Fibromyalgia/CFS

[Feanaro_s_Wife]

I assume this was directed to me since it was right after my post

I wasn’t trying to give medical advice, I was just trying to share some hope and share my own experiences just like everyone else – and that’s why I suggested anyone who wanted to could private message me. Please don’t shut down the thread.

**
Don’t worry about it. Your suggestion was borderline so that’s why the mod let you know. IF it was actual medical advice this thread would have been shut down immediately. So thanks again for mentioning it but, like I said before, we have to be careful how we word things so that no one replaces our advice for that of their doc…

Malia**

 

[Pug]

(And yet, if you don’t dash right out and try everyone’s suggestions right-this-second, then they assume that you don’t *want *to get better.)

Oh, man! So true! I’ve been given all sorts of crazy self-help books, books requiring odd diets, people wanting me to eat preserved foods (with good bacteria or something), only exercise by swimming, exercise more, stop taking naps, you name it. It is like they think my doctors are clueless. Uh, well, I do think my doctors are clueless, but it is okay for *me *to think that.

 

[Sailor_Kenshin]

Do y’all’s find your symptoms get worse when you’re sick?

I can’t tell whether I have a cold or bronchitis of flu or whatever, but MAAAN, everything hurts.

 

[TraderTif]

Do y’all’s find your symptoms get worse when you’re sick?

Well…I often have a hard time figuring out when I’m sick, lol. The CFS symptoms often feel identical to many common cold/flu type symptoms.

But if other people in my family catch it, then I assume it’s not CFS.

I don’t always notice a worsening of CFS symptoms when I get sick, but I do often find that a 24-hour bug…can last for several weeks. And I’m not always convinced that it’s actually the bug. It seems more like I get over the bug, but I have residual symptoms or something. Very frustrating.

And I seem to catch everything! I’m always very cautious about going out in crowds. And yet, even though I catch minor bugs very easily, they generally never go into pneumonia or anything secondary. I know that CFS can wreak havoc with your immune system (that’s why it’s also known as CFIDS, or Chronic Fatigue Immune Dysfunction Syndrome), but this is just silly!!

 

[NoxSineStellae]

(And yet, if you don’t dash right out and try everyone’s suggestions right-this-second, then they assume that you don’t *want *to get better.)

I’ve been sick for nearing on 13 years. Diagnosed first with depression, then Fibro/CFS, then, when partial paralysis set in and lesions showed up on my brain, a MS/Lupus “spectrum” combo. Most recently, my GP and neurologists are thinking it’s Lyme that was missed by the “you’re depressed and don’t want to go to school” jackass and became chronic. By this point, there is no evidence of it in my blood, but I have every single symptom of Lyme, including the bullseye rash at the beginning of the illness.

So my sister, bless her heart, does all this Lyme reseach earlier this year, and suggests approximately 25 treatments, all of which I’ve tried. The e-mail was concluded with “Now it’s time to get you better!”

I know she means well, but it really hurt What exactly does she think I’ve (and our mother, who has worked tirelessly to help me - my father thought I was faking/crazy until 10 years in, when the neurology department of a major teaching hospital told him I wasn’t…never could believe his own daughter, even though I’d been a model child) been doing for the last dozen years?!

I’ve tried every conventional and unconventional remedy I can afford that I’ve read about/had suggested to me. After all this time though, and so many not doing anything at all, I do like to take a breath a weigh things before setting myself up for another disappointment. That doesn’t mean I want to stay sick

The only supplement that has made a difference in my energy levels is Rhodiola Rosea. It gives me the same boost that the Amantadine did for the MS symptoms, but without the buildup of side effects. It also eases some anxiety.

 

[LittleDeb]

I know she means well, but it really hurt What exactly does she think I’ve (and our mother, who has worked tirelessly to help me - my father thought I was faking/crazy until 10 years in, when the neurology department of a major teaching hospital told him I wasn’t…never could believe his own daughter, even though I’d been a model child) been doing for the last dozen years?!

Sometimes I am the most bitter about this part in my own life. The years of missed school and having my own family not believe me. Even now, as an adult, I have times when I don’t want to tell people I’m in a flare because of the many ways they might try to “help” me. We all know the phrase, “Well so and so went on this miracle herb and is totally cured.” I am now very suspicious of anything with the word “cure” in it no matter what the topic.

 

[Didi]

“Well so and so went on this miracle herb and is totally cured.” I am now very suspicious of anything with the word “cure” in it no matter what the topic.

