Fibromyalgia/CFS

[Feanaro_s_Wife]

Therefore, with a condition that has no known tests (from my understanding, they basically diagnose it by ruling out lots of other stuff), how can you positively confirm what you have, and HOW CAN YOU GET TREATMENT?

This is what drives me crazy.

**It drives us all crazy, believe me!

I am ashamed to say that there were many times when going through the whole ordeal of being diagnosed (or even believed that there was a problem) that I wished I had something like cancer instead. Then at least people would understand, be compassionate, and I would get help. At that point I thought it would be easier to die of something than live with this.

malia

p.s.

there are many other accepted illnesses that are also “syndromes” (of course I can’t think of any right now) but that’s where skilled physicians come in. They make a diagnosis based on symptoms and experience. There are multiple criteria that need to be met in order to confirm a diagnosis… although a simple blood test sure would be nice!!!
**

 

[Sailor_Kenshin]

**It drives us all crazy, believe me!

I am ashamed to say that there were many times when going through the whole ordeal of being diagnosed (or even believed that there was a problem) that I wished I had something like cancer instead. Then at least people would understand, be compassionate, and I would get help. At that point I thought it would be easier to die of something than live with this.

malia

p.s.

there are many other accepted illnesses that are also “syndromes” (of course I can’t think of any right now) but that’s where skilled physicians come in. They make a diagnosis based on symptoms and experience. There are multiple criteria that need to be met in order to confirm a diagnosis… although a simple blood test sure would be nice!!!
**

Sure would---- oo, a urine test would be even nicer. I hates needles. We hates them for ever, yesss we doesss, precioussss!

Forgive me—I’m having a BAD flare-up this week.

 

[Didi]

I share the sentiment that while we would never wish our symptoms on anybody else, it sure is nice to have people who understand!

I have a friend who suffers from Crohn’s Disease, fibro and TMJ. Her friends and family are always misunderstanding her and giving her a hard time about her apartment being so messy. They can’t understand, in part, because pretty much everybody goes around saying they are “tired.” So when we use the term they think of it in their own experience. I’ve found that if I talk about being “extremely fatigued” or “having a lot of symptoms” that people are more understanding.

Feanaro’s Wife – I SOOO understand how you feel about having a more recognized disease like cancer. I have many of the symptoms of MS, but don’t have the tell-tale placques in the brain and my spinal fluid is normal. When I was going through the testing I thought, as much as I don’t want MS, it’s easier to tell people than to say “Well, I have symptoms like CFS and fibro that are linked to an overexposure of pesticides which damaged my central nervous system, immune system and liver, which led to multiple chemical senstivities and ongoing fatigue issues due to an inability for my digestive system to absorb nutrients properly… etc., etc.!”

We have some friends at Church that have had a really hard time dealing with my illness and we’ve sort of drifted apart. Another parishoner was just diagnosed with cancer and they’ve been really supportive to her (which is good for her) but makes me feel like “How come they never did that for me?” Luckily, we’ve had a lot of friends who have stuck with us and supported us and continue to do so, and for them we are so thankful!

Thanks to all of you for sharing and being supportive here! It really does mean a lot!

 

[Pug]

**I tell everyone that I am falling apart…but, if only they realized how true it was! It seems about every three to five years or so, something else goes kaput. But, nothing ever recovers. Just more things go kaput. I thank God I am still walking and able to get up in the mornings. Though, even that is getting hard at times. I feel like I am seventy or eighty and I am only twenty-five! I am supposed to be in my peak of health…
**

I tell people I feel like I’m seventy! I see we picked the same decade. When I was a child I never understood why it took “old” people so long to do things. They took forever to get out of bed, to go to the bathroom, to put on their clothes. Well, see, at least I understand now. Actually, I’m grateful for that. I’d rather have paid the price and understand and look at others with gentler eyes than not.

Didi mentioned about the messy apartment of her friend. I think if people could see into our lives, they could see the “mess” or the “falling apart” that you mention.

About needles and tests. I sooooo understand. I have RA (rheumatoid arthritis) and that does have a nice little needle test. I can’t say how grateful I was. I had been going downhill for years, doing less and less, no longer exercising, and I was sure I was just the king of lazy, a total waste of a person. One little prick and I had something that was concrete. Of course, that didn’t solve everything, but somehow it made it more bearable. Finding out several years later that Fibro was likely part of the picture didn’t really make anything more bearable. In fact, I didn’t tell my family about it. I just kept it to myself.

