 am
- Report post
For me, getting out and helping another does amazing things for me. (I doubt though that I've ever been where you are so I may not understand)
Ask for Clarity of thought when you pray. Ask God to make it really obvious what you should do or where to begin.
If you can, go some place that is full of natural beauty. (national park maybe?)
- By gg1
- Posted January 3, 2009 at 10:59 am
- Report post
Gardening helps me alot and it is where I also feel closest to God. Some days I just sit in the sun and pray.
- By kla
- Posted January 3, 2009 at 12:12 pm
- Report post
I don't know if this is going to help but, I've been listening to & reading somethings that all seem to point to the same thing.This includes Bible,meditation and science.
We are basically a trifold cord a spiritual,physical & mental being . When one of those gets out of balance we lose our ability to function as full beings. The weakest link seems to be our mental being it just keeps us off balance.If we are depressed we are unable to keep our physical body and our spiritual body functioning.The three things that seem to come up are exercise,diet & misdirection or redirection.So here's the basic exercise even if it's sitting in a chair and lifting cans of beans or taking short walks. Increase the good fats fish oil omega 3s and leafy green veggies When bad thoughts hit find good ones,laugh.find a joke book for your bedside table or a tape or dvd that makes you laugh. This evidently give your endorphins a kick in the butt , And they are the bodies pain kickers and depression kickers.So maybe just getting out of bed will be easier if you start by laughing.
I am infamous for having a very high pain tolerance and low blood pressure . I am also infamous for having a very weird sense of humor. I am beginning to think they may in some way be related.
A for instance I drew smiley faces on my bald head and killroy was here when I knew the wig would have to come off for some procedure or another.And treasure maps for the Drs. for surgical procedures. This did a couple of things it made me an individual in a sometimes mechanical world and it made them and me laugh. It's hard to have negative thoughts when you're laughing.
I also think my animals help they love me completely without judgement .So listening to the birds sing lifts my heart, petting the cat and listening to his purr relaxes me, the dogs taking a walk and knowing they don't care if it's twenty steps or a mile gets me up and out.If you don't have animals get a friend to bring one to visit.I think you'd be amazed how much they help.
I hope these help. God Bless and Laugh
- By Hil323
- Posted January 3, 2009 at 1:16 pm
- Report post
Wow...some of you are facing illnesses that are much more daunting than mine. Thank you so much for your ideas. God Bless You! One thing that is REALLY hard for me is thinking about all the things I used to do. I can handle most of them, except the outdoor things. I felt so close to God when I got to the top of mountain. I loved rock climbing, camping. Right now I can barely walk a few blocks. It's ridiculous. I so miss hiking, and I look out my window everyday and see a mountain I once scaled. I feel so down when I see it and so want to be able to do it again. It actually brings tears to my eyes to think about it.
As for friends, I have to live with my parents now...most of my close friends that I'd feel comfortable talking about this live far away or want to go out and party (something I've never been into). One close friend is trying to get pregnant, the other is pregnant after two miscarriages-normally I could talk to her, but right now is a precarious time and I don't want to project my problems to her. My problem, to most of them, doesn't seem important--at least from what I can tell. The other close friend that is in the area is wrapped up in her life and just doesn't do the "emotional" stuff. It's like everyone is getting engaged, married, and having babies (we're 28 and 29 for the most part) and I'm spinning my wheels with this illness. I just have no one to talk to. When I talk to my family, they tell me to just stop wallowing in it. I guess it's the reason that I joined these groups. Thanks so much for just talking to me and giving me suggestions.
- By Shearaw
- Posted January 3, 2009 at 2:53 pm
- Report post
Another thing that helped me get back on the path to fitness was starting out with yoga (just once a week at first), then adding in some weekly tai chi. Since I am older, and was on Avastin, I had to be very careful about injuries, as Avastin inhibits healing. Over the course of a year I progressed with both yoga and tai chi. Next I added in cardio and weight classes. It took me over 18 months to reach my goal of a complete physical fitness program, but the results are happening. My ultimate goal was to become fit as a means to minimizing the effects of subsequent chemo, whenever my OVCA might recur. Well, I am currently back on carboplatin for a small recurrence. And so far after my first cycle, I am feeling very well!
