Fibromyalgia/CFS

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Feanaro_s_Wife

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**I know that several people have mentioned that they also suffer from one or both of these illnesses or have a family member who does and have reached out to support and encourage me. But my memory is horrible and the only one I am sure of is ConvertIn99. So, if you could, please PM me to refresh my memory and take you up on offers to chat etc!

malia**
 
I don’t know if I’ve mentioned it much here on these forums…but I have had CFS since I was 8 (so that’s almost 20 years now.)

And, while I don’t personally seem to have Fibro…I’ve got some relatives who have recently developed it.
 
**I have BOTH! (But it looks as though you already knew that) 😉 **

Fibromyalgia started when I was 10.

CFS started sometime in Junior High.

**My PM is always open, and venting is fine with me! 🙂 **

**I know these things hurt! 😦 **
 
**Thanks so far to everyone who has PM’d me. I was very active in an online support group before we had Lily and I miss speaking with people who truly understand. And having people who understand these illnesses AND are Catholic is a huge bonus.

Malia

p.s feel free to actually post on this thread too. Who knows who it might help?
**
 
May I stick my nose in here for a second? Two of my SIL’s have been diagnosed with fibromyalgia/CFS and another has MS. I had heard that these may be related (auto-immune problem). Is this true? Is this hereditary? Does it affect women more than men? Has this surfaced recently or just been given a name by the medical community?

I would love to know more because I would like to be more of a support and be more understanding. I think that sometimes they feel unsupported because nobody seems to understand how debilitating this is. And I have to admit that it is hard, especially when it is unseen to other people’s eyes. I can’t tell by looking at them when they are having flare-ups. Any info, insight, or advice would be greatly appreciated.

(This may be a topic for a new thread so I don’t want to hijack this one. I just thought that maybe while you all were talking you could help us Looky-Lou’s understand what it is like to live with fibromyalgia/CFS.)
 
**fmaware.org for starters… I’m short on time right now but I don’t mind your inquiry at all!!! Hopefully we will be of some help to you:)

Malia**
 
**go into topics A-Z and choose “invisible disorders”. Read the article:

Why seeing is not always believing

very good insight and may help understand a friend or loved one suffering with a chronic “invisible” illness

Malia**
 
**FM-CFS.ca seems to have a lot of good info and I like it because it addresses both conditions.

Not many people know much about either one or how treatments can conflict with one another. For example, exercise (light and easy) is often recommended for fibro and does help. But exercise can exacerbate the fatigue of CFS and make symptoms much worse. It is hard enough to have one condition but having both is really complicated!

Malia
**
 
I have chronic illness issues that are similar to fibro, cfs and ms caused by on overexposure to pesticides that affected my liver, immune and nervous systems. Going on 7 years now. It is difficult. God has allowed me to help others at times, but I never feel like it’s enough. I always want to be able to do more and just can’t. The fatigue is the worst. I wrote this awhile back to try to explain the fatigue to someone else.

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 have fibromyalgia and CFS. Add that to atrial fib and disabling asthma. Sometimes I feel like a walking pharmacy! 😦

The only OTC med that gives me ANY relief, is Aleve. It takes the edge off the pain, however, because I take Coumadin (for the a-fib) I can’t take Aleve.

About all that is left is prayer!
 
MaryD7 said:
And I have to admit that it is hard, especially when it is unseen to other people’s eyes. I can’t tell by looking at them when they are having flare-ups. Any info, insight, or advice would be greatly appreciated.
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First of all, thank you for wanting to learn more!

I have a good friend with MS and many of our symptoms are similar. We joke about how sometimes when we feel really bad, people say something like “Wow, you look good. You must be feeling better,” or “Hope you’re feeling as good as you look!” Then there are days when we are feeling better, but someone will say “Gosh you don’t look so good, must be a hard day, huh?!”

It is hard because our symptoms are “unseen.” I have told her that we are lucky at least nobody has said to us yet “Gee, I hope you feel better than you look…!”

Some days we want to talk about how we feel, other days it’s just too hard. I’ve learned to follow up a “How are you?” with “How are you really, or don’t you want to talk about it right now?”