I think my mother found out about it a few weeks ago only, for the first time. She and I haven’t really talked about it since. Well, thanks for being here, friends!

 

[Frbrendan]

TIRED

Tired of dragging through each day with barely enough energy to prepare simple meals and eat.

Tired of feeling like a bump on a log.

Tired of watching TV, but too tired to read or do anything else.

Tired of being bored.

Tired of exhausting our meager income on health treatments that aren’t working fast enough.

Tired of always worrying about money.

Tired of watching my family continue to live their lives as I sit in the chair or lay on the couch.

Tired of always disappointing people by canceling get-togethers or meetings.

Tired of being too tired to talk on the phone yet longing for human interaction.

Tired of not being able to say to well-wishers “I feel just great!”

Tired of being a downer to everyone.

Tired of wanting to go and do things and knowing it’s just not possible.

Tired of wanting to help others in need and not being able to.

Tired of praying, wondering if it’s doing any good.

Tired of feeling like I’m 75 when I’m only 44.

Tired of watching the world go by.

Tired of feeling sorry for myself.

Tired of feeling completely useless.

Tired of looking at my messy, dirty house and not being able to do anything about it.

Tired, weary, fatigued, exhausted, spent, lethargic, overloaded, drained, worn out, empty, sluggish, useless, a shell.

**I can understand all of these things. I have suffered with fibro for several years, and I received a revelation a few weeks ago at a Pilgrimage that I was blessed to attend, that might help.

Wheat, being ground into flour to make the bread that will become the Body of Christ in the Eucharist, cannot be happy at the process. However, we all join with joy at that wheat’s final destination, and give thanks to God for the wheat, and the millstones that made it flour, etc.

For myself, I know that the pain of fibro hurts, badly, but I also realize that God’s millstones are not finished yet, and from that, I have learned to accept this affliction with rejoicing (slowly, and without too much jumping up and down, thank you) and with patience.

**

 

[Convert_in_99]

**One good thing about Fibro/CFS is that is has allowed me to share in the pains (well not fully of course) of our Lord’s suffering and passion in ways I couldn’t without it.

Like when I get the stabbing needle like pains in my head, coupled with a headache so painful I’m nauseous, dizzy, and can barely see…I unite this with the pain our Lord suffered in His crowning with thorns.

When I am so tired and I can barely move I am in so much pain, when I fall down on the job, and can barely lift myself back up, I unite this with our Lord in His carrying of His cross.

I know our sufferings are but a drop in the bucket of what Our Lord must have endured. But they are similar in some respects, and without Fibro I wouldn’t understand what a certain pain of His might have begun to feel like.

**

 

[Celeste88]

I stumbled upon this thread. I have fibro. I’ve had it since my mid 20’s and I’m in my mid 50’s now. I also suffer from a bad back, diabetes, asthma, depression, etc. and yes my memory is shot! I sometimes forget what my sister’s phone number is or what my husband’s phone number at work is, etc! These are numbers I call every day.
How do you all deal with work and fibro? I had to take an early retirement and get on disability. Also, sometimes I am so tired I can barely make it to mass on Sunday. Have you ever had to miss mass because of pain/fatigue? Life is a constant struggle with these issues, I try to put them on the back burner and concentrate on other things, its the only way you can stay sane.

 

[Feanaro_s_Wife]

How do you all deal with work and fibro? I had to take an early retirement and get on disability.

I can’t work anymore, and I am only 31. I have been on disability for the past few years and, while it is a blessing, it does not “make up” for not being able to work… I struggle with feeling “useless” and “unproductive” all the time (although less so now that I have a little one to care for …THOSE struggles are a whole other topic!).

Also, sometimes I am so tired I can barely make it to mass on Sunday. Have you ever had to miss mass because of pain/fatigue?

**That has happened to me… A LOT. It makes me sad but I also know deep down that God understands. I just do my best to live for Him each day and trust in Him…that’s all I can do.

There were also many times that I did go and would have to remain seated and I always get funny looks because I look young and healthy. If they only knew what it took for me to even get there…
**
Life is a constant struggle with these issues, I try to put them on the back burner and concentrate on other things, its the only way you can stay sane.

