Fibromyalgia/CFS

[NoxSineStellae]

Thank you both - I apologize for my outburst Yesterday was really bad day, pain-wise, and our family is going through a lot (death of a baby in the extended family, who suffered for 5 months first, topped it all off). I haven’t snapped like that in awhile. I feel much more centered today and optimistic, though I’m starting to realize I’m giving up hope on ever getting better. This is my life, for however many more years, and I just have to make the most of it.

 

[LittleDeb]

An elderly friend of mine, who died recently, said something that has stayed with me. She was nearly completely blind through most of her adult life. She found something in her life that kept her from being bitter. She always prayed for healing in her life. “But,” she told me, “healing doesn’t always mean a cure.”

How true.

 

[NoxSineStellae]

An elderly friend of mine, who died recently, said something that has stayed with me. She was nearly completely blind through most of her adult life. She found something in her life that kept her from being bitter. She always prayed for healing in her life. “But,” she told me, “healing doesn’t always mean a cure.”

How true.

I’m so afraid that if I accept that being ill forever is God’s will for me, it will be like giving up I’ve fought so hard, for so long to get better. I’ve had to convince so many people this is real. I feel like if I accept it, it negates all my struggles so far

 

[Feanaro_s_Wife]

I’m so afraid that if I accept that being ill forever is God’s will for me, it will be like giving up I’ve fought so hard, for so long to get better. I’ve had to convince so many people this is real. I feel like if I accept it, it negates all my struggles so far

**I know exactly how you feel. I spent the first 10 or 12 years feeling like that. But once I finally accepted it, things got so much more peaceful (notice how I didn’t say easier).

Acceptance is not about giving up. Acceptance does not equal defeat. It just means that it becomes easier to recognize what is changeable, and what isn’t. I love the serenity prayer especially.

It is easier to fight when we are focused on a battle that we could potentially win. Fighting it* all ***is a lose-lose situation.

This is how I am. I pray for healing. I pray for change. BUT I live today as today. I fight and I accept. Mostly, i just live.

Malia

 

[Sailor_Kenshin]

Why is there no help for our ‘syndrome?’ You’d think medical science could come up with a few things that would make life a little easier!

 

[Feanaro_s_Wife]

Why is there no help for our ‘syndrome?’ You’d think medical science could come up with a few things that would make life a little easier!

**Finally an easy question

MONEY

If there is no money for research then there is no help. When is the last time you saw mass ad campaigns to raise money and awareness of CFS and Fibro? That’s right…never.

Malia
**

 

[Sailor_Kenshin]

Maybe we need to start one!

 

[Didi]

I’m so afraid that if I accept that being ill forever is God’s will for me, it will be like giving up I’ve fought so hard, for so long to get better. I’ve had to convince so many people this is real. I feel like if I accept it, it negates all my struggles so far

I know how you feel! There have been a couple times in my life where I’ve come to be able to pray that I would like to be healed physically, but if I need these ailments to remind me to be dependent upon God, I would rather have them and stay close to God than be healed and move away from Him.

I am reading Scott Hahn’s book on the Sacraments - “Swear to God” - in which he says about anointing of the sick: “The sacrament always heals the way Christ intends. Sometimes it brings about a physical cure or relief of symptoms. Most times it heals by empowering the sick to suffer like Christ.” (pg. 50)

I have had so many people praying for me over the last few years, and I know many of them have prayed for healing. Sometimes I feel like I’m disappointing them because I’m not physically healed. There are others who are closer to me, who understand the spiritual healing I have experienced and share in my joy of that healing.

It is a difficult balance and, I fear, one we will struggle with our entire lives on earth. But we are not alone. Jesus is right with us, helping us with our burdens, carrying the heavy part for us (even though our own part feels pretty heavy at times!). And we have our Heavenly Father watching over us and sending us His Holy Spirit to strengthen us where we need it. We have our Mother Mary praying for us, along with the angels and saints. And we have friends like all of you on the forums who understand and support us.

Thank you, Lord!

 

[LittleDeb]

Just a quick bump to the thread and a thank you for prayers. I am praying for all of you.

So far I haven’t had a flareup even though I have been under a lot of stress. I thank you all in this thread. Because of the reminders, I have been taking better care of myself during this stressful time. I am nursing a very loud 2 month old, sleeping on the couch at night so she doesn’t keep everyone awake, AND doing some work on our remodeling job during the day. Alena will have her own room soon so she can yell all she wants.

God bless you all. Thanks for the reminders and support!

 

[TraderTif]

I just wanted to wish you all a Happy Thanksgiving (even if you’re not American, and not celebrating it today, lol.)

And you know…today, I’m feeling thankful for CFS…in a way.

I mean, I’m not thankful for the actual illness, but I’m thankful for some of the ways that my life has been shaped as a result.

-I don’t think I would have such a good relationship with Jesus if I was healthy all the time. Being sick and unable to do the things that I want to do makes me remember that I am actually dependent on God.

-I didn’t appreciate my faith, untile suddenly I started having anxiety attacks and I was unable to go to mass for 4 years. But I was finally able to start going again a few months ago. I went to Thanksgiving mass today…and it was BEAUTIFUL!

-My brain is too tired to think of any other points to add to this list…but you get the idea.

 

[Feanaro_s_Wife]

I just wanted to wish you all a Happy Thanksgiving (even if you’re not American, and not celebrating it today, lol.)

And you know…today, I’m feeling thankful for CFS…in a way.

I mean, I’m not thankful for the actual illness, but I’m thankful for some of the ways that my life has been shaped as a result.

-I don’t think I would have such a good relationship with Jesus if I was healthy all the time. Being sick and unable to do the things that I want to do makes me remember that I am actually dependent on God.

