Fibromyalgia/CFS

[Didi]

To DiDi,
Could I insert a possible explanation for an out of the blue MS diagnosis? My husbands boss at work was mistakenly diagnosed with MS, when he really had aspartame poisoning (nutrasweet)

Thanks. I gave up all artificial sweeteners several years ago. They certainly may have contributed to my problems, but aren’t an ongoing issue for me.

BTW I wasn’t ignoring this thread; just had a couple of “those days” and wasn’t on the computer much!

 

[Didi]

Here is something I wrote when going through three years of torture when applying for disability benefits.
Malia

Very nice analogy! I’ll have to remember that one.

It has also helped me to recognize that there are different factors that affect your energy when you deal with fatigue on a daily basis. “Normal” people don’t think much about social energy, but sometimes talking on the phone can wear you out. It’s especially difficult for me in large groups where you have to put forth that social energy in meeting new people or just mingling with several people that you know.

Knowing that there’s physical, social, mental, emotional and spiritual factors in how much of your energy is depleted has helped me when weighing whether I’m able to do an activity or not.

This is one area that people who haven’t experienced true fatigue just don’t understand.

There have been times of crisis (my Dad’s open heart surgery) where I’m able to “rally” and get through several days activities, only to completely crash and burn for 2-3 weeks later. But sometimes all other people see is “well, she was able to be at the hospital all week…”

I just often think of Jesus on His cross and all the people telling Him to “Come down if you are the Son of God. Save Yourself!” They just didn’t understand that He couldn’t come down exactly because He was the Son of God and had His mission to accomplish.

Jesus knows what it’s like to be misunderstood. That helps me through.

 

[Feanaro_s_Wife]

Knowing that there’s physical, social, mental, emotional and spiritual factors in how much of your energy is depleted has helped me when weighing whether I’m able to do an activity or not.

So many people just never think of this aspect, just because they’ve never had to. In my daily life things that are “leisure” for the rest of the world can be exhausting for me. “go take a bubble bath and relax” is a common one…hmmmmm…run the tub, get undressed, get in the tub, sit on the hard surface for x-number of minutes, haul self out of tub, dry off, get dressed again…yikes, lol. There is more energy expended for us in one bubble bath than for someone training for a marathon

This is one area that people who haven’t experienced true fatigue just don’t understand.
**
Hopefully we can help. There are people who truly wish to understand and through threads like this maybe we can make a small difference.**

There have been times of crisis (my Dad’s open heart surgery) where I’m able to “rally” and get through several days activities, only to completely crash and burn for 2-3 weeks later. But sometimes all other people see is “well, she was able to be at the hospital all week…”

**Most of the time that’s all people see. Or the little things too. “Well, you did “x” yesterday, why can’t you do it today?” Or “you did “y” with so and so, why won’t you do it with me?” It all eventually becomes personal and many friends get lost. At least that’s been my experience. It takes a special person to understand that we really want to do things but just can’t. We aren’t making excuses or being lazy or avoiding things…

malia
**

 

[Pug]

It has also helped me to recognize that there are different factors that affect your energy when you deal with fatigue on a daily basis. “Normal” people don’t think much about social energy, but sometimes talking on the phone can wear you out.

Just like going to a friend’s house for dinner. This is a big chore, even though it might not seem like it. At my home, I can just go lie on the couch intermittently during the evening. At a friend’s house, I can’t really do that. I’m just not comfortable disengaging socially while at someone’s house. Being social takes energy, and not just because you have to sit up and look attentive. You have to concentrate, which is tiring. You have to “be” something (other than plain tired).

 

[Didi]

Just like going to a friend’s house for dinner. This is a big chore, even though it might not seem like it.

I know, this is hard for me, too. What’s hard is that I long for social contact, but it wears me out so quickly. That’s why I like the forums and e-mail. I can do it when I feel up to it, in the quiet of my own home, and quit when I get tired.

Thank God for the Catholic Forums and other great places to visit on the internet!

 

[Pug]

Thank God for the Catholic Forums and other great places to visit on the internet!

CAF Rocks!

Okay, my small burst of energy is gone.

 

[Didi]

Okay, my small burst of energy is gone.

Whew, you wore me out, too!