**That, and connecting with others who share our struggles. I was very hesitant to start this thread but now am really glad I did.

Malia**

 

[Convert_in_99]

Feanaro's Wife:

I can’t work anymore, and I am only 31. I have been on disability for the past few years and, while it is a blessing, it does not “make up” for not being able to work… I struggle with feeling “useless” and “unproductive” all the time (although less so now that I have a little one to care for …THOSE struggles are a whole other topic!).

**
This sounds just like me…except I started this when I was 23! I had no idea fibro was covered under disability!!! That would be SO very helpful. Please tell me in detail how you did it! Here or PM…it matters not. Thanks so much. This is such a blessing! God bless you for sharing this! **

 

[Feanaro_s_Wife]

**
This sounds just like me…except I started this when I was 23! I had no idea fibro was covered under disability!!! That would be SO very helpful. Please tell me in detail how you did it! Here or PM…it matters not. Thanks so much. This is such a blessing! God bless you for sharing this! **

**
I never have been able to work “productively”. I have held various part time jobs over the years in an effort to feel normal. But I could never have supported myself. Once I could no longer even work part time things got very depressing.

I didn’t know I could get disability either until I went back to the CFS society monthly meetings that I had started as a teen (I gave them up because everyone there was over 50 and I just didn’t fit in). I met a wonderful man whose wife has CFS. He decided to do his part by becoming a volunteer advocate to help us sickies go through the process of applying for help.

For me I had worked just enough to qualify for the Canada Pension Plan Disability insurance that I had paid into while working. But boy was it tough to get!!! It took about 3 years of applications and appeals to finally be approved for a whopping $500/month of assistance. Like I said, it is a total blessing, but not anything I could live off of if I was on my own.

I know that back when I was more active in online support groups there was a lot of talk of American members going through the process for SSI (I think that was the acronym) and having a very hard time. I think i recall seeing help on websites but I’d have to try and remember where… you could always try google:shrug:

Malia**

 

[whatevergirl]

**One good thing about Fibro/CFS is that is has allowed me to share in the pains (well not fully of course) of our Lord’s suffering and passion in ways I couldn’t without it.

Like when I get the stabbing needle like pains in my head, coupled with a headache so painful I’m nauseous, dizzy, and can barely see…I unite this with the pain our Lord suffered in His crowning with thorns.

When I am so tired and I can barely move I am in so much pain, when I fall down on the job, and can barely lift myself back up, I unite this with our Lord in His carrying of His cross.

I know our sufferings are but a drop in the bucket of what Our Lord must have endured. But they are similar in some respects, and without Fibro I wouldn’t understand what a certain pain of His might have begun to feel like.

**

Your last paragraph really moved me, Convert. That is a beautiful revelation to have in the midst of your pain.

 

[Convert_in_99]

**
I never have been able to work “productively”. I have held various part time jobs over the years in an effort to feel normal. But I could never have supported myself. Once I could no longer even work part time things got very depressing.

I’ve never been able to hold down a job either. I always end up getting too worn out or sick. I missed so much school I am super surprised they let me pass. My grades were always high, but in today’s school system I would have been held back for sure due to the number of days missed alone. I was able to make it through two years of college, but it was a big challenge. Would still be going if I didn’t get married. But there really isn’t a point as I can’t get the job from the degree anyways. Though hubby does want me to continue later to prove to myself I can. **
**
I didn’t know I could get disability either until I went back to the CFS society monthly meetings that I had started as a teen (I gave them up because everyone there was over 50 and I just didn’t fit in). I met a wonderful man whose wife has CFS. He decided to do his part by becoming a volunteer advocate to help us sickies go through the process of applying for help.

For me I had worked just enough to qualify for the Canada Pension Plan Disability insurance that I had paid into while working. But boy was it tough to get!!! It took about 3 years of applications and appeals to finally be approved for a whopping $500/month of assistance. Like I said, it is a total blessing, but not anything I could live off of if I was on my own.

That’s sad that is all they help with. I always feared having to live on my own…if something happened to my parents or husband. I couldn’t make it for long periods. I would get so very sick, and be worse of financially than before (due to the health care costs in addition to everything else.) I probably will still check it out. It would help me get by for a while in an emergency. **

I know that back when I was more active in online support groups there was a lot of talk of American members going through the process for SSI (I think that was the acronym) and having a very hard time. I think i recall seeing help on websites but I’d have to try and remember where… you could always try google:shrug:

Yes, there is disability here, but I think it’s only for arthritis, not Fibro. I keep forgetting you are in Canada!