I’ve had this happen so many times, too! What I’ve come to realize is that most people just really want to help. Now I usuallly say something like “My immune system and nervous system don’t react normally, so what may have helped someone else might not help me, but thanks for the suggestion.”

I, too, am very leary of anything that promises “cure” or says it well help anything from the common cold to cancer.

Every person is different and reacts differently depending on what’s happening in their body.

People who haven’t dealt with chronic illness really don’t understand the longevity; they just want some miracle cure so you’ll feel better, which is what modern medicine leads most people to believe – just pop a pill or have a surgery and you’ll be fine!

 

[Feanaro_s_Wife]

I’ve had this happen so many times, too! What I’ve come to realize is that most people just really want to help.
**
I think it’s happened to all of us. If we have people who care about us they will inevitably try to “help”. For me it’s my grandma. So well meaning but it gets so annoying after awhile. But I keep that on the inside, lol.**

People who haven’t dealt with chronic illness really don’t understand the longevity; they just want some miracle cure so you’ll feel better, which is what modern medicine leads most people to believe – just pop a pill or have a surgery and you’ll be fine!

**Even people who deal with other chronic illnesses can have a hard time with this. Lots of them have a choice of meds/treatments and the general acceptance of society in general. It’s tougher for us sometimes because there is no set of effective meds or treatments and our symptoms are often invisible…

malia
**

 

[Didi]

As we quickly approach the celebration of Our Lord’s birth, I just want to wish you all a very Merry Christmas!

I know this time can be hard, because we can’t always go and do all the things we wish we could.

Yet, for me, my illness has allowed me to really reflect much more on the Advent and the Christmas seasons, and makes me choose only those activities that are most important to me. It is much less rushed and hectic than in the past.

I pray you are surrounded by family and friends and that you truly feel the presence of Jesus this Christmas!

 

[Feanaro_s_Wife]

As we quickly approach the celebration of Our Lord’s birth, I just want to wish you all a very Merry Christmas!

!

**
Merry Christmas to you and yours as well Didi! And to everyone else too

malia**

 

[TraderTif]

I was just remembering this thread today, and I figured it would be a perfect place to ask a question.

How has having CFS (or fibro) affected your parenting?

See, I’m single, but it’s something I’ve always thought about. I mean, sometimes I feel like I don’t have enough energy for myself, never mind taking care of children!! And yet I know that people with CFS do have children, so it can be done.

So what are your thoughts? Is it harder to raise children when you have CFS? (I know it’s sure hard to meet potential spouses when you have CFS…so I’m not sure how soon I would have to be really considering this… )

 

[Feanaro_s_Wife]

So what are your thoughts? Is it harder to raise children when you have CFS? (I know it’s sure hard to meet potential spouses when you have CFS…so I’m not sure how soon I would have to be really considering this… )

**Is it harder? For me, a big fat YES. Before hubby and I even considered starting a family I asked around on some of my support groups to find other women who had children with CFS and/or Fibro. I couldn’t find anyone that had the disease(s) PRIOR to having children. Most developed it when their children were much older…

so I went into it blind. It has been the most difficult (although most rewarding) thing I have done in my life. I know one other woman around my age who has CFS too who had a baby 3 months after me. She is having a really tough time too.

I have to go… I want to say so much more, but I’ll leave it with

*anything is possible

• plan plan plan

get LOTS of help (and hopefully you won’t need it)*

 

[LittleDeb]

I had fibro before becoming a parent. Malia’s got it right. Plan, get help, let God. Some days it is just basic meals and diaper changes on my bed. My infants were easier for me. They held still. With my toddler I have to drag myself to the couch to watch him when he is being unruly. Makes recovery longer.

My second pregnancy was one long fibro flare. I was bedridden. I had to get help when I could. Flare up went away with her birth. Now my toddler is helpful on some days. He will run get a diaper from her room if I run out in my bedroom. He puts the dirty diapers in the pail too. That used to be tough to get up to do.

Basically, you make it work. All I ever wanted to be was a mom so here I am. It is by far the most valuable thing I have ever done. I thank my fibro sometimes for my motherhood. Without having it to keep me focused I might have gone down a completely different path, just because I “could.” But I didn’t because I couldn’t. The Lord works in mysterious ways.

Merry Christmas to all!

 

[Didi]

How has having CFS (or fibro) affected your parenting?

I didn’t get sick until after we had two children; they were 6 and 10 when I became bedridden several years ago.