 

[TexCatholic4JMJ]

I will pray for all of you that have CFS and/or FM or MS or
Lupus or RA. My daughter has been diagnosed with the latter
two and then told that no she doesn’t have them. Some things
that appear to help her during the flareups of whatever are some
organic supplements of various kinds as well as rest and trying
to “destress” her life. The latter is a super hard for her to do be-
cause she is always helping others even though she may be
feeling lousy. One of her doctors wanted her to do pain manage-
ment workshop for others because she couldn’t believe that she
could be so productive when it was obvious that she was in such
severe pain. Looking back, there are several incidents that I be-
lieve might have contributed to her problems. She lived in a highly
polluted area when she went to college and drank very polluted
water (she was so broke she had no tv, no radio, and no news-
cpaper and later found out that they had asked people not to drink
the water because of chemical spills, etc. We sent her a water
filter when we found out and once installed provided for the whole
apartment complex she lived in.) She did not have enough to eat
but did not want to worry us so she wouldn’t tell anyone. Her
boyfriend came to surprise her once and discovered she had no
food in the house and only the filtered water in the fridge. He
was so upset with her she promised never to do that again. He
was a lifesaver and she never did it again. She would let us know
when she was low on money because they cut the hours at work
or because she had exams and more school hours. She would
get sick but not take herself to the doctor. Sometime after this
she got so sick that she did go to the doctor and he told her
she was allergic to practically everything. Plastics, preservatives,
dairy products, wheat, chocolate, etc, etc. How she came out of
that, I don’t remember because it was one of those times when we
found out much later.
I began to read a lot of medical articles as well as naturpathic
articles. Interestingly, the approach or thinking of the two is
something like this. Allopathic medicine treats autoimmune
diseases’ symptoms; naturpathic medicine tries to “remove”
the barriers that are not letting your immune system be healthy
and allow it to repair itself. With auto immune diseases, (all the
above as well as diabetes and others) the naturpaths believe the
body was overwhelmed with infections or viruses and left un-
treated. Later the weakest part of the body quits working, or
perhaps several. As an example, streph throat left untreated
(easy to do since sometimes one can have mild or no symptoms)
can leave kidneys, livers, heart and/or pancreas scarred or
diseased and unable to do their functions. Here’s where I think
the two diciplines should get together. For example, (some
of this is occurring now) say someone with cancer is going to
require chemo. Now some of the side effects can be almost
as bad as the cancer, but if the patient is built up to have less
side effects by working with the naturpaths, it can be a win/win
situation for the patient. As I said, some of this is occurring
now but for the most part, the two diciplines do not cooperate.
For my daughter, I pray, pray, pray because she can’t even
get an accurate diagnosis. One of her doctors is going a bit
more to the “natural” with meds, but there does not seem to
be any consistency to it. I have seen my daughter go through
so much, it’s not impossible to have empathy for those of you
who are going through similar and even worse experiences.
I will up my prayers for all of you.

 

[Sailor_Kenshin]

Same here—I was tested for Lyme, Lupus, RA, etc, told I didn’t have them, then got a call a month later from the doctor: “Oops, yes you do!” And then still later: “No, you don’t!”

Finally I went to a REAL doctor. I don’t have any of that. So my prayers are with you.

 

[Didi]

My experience has been similar as well. The MDs would probably diagnose Chronic Fatigue and maybe Fibro; some say I do have MS; others that I don’t. I had one MD say to me “Well, you probably have CFS, but there’s nothing we can do to help you, so don’t come back.” Almost every MD I went to asked me to take a depression screening, which always came back negative. It was extremely frustrating.

Finally through a neighbor, a family member, and a friend who is a nurse, we put together symptoms after doing research on the internet and found that I likely had an overexposure to a pesticide which built up in my system and that, combined with having mono, triggered all my problems.

I went to a naturopathic clinic who agreed, but didn’t really have any diagnostic way to confirm this. Years later and two other naturopathic clinics later, I do have this as a confirmed diagnosis, but again, the traditional medicine MDs do not accept this even with the diagnostic test results. They look at my like I’m crazy.

It is so true that MDs and NDs (naturopathic physicians) need to learn to work together. So many of the drugs MDs prescribe end up doing more harm than good, and many more people are having adverse reactions, or like me, can’t even take any prescription without some type of severe reaction.

And, yes, many of the immune diseases like CFS, fibromyalgia, lupus, MS, etc. are related to triggers (often a virus) and a sort of toxic build-up in our systems.

God bless your daughter, TexCatholic4JMJ. If she ever wants to e-mail with someone who has something very similar, private message me.

 

[Didi]

After receiving a PM from another sufferer, she reminded me of something I sometimes think about myself. The thought about what I would be like now if I became suddenly healed. While chronic illness is difficult, and I wouldn’t wish it on anybody, it has taught me a lot and in many ways, more than just physical, it makes us different people.