I’m getting better at reading people’s eyes. Sometimes I look in the mirror and see the pain in my own eyes and I’ve learned to recognize it in others as well.

I think one of the hardest things is that you don’t want to be a sad sack, you want so badly to be able to say “Hey, I feel really great!” Most of the time I just say “I’m hangin’ in there” or “today is not one of my better days” or “today is a little better than yesterday.”
 
I went to those websites and read the description of what fibromyalgia feels like. Yikes! I didn’t realize that it was shooting pains. I thought it was more of a dull constant ache … like you get when you have a virus or exercise a lot.

I have to admit that it sounds rather bizarre. I mean, why all of a sudden would a person’s body start reacting like this? It almost sounds as if there’s a breakdown of the body’s defense system and this disease takes hold.

I’m going to see my SIL this weekend and I will show her this thread. I do now understand that she is doing things that will control the symptons so she can function. Sleep is very important to her. I’m not sure what she does for pain but I do know that she is going to a doctor and getting a vitamin cocktail shot that seems to be helping immensely.

I do have a couple of other questions:

Does this flare up all the time or is it like hanging around waiting to strike? Let’s take a period of a month: What percentage of time is spent in extreme pain? Does it depend on what is going on in your life (like stress, physical activity level) or does it just flare up out of no where?
 
I’m not sure I have fibro—or what CFS is, but I know I was diagnosed with myofascial something-or-other. And I never seem to have enough energy.

Drugs don’t work on the pain at all. And it’s beginning to worsen my already-mean-and-repellent personality. 😉

Mostly I just grit my teeth and do whatever I can push myself to do.
 
I was diagnosed with both many years ago. One of the problems that seem to come with CFS is IBS - lots of fun, let me tell ya.

I recently - like two days ago - read an online news alert on MSN.com about recent links between CFS and a stomache virus that is normally shaken off by the majority of the population but may be the underlying cause of CFS; in other words, we get the virus and it never really goes away.

It got me to thinking - I was diagnosed with CFS and Fibro years ago after contracting a horrible flu that was making its way through the area. It was a really bad one. At the time, of course, I never put it together with later health problems. Interesting, eh?

The hardest part of these illnesses is the fact that we do not ‘look sick’.
 
Didi said:
Tired of being a downer to everyone.

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

Tired of feeling completely useless.

Tired of looking at my messy, dirty house and not being able to do anything about it.
Click to expand...
I especially identify with these. The things in my day that are a triumph are difficult to report to friends. I am all thrilled, but if I say “I managed to weed a small portion of my garden”, it is the sort of thing that can be viewed as talking about illness, which most people don’t like, myself included at times.

I have become more accepting with time, though, so I don’t have a problem with canceling appointments. I just don’t make them in the first place. I carefully meter out my activities so that I’ll still be able to function enough to do the basics. And no, the basics do not include things regular people consider a basic. My list is exceedingly short. Eat food. Feed pets. Water pets. Watering of plants is optional. Wear some clothing of some sort. Greet husband when he comes home. Go to Sunday mass. Consume all my pills. I could do more than this if I did not also insist upon helping at my parish and doing a little work. If I dropped those, I could have a longer list of basics. But I only feel human by keeping a few commitments. I don’t know what I’d do without them.

I come to CAF because it requires no commitment and works well for someone in my situation. I can do it while lying nearly flat on my back. It is better than tv. I’m amazed at how many people like me there are. I think that is because the internet works well for people like me. I lose track of my threads, though, because I often can’t keep up with them, so I just stop replying even though I owe someone a response. That’s my trouble. I like talking on threads that make me think, but often I can’t think, so I can’t reply. Then I just lose the train of what was going on with that thread.
 
MaryD7 said:
I went to those websites and read the description of what fibromyalgia feels like. Yikes! I didn’t realize that it was shooting pains. I thought it was more of a dull constant ache … like you get when you have a virus or exercise a lot.