Good luck to you.
Sheara
- By Carol915
- Posted January 3, 2009 at 11:37 pm
- Report post
I certainly can understand your chronic illness and always feeling exhausted. Your pain has alot to do with that. Do you think you can go onto steroids (prednisone) to control the pain. My husband has polymyalgia rheumatica which is somewhat similar to you illness. His doctor started him on daily steroids and will decrease his meds over time. For someone who could not roll over in bed nor could cut a piece of meat in his dinner plate-- found instant relief the first day he started taking the pill. After that, he was able to get more peaceful and restful sleep. Good luck to you and I hope this helps.
- By verlinda
- Posted January 4, 2009 at 1:33 am
- Report post
Hil,
It sounds as if this is a fairly recent diagnosis. I was diagnosed with fibromyalgia 13 years ago after 5 years of having doctors tell me it was my age, depression, becoming a mom at age 41, etc. As soon as the rheumatologist saw me, she knew what was going on.
I would guess you went through a somewhat similar experience. One thing that's very important to realize is that you DO have a medical condition. Most fibro patients have had a lot guilt heaped on them before they are identified, so there may be some justifiable anger there about the times your symptoms were ignored or downplayed. Ask God to help you remember, forgive and get past those times.
One of the best pieces of advice I was given was to keep a diary of every single medication, including the dosage, that you try. You'll probably be given so many different ones in an attempt to help symptoms that you'll forget the details.
Before you start ANY exercise program, ask your doctor to be very specific about exactly how much you should start with. Fitness instructors, my family doctor and p.e. teachers at the school where I taught told me it was important to exercise regardless of the pain. My rheumatologist said absolutely not, to start small. I'd been walking 2-3 miles a day (I've always been a couch potato.), so I decided to try half a mile and hurt unbelievably. I mentioned this at my next visit, and the rheumatologist said, "No, no. I meant like 1/10 of a mile the first week, then build back up from there. Otherwise, you'll hurt so much you'll never exercise!"
Another thing I found after a few months was that I was taking so many medications for the various symptoms that there were interactions the doctors didn't know about. My pharmacist was invaluable.
Hendersonville is one of the most beautiful spots in the country. I treasure the summer I spent as a camp counselor in Brevard! Try contacting some of the national and state parks and asking about handicapped trails. These will put you in touch with God's creation, but allow you to use less energy as you learn to cope with these conditions. That doesn't mean it's all you'll ever be able to do; it just might be a way to let you work up to hiking again.
There is a national fibromyalgia support group. I don't remember their website address, but you might want to check them out.
Last, I very rarely have problems with fibro now. Other than antidepressants, which I'm currently trying to do without, I don't haven't taken medication for it for years. I think my last major flare-up was seven years ago.
Please let me know if I can help in any way.
You're a brave young woman and will overcome this! You're in my prayers.
Blessings,
Verlinda
- By Hil323
- Posted January 4, 2009 at 11:29 am
- Report post
Verlinda,
Where were you a counselor at? I was a counselor one summer at Camp Greenville. I actually live closer to Brevard than Hendersonville.
Hil
- By DTMEDIC
- Posted January 4, 2009 at 9:14 pm
- Report post
I have suffered for years with some pretty significant joint pain and radicular pain from chronic degenerative disc disease of the spine. As a career Paramedic, this affects my job/life's work. It's terribly frustrating, but I think I can relate, just a little to what you're experiencing.
I have found that the more I focus on what's wrong with me, what hurts...what treatment works, what doesn't...the worse I feel. If I absorb myself in other activities (even non-physical ones) I feel better. I have started sewing/quilting as a hobby, I am still working full-time and since Christmas have been loving my Wii and Wii Fit.