Even though I often wish I could do more active things with my kids (bike riding, hiking, etc.), in many ways I think I’m a better parent than I was before I got sick. Sounds kinda crazy, I know.

My faith is stronger, and my kids see my dependance upon prayer and upon God. They see us asking others for prayers when we need it, and they see and feel the fruit of those prayers through God’s graces.

I’m much less uptight about certain things than I used to be (housecleaning, making sure things are “perfect” before we have company, etc.). Especially in the case of my teenage daughter, I think I have been more accepting of her growing up and less interfering with the details of her schoolwork than I would have been before. We would have really butt heads a lot more if I hadn’t had this illness.

My children are very compassionate, especially with other adults they know who have health issues. They are more “tuned in” to when others aren’t doing well, and will go ask them how they’re doing after Church and give them a hug. We’ve had many people marvel at how compassionate our teenagers are!

There are so many days when my children keep me going. Especially in the early days when I was bedridden, it would have been so easy to just stay there and give up. Because of them, I fought, I sought out doctors who understood, and I still drag myself out of bed when I don’t feel like it, for them.

I’m sure there’s more, but you get the idea. Out of every cross, there is also a blessing!

 

[nana3]

How has having CFS (or fibro) affected your parenting?

See, I’m single, but it’s something I’ve always thought about. I mean, sometimes I feel like I don’t have enough energy for myself, never mind taking care of children!! And yet I know that people with CFS do have children, so it can be done.

So what are your thoughts? Is it harder to raise children when you have CFS? (I know it’s sure hard to meet potential spouses when you have CFS…so I’m not sure how soon I would have to be really considering this… )

I will say that it is harder to parent. I have had fibromyalgia before my dd’s birth. I could not have any more children due to the chronic pain and feeling tired all the time. This month has been a bad month for me and I am having a flare up as I write this. My dd is supportive or tries, she is 8, but prays so hard for the Lord to cure me. She not only has one parent who is disabled, me, but two for my dh also is disabled. We are not an active family and it gets to her. She wants to run with her parents and ride bike as a family. When it gets to her she would say,“Your stupid back prevents everything fun!” My back hurts the most, but I ache everywhere. I think it is natural for her to be selfish, but she is not like this always. She helps around the house and is a good student when I homeschool her. She is grateful for all I do for her even in pain. She will thank me often and give me thank you cards. Just now, as I sit here writing this to you, she gave me a card she made for no reason and the title of it is “I love you.” She is a great daughter and has given up a lot due to our pain, but the Lord has blessed us with a great compassionate daughter. She still prays that I will be cured and daddy also and that she will get a brother and sister. I tell her not ever to give up on her prayers to God.

Yes, it can be hard to parent, but don’t let that stop you, it is all worth it.

 

[Sailor_Kenshin]

One of the toughest things about this is you LOOK fine, so no one believes you feel like weasel poo.

 

[LittleDeb]

One of the toughest things about this is you LOOK fine, so no one believes you feel like weasel poo.

“weasel poo.” I will try to remember that one!

Yeah I’m feeling sad today because I had to skip the pro-life march so that I have enough energy for something else that I absolutely need to do. I hate having to choose between important events. I don’t “look sick” yet I have to plan my life because I am. :crying:

 

[Sailor_Kenshin]

“weasel poo.” I will try to remember that one!

Yeah I’m feeling sad today because I had to skip the pro-life march so that I have enough energy for something else that I absolutely need to do. I hate having to choose between important events. I don’t “look sick” yet I have to plan my life because I am. :crying:

I couldn’t even consider that march, though I have friends who go every year.

And I have to bail on a long-awaited family function tomorrow.

 

[TraderTif]

Yeah I’m feeling sad today because I had to skip the pro-life march so that I have enough energy for something else that I absolutely need to do. I hate having to choose between important events. I don’t “look sick” yet I have to plan my life because I am. :crying:

Hey! And I thought I was the only one!! I couldn’t make it to our local pro-life march today because I felt especially lousy. (And the march was at the state capital, 2-hours north, through the mountains…and did I mention that I get carsick??)

 

[Feanaro_s_Wife]

**I’m glad you guys started posting about missing important events and/or activities. I wish I could help my hubby truly understand this aspect of the illness. Most of the time he is pretty good, but once in awhile I will get the “if you loved me you would make some sacrifices when it’s important to me” speech/guilt trip. Every day involves sacrifice. Maybe not on a grand scale in healthy people’s eyes, but huge to us who suffer.

For those of you with spouses, how do you help them understand?

Malia**