Thank you so much for all your help.

 

[Convert_in_99]

Your last paragraph really moved me, Convert. That is a beautiful revelation to have in the midst of your pain.

Thank you! You really can apply all sorts of pains to the passion of Christ. It doesn’t have to be Fibro pains. It does help you to sympathize with Him, even just a little. It also helps you to unite that particular pain to His, for the good of others.

 

[whatevergirl]

When I did Atkins years ago, I remember meeting a woman who had chronic fatigue syndrome, and she went on a glutten free and yeast free diet, and it helped her immensely…her doctors were stumped.

 

[Didi]

**One good thing about Fibro/CFS is that is has allowed me to share in the pains (well not fully of course) of our Lord’s suffering and passion in ways I couldn’t without it.
Like when I get the stabbing needle like pains in my head, coupled with a headache so painful I’m nauseous, dizzy, and can barely see…I unite this with the pain our Lord suffered in His crowning with thorns.
I know our sufferings are but a drop in the bucket of what Our Lord must have endured. But they are similar in some respects, and without Fibro I wouldn’t understand what a certain pain of His might have begun to feel like. **

I do this, too! There are times when I get muscle cramps in my hands and feet. They feel kind of like a charley-horse only it’s like someone is pulling back on my muscles and ligaments and I can’t straighten them out.

One time during Eucharistic adoration I was feeling sorry for myself as I endured this pain. Then I looked up at the crucifix and saw that Jesus’ hands and feet were in the position of being “cramped” or pulled back. Then I thought, what I had was nothing compared to what He endured for me!

It took me about two years to find a smaller, affordable crucifix in which Jesus’ hands and feet were in that position. It’s now at the center of our house where I pass by it all the time.

We can learn much through redemptive suffering; offering our pains through Jesus for the redemption of souls. Sometimes when things get worse, or especially when I can’t sleep at night, I think “OK, somebody really needs the graces I can offer through my pain right now. Jesus, I offer this for whoever needs it the most at this moment.”

I remember one day as I was getting out of the shower, I was sharing my discouragement with Jesus. It was one of those days that even taking a shower was a milestone (those who suffer know what I mean!). In my mind I could see the face of our Lord Jesus looking at me, extending his hand, and asking “Do you trust me?” “Yes, Lord, I trust You,” I replied as I took His hand. “I know that You love me, and I know that You would never do anything that wasn’t for my own good, so I must trust You to take me through each day, one day at a time,” I continue. “I don’t understand Your ways, but you told us Your ways were not our ways. I don’t know how I’m going to feel tomorrow, but You told us not to worry about tomorrow, today has trouble enough of its own. I don’t like what I’m feeling, but I offer it to You.”

Wish I could always be so trusting, but with the fatigue and the brain fog, sometimes it takes awhile for me to remember to offer my suffering.

 

[LSK]

I am eternally grateful that being a Catholic teaches me that all I go through, no matter how good or bad, is worth something to someone somewhere.

Having said that, I also admit that there are times when the pain is so bad all I can think of is, “Someone better be getting out of Purgatory for this or I am going to submit a complaint form”.

I just can’t figure out where to send it…:whacky:

 

[Feanaro_s_Wife]

**I don’t know if it’s like this for you guys too, but for me the variety and unpredictability of symptoms really makes it hard to deal with life. Not knowing how I’ll feel from one day to the next, what’s going to hurt, if I’ll be able to think clearly…

Like today. I woke up with a variety of my “normal” pains (the ones I can usually count on to be ever present, just in varying degrees) but I also have an excruciating pain in my hand. Like it’s been run over by a big truck. And the last couple of days have presented a pain in my upper leg that can only be described as muscle tearing from bone.

Then there is what I call “migrating bruises”. I can go months without having this symptom but then when it flares it’s bad. The only way I can describe it is that an area of skin (anywhere on my body) will feel like a bad bruise or even a burn. It is so painful that clothing, hair, or even air hurts. But there is never a mark and they come and go so fast that it couldn’t have been a real injury. It must be some quirk of the nervous system…

Sorry if this sounds like whining, but sometimes I find whining/venting/complaining is necessary, lol. get it out of my system so I can stop feeling sorry for myself and get back to living.

