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post #41 of 667
Quote:
Originally Posted by Blooming View Post
I have read, and of course do not have the source that people with Fibro have a 50% chance of passing it on to their children. I have also read that the chances may be higher in women, but I've read doctors are not sure if this because women are more apt to come forward with their symptoms or if more women just plain get it.
Which is why I'm so worried about my 11yo. The child who's so much like me. The child who's sensitive to chemicals, who has times when she has muscle pain for no apparent reason, gets "unnnaturally" tired at times, who gets easily overstimulated by too much noise or movement (yet at other times she's hyper and can't stop bouncing.)

One of the reasons she's being HSed is because there were times when a regular school schedaul simply exhausted her and then she was tired and overwhelmed and overstimulated and couldn't learn anything. Now, we schedual no more than 2 activities a week and have a lot of "down time" which both of us need.

I'm kind of scared for her future if she does have FMS. Even with SSI and child support, I will NEVER be able to move out of my parents' home. I don't have enough income to live independently in this area.

Quote:
Originally Posted by supakitty View Post
What other things specifically have people considered in their own differential diagnosis?
In my own, nothing. Although I did deal with depression for years and then, after my FMS diagnosis, I realized that I wasn't depressed anymore. I was no longer trying to do more than I was capable of and wondering what was wrong with me. I realized that most of my fatigue and brain fog was physical, not mental.

My doctors, however, did a full workup with lab tests and stuff to rule out Lyme's, Lupus, RA, etc. After about a year's worth of consistent results, the dr felt he could comfortably say I only have FMS.
post #42 of 667
Quote:
Originally Posted by Ruthla View Post
Which is why I'm so worried about my 11yo. The child who's so much like me. The child who's sensitive to chemicals, who has times when she has muscle pain for no apparent reason, gets "unnnaturally" tired at times, who gets easily overstimulated by too much noise or movement (yet at other times she's hyper and can't stop bouncing.)

One of the reasons she's being HSed is because there were times when a regular school schedaul simply exhausted her and then she was tired and overwhelmed and overstimulated and couldn't learn anything. Now, we schedual no more than 2 activities a week and have a lot of "down time" which both of us need.

I'm kind of scared for her future if she does have FMS. Even with SSI and child support, I will NEVER be able to move out of my parents' home. I don't have enough income to live independently in this area.

In my own, nothing. Although I did deal with depression for years and then, after my FMS diagnosis, I realized that I wasn't depressed anymore. I was no longer trying to do more than I was capable of and wondering what was wrong with me. I realized that most of my fatigue and brain fog was physical, not mental.

My doctors, however, did a full workup with lab tests and stuff to rule out Lyme's, Lupus, RA, etc. After about a year's worth of consistent results, the dr felt he could comfortably say I only have FMS.
Hugs to you Ruthla. I'm sorry your watching your daughter go through this. I hope that as she grows, more discoveries are made that will not only figure out the cause of the symptoms but also ways to prevent them.
She is lucky to have such an insightful, attentive mom.

My dr. still will do MRI's every 2 years as MS runs in my family and I have had symptoms that don't always fit the Fibro mold.
post #43 of 667

Hi joining! :


Quote:
chronic fatigue syndrome was my first thought

CFS and Fibro are basically the same illness, they have all the
same symptoms, only difference is in Fibro pain is the main
symptom and in CFS fatigue is the main symptom.

Btw I loved the Chronic Illness poem , I about cried!

I have only been ill with this "thing" for a few years. And yah,
it happened right after I gave birth. Course, now I have confirmed
that I am infected with Mycoplasma, which is interesting because
apparently most people with CFS and Fibro test positive for Mycoplasmas,
for yeast/candida, and scarily enough Lyme. I have tested positive
for Mycoplasmas and Candida, and I will be getting a Lyme test done soon.
Don't waste your time with the typical doctor's office version of the
western blot, its really inaccurate. I am probably going to order a kit
from Igenex. I was tested positive for Candida and Mycoplasma via
live blood microscopy. So it is reassuring to know its not just some
"mystery " illness with no cause.

The illness itself is almost always caused by an intruder which
becomes systemic throughout the body which either causes or
results from an underactive/overactive immune system.

Fibro and the muscle pain that accompanies it is extremely
suggestive of spirochetes or mycoplasmas, as they infect
the muscle tissue.

I am currently working on healing myself. I truly believe I also
have Lyme but wont know for a while. I am currently on
Mannatech supps, Salt C regimen and have just started
Raw foods. We are also saving up for rife equipment.
It is my belief that the body can be healed, it's just sometimes
harder than others. You get rid of the intruder, your body
is free.

The worst thing for me besides the tiredness is the hair loss!!
Omg i swear if i lose anymore hair i will be bald. In this case
it is vanity getting the best of me. Thinning hair is just so
gross looking.
post #44 of 667
Another question I have is how have people managed pregnancy with this diagnosis, was it worse, better, the same? I'm also having these feelings about not being able to care for a newborn when I am struggling so much right now.