**That’s the joy of fibro and/or CFS…variety! I can have dull aches, shooting pains, pinches, burns, or a bruised feeling… most of the time it’s many of those all at once. Some people have pain in only one area that’s dull and constant. Others have migrating pain of varying intensity. Still others have constant razor like pain… it affects joints and muscles as well as soft tissue like skin and cartilage…
**
I have to admit that it sounds rather bizarre. I mean, why all of a sudden would a person’s body start reacting like this?

That is the million dollar question! If we could figure out the why then we might figure out the how to stop it or treat it.

It almost sounds as if there’s a breakdown of the body’s defense system and this disease takes hold.

One possibility for sure.

I’m going to see my SIL this weekend and I will show her this thread. I do now understand that she is doing things that will control the symptons so she can function.

I am sure she will appreciate that understanding. You are a great SIL for wanting to educate yourself instead of just turning a blind eye and figuring that since she most likely looks ok that things must be fine.

Sleep is very important to her. I’m not sure what she does for pain but I do know that she is going to a doctor and getting a vitamin cocktail shot that seems to be helping immensely.

Be prepared for ups and downs with treatment. Many sufferers I know are so happy to find something that helps with their symptoms only to have it suddenly stop working… she will need emotional support through this. It’s tough to feel as though your body is attacking itself and the outside world assumes you’re crazy.

I do have a couple of other questions:

Does this flare up all the time or is it like hanging around waiting to strike? Let’s take a period of a month: What percentage of time is spent in extreme pain? Does it depend on what is going on in your life (like stress, physical activity level) or does it just flare up out of no where?

Honestly there is no “formula”. Stress (physical and emotional) can definitely lead to a “fibro-flare” and most often does. But in any given time period things can be dramatically varied. A big problem for us is those “feel good” days. We end up doing way too much (for us, anyways) and that itself leads to a worsening of symptoms…it’s a big vicious cycle.
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Pug said:
I especially identify with these. The things in my day that are a triumph are difficult to report to friends. I am all thrilled, but if I say “I managed to weed a small portion of my garden”, it is the sort of thing that can be viewed as talking about illness, which most people don’t like, myself included at times.

I have become more accepting with time, though, so I don’t have a problem with canceling appointments. I just don’t make them in the first place. I carefully meter out my activities so that I’ll still be able to function enough to do the basics. And no, the basics do not include things regular people consider a basic. My list is exceedingly short. Eat food. Feed pets. Water pets. Watering of plants is optional. Wear some clothing of some sort. Greet husband when he comes home. Go to Sunday mass. Consume all my pills. I could do more than this if I did not also insist upon helping at my parish and doing a little work. If I dropped those, I could have a longer list of basics. But I only feel human by keeping a few commitments. I don’t know what I’d do without them.

I come to CAF because it requires no commitment and works well for someone in my situation. I can do it while lying nearly flat on my back. It is better than tv. I’m amazed at how many people like me there are. I think that is because the internet works well for people like me. I lose track of my threads, though, because I often can’t keep up with them, so I just stop replying even though I owe someone a response. That’s my trouble. I like talking on threads that make me think, but often I can’t think, so I can’t reply. Then I just lose the train of what was going on with that thread.
Click to expand...
**Your post really strikes a chord with me. I do hope you find your way back to this thread!

I feel so much of the same things that you do. Use this thread (or a PM) to celebrate your accomplishments. I managed to get out today to take my dress for my sister’s wedding to the seamstress. All in all it took maybe 30mins round trip. But it was a major deal!!! To someone else it would have been just another errand in a sea of many and it certainly wouldn’t have caused them physical pain or exhaustion…

Malia
**
 
**Fellow sufferers,

what is your WEIRDEST symptom? The one you never see listed on the websites or hear talked about…

Mine has got to be my ears. I know a fibroflare is coming on when they start to hurt/get sensitive. You would think I was talking about the inside, but I’m talking about the outside. My ears are exceptionally hard. When a flare is coming on I wake several times a night with excruciating pain in the ear I was sleeping on.

It’s like someone sawed it off then layed it flat on a table and hammered the heck out of it with a steel mallet then sewed it back on with a needle the diameter of a straw.

I have tried a variety of pillows to no avail. Nothing helps. When they get like this I can’t even talk on the phone because they hurt that bad.

Who’s next?;)**
 
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