There are surely times when the pain gets worse and I have to give in to it for a day or two. But I finally decided that I needed to accept the fact that I would probably always have pain...every day; that I would probably not enjoy pain-free days very often...so I would do what I could with medication & therapy, but once I quit looking for the magic-pill and learned to live with it as part of ME, I have been managing much better.
One of my best friends has Lupus, which causes terrible flare-ups of debilitating joint/muscle pain. Since she began babysitting my infant neice, the transformation in her has been miraculous! She loves what she is doing. It gives her a reason to get up and get moving every day...and she is happier than I have seen her in years. Oh, she still has pain and flare-ups that set her back occasionally...but they are fewer and less severe than before. Most importantly her sense of self and joy of living is back. Her disease, while part of her life is no longer defining her existence.
So...I said all that to say this. I agree that shifting our focus from ourselves to others and other things enables us to regain our lives. Take little baby-steps, but start reclaiming your life a little bit every day. If you are not on an anti-depressant, talk to your doctor about one. Cymbalta does well and has been shown to be especially helpful with depression caused by chronic pain conditions. Your fibromyalgia & CFS probably isn't going to just go away. It is part of you, but is isn't ALL of you. :-)
Good Luck!
- By devnic
- Posted January 5, 2009 at 8:54 am
- Report post
It's very hard to focus on something but yourself when you are tired and in constant pain. You can make it worse by not focusing on yourself. You need rest. I developed fibro by having two babies a year apart and then not sleeping and not caring for myself at all. Almost 5 years later, I have found a new help for those with chronic pain. See www.painmd.com and read about occipital neuromodulation. This device has allowed me to get some REAL sleep, reduce my pain level and help relieve my major depression. It's nothing short of a miracle. All my best to you.
- By tiredone
- Posted February 9, 2009 at 5:47 pm
- Report post
Hi,
It sounds to me like you are still grieving the loss of the "former you". I went through that over the last few years and am somewhat still going through it. It angers me that I can't be the multi-tasking working Mother that I once was. I went to a therapist and after answering her questions about why I was depressed she stated "So, your identity if wrapped up in working". I was really shocked because I thought I really loved working at church with the kids and I loved being a Mother but in reality I loved to work the most and that was stripped from me. So she told me to find another identity.
I watch my granddaughter for a few hours a day and that has helped me immensely. I also have started a devotional for our church. That way I am still giving out. I think that once you get over the grieiving part, it is easier to deal with the pain, loss of freedom, forgetfulness, etc., etc.
I hope this helps.
God bless
- By Nina372
- Posted March 5, 2009 at 12:38 am
- Report post
Hello Hil323,
I know exactly how you feel! It is so hard not to focus on your illness when you have it 24/7 and it is keeping you in bed for most if not the whole day.
I used to be very active I loved sports and out door activities. I live in a family of missionaries, my dad is a pastor, my brother is a missionary to Panama and China and my twin sister a missionary to Romania.
For the longest time my deepest heart desire was to go to Thailand and still is. So I planed on going and started doing fund raising to go for a month in the summer of 2005, but a couple of days before a fund raiser I caught the flu really bad, little did I know that it destroyed part of my autonomic system and nervous system causing paralysis and many other problems.
I was in the hospital for over a month and all I could think about was I was supposed to be on my way to Thailand. I started to become angry with God one night and was cursing him with all the life I had in me that night I told him if you want me to witness to the Buddhist people then send one to me right now and I will do your will, right at that moment a nurse walked in and noticed I was very upset and was crying she tried to comfort me as best she could with her religious beliefs and I soon realized she was not a Christian but a Buddhist! So I made a new commitment to God and told him I would allow him to use me in a wheel chair or sick in bed. As soon as I allowed God to use my circumstances I found it very easy not to grieve for the old life I used to have and it became easier and easier not to wallow in how I was feeling.
Any way I hope im not rambling on and on, but my point is dedicate your situation for God to use and in due time he will make it easier not to constantly think about your current situation.
I am now up and walking and have recovered from my paralysis and will hopefully make it to Thailand soon.
As for what I use to treat my CFS complex B vitamins do help some.
I hope this was encouraging.
Nina <><
Add to the discussion