-I didn’t appreciate my faith, untile suddenly I started having anxiety attacks and I was unable to go to mass for 4 years. But I was finally able to start going again a few months ago. I went to Thanksgiving mass today…and it was BEAUTIFUL!

-My brain is too tired to think of any other points to add to this list…but you get the idea.

Happy thanksgiving and what a nice post

 

[Feanaro_s_Wife]

**Today is a bad day already. I am tired (DD woke us up at 5am) and in a lot of pain. Physically I am drained and emotionally I am empty. I feel lonely and scared for the future. Maybe once the sun comes up I’ll be able to have a different perspective but right now I feel as dark inside as it is outside

Malia**

 

[Pug]

**Today is a bad day already. I am tired (DD woke us up at 5am) and in a lot of pain. Physically I am drained and emotionally I am empty. I feel lonely and scared for the future. Maybe once the sun comes up I’ll be able to have a different perspective but right now I feel as dark inside as it is outside

Malia**

Less sleep is always bad. The sun is up now, here. I hope the world is brighter now.
:hug3:

 

[Feanaro_s_Wife]

Less sleep is always bad. The sun is up now, here. I hope the world is brighter now.
:hug3:

**Still dark… no better yet…just more tired. And now the no-sleep-headache is kicking in. And hubby just left for work so I’m officially the responsible adult in the house now

Malia**

 

[Celeste88]

I’ve been through the same thing so many times. I hope you can go back to bed and get some more sleep. Or…have some coffee now (it may help the headache), stay awake for a while and try to take a nap in the afternoon. You definetely need more sleep. Do you take anything to help you sleep? I used to take trazadone (you can get it in generic form), but now I take something for migraines at bedtime that makes me drowsy. Also, there is a new med out called Lyrica that helps fibro, maybe you can ask your doctor abour it.

 

[Sailor_Kenshin]

I’ve been through the same thing so many times. I hope you can go back to bed and get some more sleep. Or…have some coffee now (it may help the headache), stay awake for a while and try to take a nap in the afternoon. You definetely need more sleep. Do you take anything to help you sleep? I used to take trazadone (you can get it in generic form), but now I take something for migraines at bedtime that makes me drowsy. Also, there is a new med out called Lyrica that helps fibro, maybe you can ask your doctor abour it.

Lyrica? Sounds interesting.

 

[Feanaro_s_Wife]

I’ve been through the same thing so many times. I hope you can go back to bed and get some more sleep. Or…have some coffee now (it may help the headache), stay awake for a while and try to take a nap in the afternoon. You definetely need more sleep. Do you take anything to help you sleep? I used to take trazadone (you can get it in generic form), but now I take something for migraines at bedtime that makes me drowsy. Also, there is a new med out called Lyrica that helps fibro, maybe you can ask your doctor abour it.

**Oh boy how I need a daily nap…now if only I could get my DD to cooperate. I am a terrible mommy. I have been falling asleep while with her. I am so tired.

As for meds, I don’t react well to what I have tried so that makes me very hesitant to try anything new…plus, I’m still breastfeeding so I really don’t want anything. And if my sleep doesn’t get disturbed by her crying or hubby snoring, I do ok…

Malia**

 

[earwaldbauer]

dear friends, I was diagnosed with fibromyalgia 10 years ago in the emergency room; I screamed in pain when the doctor gently took hold of my elbow! I recently read a Bible verse in the Mansfield Ohio News Journal that saved my life!: “You preserve my life and I am devoted to You. You are my God. You will save Your servant who trusts in You.” Psalm 86:2. One other thing that helps me when I need to see my doctor at the clinic who states emphatically, “I don’t treat fibromyalgia!” is printing out and filling in a patient profile found at realage.com/RALong/planner/SmartPatient.aspx?p=1. Thanks to my psychiatrist who prescribed Lyrica for me and Thanks be to the Sacred Heart who comforts me in His opened side! Elizabeth ( which means God keeps His promises.)

 

[Celeste88]

**Oh boy how I need a daily nap…now if only I could get my DD to cooperate. I am a terrible mommy. I have been falling asleep while with her. I am so tired.

As for meds, I don’t react well to what I have tried so that makes me very hesitant to try anything new…plus, I’m still breastfeeding so I really don’t want anything. And if my sleep doesn’t get disturbed by her crying or hubby snoring, I do ok…

Malia**

Is there any chance you can ask a relative (mom, sis) to take your little DD out some afternoons and give you a break? Then you can lay down for a while. OR can your DH wake up some nights and take care of DD while you snooze? You won’t wake up if you have earplugs in!

 

[Feanaro_s_Wife]

Is there any chance you can ask a relative (mom, sis) to take your little DD out some afternoons and give you a break? Then you can lay down for a while. OR can your DH wake up some nights and take care of DD while you snooze? You won’t wake up if you have earplugs in!

**DD is still breastfeeding and isn’t away from me for long yet. As for the nights, once she’s asleep she usually stays asleep. If she cries we just listen and if she’s not in trouble or pain she falls back asleep. If she wakes up too early (like 5am) she wants to be breastfed so hubby can’t do that, lol.

Weekends are good because when she wakes up I breastfeed her and then hubby takes her and lets me sleep another hour or two, like today. It’s amazing the difference the extra sleep makes. I don’t feel wonderful but I’m not a zombie either…

hopefully I’ll get some extra sleep tomorrow too because I have a rough week ahead of me. Hubby is going to be gone for 2 full days and I don’t know how I’ll manage alone. He does the majority of stuff around here…just thinking about getting DD to sleep and then into bed (physically) is scaring me…

Malia
**