Malia
**

 

[NoxSineStellae]

**

Then there is what I call “migrating bruises”. I can go months without having this symptom but then when it flares it’s bad. The only way I can describe it is that an area of skin (anywhere on my body) will feel like a bad bruise or even a burn. It is so painful that clothing, hair, or even air hurts. But there is never a mark and they come and go so fast that it couldn’t have been a real injury. It must be some quirk of the nervous system…

Malia
**

I have that too, all the time. usually a great big patch on my back, but often also my hip even face. i was told it was neurological, but of course am having a bad day, and cannot remember the term my neurologist used.

I envy those of you who can offer up your suffering and feel like it’s not so bad when you think about what Christ went through. I have more luck doing that with varying saints. I love Jesus, but when I mediate on his agony, I almost always wind up angry and resentful at God. Yes, Jesus suffered every single torment the entire human race ever did. But then it was over, and in what? A day? I don’t mean to sound disrespectful, I just can’t quite put it into proper words - Jesus was fully man but also fully God - he volunteered to take it on, knowing fully how horrible it would be, and also knowing it would be for the certain amount of hours, and at the end, he’d be in heaven.

I’m JEALOUS of Jesus’s suffering. It ENDED. He endured humilation and disbelief and excrucitating pain, but it ENDED. This just goes ON AND ON AND ON and NEVER STOPS for YEARS AND YEARS, and never WILL stop until I am dead, and even then, I will be burning in hell, so it will continue for ETERNITY.

 

[LittleDeb]

I envy those of you who can offer up your suffering and feel like it’s not so bad when you think about what Christ went through. I have more luck doing that with varying saints. I love Jesus, but when I mediate on his agony, I almost always wind up angry and resentful at God. Yes, Jesus suffered every single torment the entire human race ever did. But then it was over, and in what? A day? I don’t mean to sound disrespectful, I just can’t quite put it into proper words - Jesus was fully man but also fully God - he volunteered to take it on, knowing fully how horrible it would be, and also knowing it would be for the certain amount of hours, and at the end, he’d be in heaven.

I’m JEALOUS of Jesus’s suffering. It ENDED. He endured humilation and disbelief and excrucitating pain, but it ENDED. This just goes ON AND ON AND ON and NEVER STOPS for YEARS AND YEARS, and never WILL stop until I am dead, and even then, I will be burning in hell, so it will continue for ETERNITY.

I understand exactly where you are here, so don’t feel bad about it. I have had those same thoughts. Just remember, this isn’t about “going to hell” because of how we feel. It is about being purified here and now to be cleansed for heaven. It has often been said that, for some of us, purgatory begins here.

 

[Pug]

I’m JEALOUS of Jesus’s suffering. It ENDED. He endured humilation and disbelief and excrucitating pain, but it ENDED. This just goes ON AND ON AND ON and NEVER STOPS for YEARS AND YEARS, and never WILL stop until I am dead, and even then, I will be burning in hell, so it will continue for ETERNITY.

I understand. Sometimes I just pray for the second coming and I don’t consciously care if I will be in heaven or hell, and I only hope a little. God loves us very much. For me, it helps to have faith in his love.

I waddled to work in pain today, sort of hobbling. As I pulled open the door to the building, I said I don’t believe that this is helping anyone, that I have nothing to offer up, that I am not participating in the cross or anything by this pain. I couldn’t offer it up because I couldn’t believe in that moment. It’s hard. Enduring pain is so non-concrete. If a healthy person walks a mile and someone gets water who was thirsty at the end, I can see that. It is concrete.

Anyway, here is a CCC paragraph that I read and have difficulty feeling it has anything to do with me:

**618 **The cross is the unique sacrifice of Christ, the “one mediator between God and men”. But because in his incarnate divine person he has in some way united himself to every man, “the possibility of being made partners, in a way known to God, in the paschal mystery” is offered to all men. He calls his disciples to “take up [their] cross and follow [him]”, for “Christ also suffered for [us], leaving [us] an example so that [we] should follow in his steps.” In fact Jesus desires to associate with his redeeming sacrifice those who were to be its first beneficiaries. This is achieved supremely in the case of his mother, who was associated more intimately than any other person in the mystery of his redemptive suffering. Apart from the cross there is no other ladder by which we may get to heaven.