I’m very different in that I’m much less controlling and obsessive (I used to be super organized and had to have my towels match in the bathrooms!) That’s all gone! I used to go-go-go until I dropped. Now I really have to weigh the importance of what I do and prioritize and simplify.

I used to be pretty sure of myself (with the short-term memory loss and inability to come up with the “right word” that’s gone!). In fact, I’m much better at poking fun of myself than I used to be.

But, most importantly, I’ve learned to really trust in God every day. On the hard days even more so. And I’m learning to offer my sufferings. I pray a lot more. I sympathize easier with others going through trials.

As hard as it has been, I wouldn’t want to give up any of the things I’ve learned and I have wondered if I’d return to my old ways and old self if I suddenly was completely healed. I’ve even prayed and asked the Lord that if I need this cross to stay close to Him, I’d rather have it than be well and move away from Him again (thus my signature line).

What are some of the positives for the rest of you? How has God used your illness to make you a better person?

 

[robnx]

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.

 

[Didi]

Hi Robnx –

Noticed you are new; welcome! I don’t know if you meant to write something with your post above or if you just related to it. Hope to see you back here!

I’m off for now, because, of course, I’m tired!:yawn:

 

[TraderTif]

What are some of the positives for the rest of you? How has God used your illness to make you a better person?

Well, I’ve had CFS since the age of 8 (if not earlier), so it’s hard for me to imagine *not *having it. But…it has certainly taught me many things!!

-After struggling with the anxiety symptoms of CFS, I now TOTALLY appreciate being able to go to mass.

-I have more empathy for other people who are struggling with illness. I also have more empathy for people who are not taken seriously by those around them. (Just as my doctors didn’t take my illness seriously.)

-I’ve learned that, quite often, things are NOT going to go the way I want them to go. Just because I want to do something…does not mean that I can (or should).

-I’ve learned that I can’t compare myself to anyone else; that “things”, “accomplishments”, and “recognition” should not be the focus of my life.

That’s all I can think of at the moment…but I’m sure there’s more, lol.

Tif

 

[Didi]

-I’ve learned that I can’t compare myself to anyone else; that “things”, “accomplishments”, and “recognition” should not be the focus of my life. Tif

This was so hard for me when I first became sick. It seemed like everything I did (work, volunteering, etc.) was slowly taken from me and I just felt like a useless shell.

But it was only then that I found my true worth in Jesus Christ and as a child of God. We are nothing without Him!

Another positive for me has been with my children. While it’s hard because I can’t always go and do with them, I’ve had many people comment on how compassionate my children are with others. I know this stems from their concern and care for me. God is molding them into the people He wants them to be, partly in spite of and partly because of my illness.

 

[Didi]

I just returned from a wonderful retreat weekend.

One thing I learned was that I have viewed my body, because of all my health problems, as the “enemy.” I often feel like my body lets me down or works against me or betrays me.

After talking with the priest, I learned that I really need to learn to forgive my body, because it is a wonderful and marvelous work of God. I need to focus on the blessings I have received because of this illness, and recognize my body as the beautiful and wondrous creation of God, which has sustained me through all these trials.

I thought many of you might be able to relate to the feeling of betrayal and may benefit from these insights as well.

I am very thankful that I was able to make it through the weekend physically (my first full retreat since before I became so ill!). I realize that while I do have daily challenges, I have made progress both physically and spiritually, and that I need to focus on the positive and thank God for all the good!

God bless you all!

Didi

 

[Pug]

Didi,

I’m so glad you got to go on a full retreat and that it went well!

 

[Feanaro_s_Wife]

**Thanks for posting that Didi!

Malia**

 

[Sailor_Kenshin]

:clapping:

Yay!

 

[pagapp]

I just came across this thread. I had a chemical exposure at about age 20 (early 1980’s), then had problems with printed paper at my job in about 1999. Then I started having trouble with all kinds of perfumes, cleaners, rubberized items etc. I also had some fibromyalgia symptoms but not severe like some of you have mentioned. chronic fatigue was significant. Most difficult is that most people don’t understand. Church and school activities were very hard since I frequently exposed to perfume etc. I also had a brain scan done in 2000 and the findings were that I had possible toxic encephalopathy. I was having significant brain fog.

The good news is that I am much much better. I started putting organic lemon juice in my water all the time. Also taking vitamins and especially magnesium. Very gradually I got better. I started exercising regularly at Curves 4 years ago. There was a time when I couldn’t be on my feet for even an hour. Now I can be on my feet all day long .