-Laura
post #45 of 667
Thread Starter 
Mine started after pregnancy, so I couldn't tell you. It was very difficult, especially with a child who has always been as energetic as I used to be.
post #46 of 667
Quote:
Originally Posted by bigeyes View Post
Are there any of you out there?
How does it affect your parenting?

I feel like I have limited energy for my children and they are shortchanged in so many ways because I just can't do all the things other moms can.

Do you talk to your children about it, and do they have an understanding of just how your illness limits you? Do they understand the difference between not wanting to do things and being unable to do things?
I don't know. I haven't really discussed it with the kids. My oldest is 7 and could probably understand, but I don't think the younger ones could. I feel guilty that I can't run and play like other moms, or even babywear as much. I try to make up for it in other ways.


Quote:
Originally Posted by supakitty View Post
How many people here first thought (or still think) they have something like lupus, rheumatoid arthritis, polymyositis, multiple sclerosis, myasthenia gravis, etc...?

-Laura
I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then all of a sudden I start having this chronic pain and fatigue? I don't think so.

Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?
post #47 of 667
Re: Fatigue

It occurred to me recently that when I say I'm tired that I am so completely exhausted and fatigued that I could fall asleep while sitting in a chair listening to someone talk while the room spins, my head feels foggy and I can't focus my eyes in one place for very long.

That type of fatigue feeds my anxiety. It makes me feel "abnormal". The worst feeling I carry around is this feeling like it's a secret that I have to keep from others and try and pretend to be "normal". My worst days are the ones like that.

Most notably right now, I am having such an incredible bout of muscle fatigue and pain that I have been in bed for 7 days and I am off on medical leave from work.

-Laura
post #48 of 667
Thread Starter 
Quote:
Originally Posted by Brigianna View Post

I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then all of a sudden I start having this chronic pain and fatigue? I don't think so.
I believe it is caused and aggravated by chemicals, and the endocrine disruptors in our food, air, and water.
Quote:
Originally Posted by Brigianna View Post
Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?
I have been taking amitriptyline to help me sleep and prevent migraines. It makes me have cottonmouth and have to pee all the time. It also makes me tired as hell, which I don't need since I'm already tired as hell. I'm also taking topamax which makes me tired and stupid, symptoms I already had.

The things I take to help one thing end up making another worse. I hate it, but I can't function with the almost daily headaches, so I'll take more fatigue and brain fog over sheer agony, but it's a lousy choice. I keep hoping there will be a better choice someday. When I get a headache I take relpax which can make me sleepy or dizzy, but again, it's better than the alternative.
Quote:
Originally Posted by Brigianna View Post
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?
I am easily startled to the point where it's a PTSD sort of thing. I have adrenal fatigue which is related to fibro and hypothyroidism so it's hard to know where one condition starts and the other one ends.
Quote:
Originally Posted by Brigianna View Post
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?
Family members often assume i'm a malingerer. Dh gets annoyed at my chemical sensitivities sometimes but is otherwise usually supportive. Friends are all over the map, depending on their own health issues.
Quote:
Originally Posted by Brigianna View Post
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?
My health goes up and down all the time, I have not been able to figure out much of anything that causes the changes other than stress makes it worse.
post #49 of 667
Re: Friends.

That's an interesting thing. The ones who were there at first wonder why you haven't been able to shake it off and have grown bored with me not being able to do the things I used to do. The needy ones who take and don't give were the first to go (thank god!) and some who I wouldn't have expected have distanced themselves. I can't believe how judgmental some people have been "Oh THAT again" type of attitude, like my illness is a big inconvenience to them. Others however have emerged as people who are strong, loving and understanding and just want to be your friend because they like your company and enjoy the time you can spend.

Family is everywhere from overwhelmed with worry (my loving father) to passive denial and mild annoyance with the failure to find a diagnosis (mom) and everything in between.

I think people at work have been the worst and most judgemental, of course they are all in the medical system!

-Laura
post #50 of 667
Thread Starter 
Quote:
Originally Posted by supakitty View Post
Re: Friends.

That's an interesting thing. The ones who were there at first wonder why you haven't been able to shake it off and have grown bored with me not being able to do the things I used to do. The needy ones who take and don't give were the first to go (thank god!) and some who I wouldn't have expected have distanced themselves. I can't believe how judgmental some people have been "Oh THAT again" type of attitude, like my illness is a big inconvenience to them. Others however have emerged as people who are strong, loving and understanding and just want to be your friend because they like your company and enjoy the time you can spend.
God, how true is that? The users were definitely the first to go, because I just don't have the energy to deal with them any more. And isn't it interesting how the same people who lean on you the most are the ones who accuse you of being whiny and unable to snap out of it? Is it irony, or what exactly?

Quote:
Originally Posted by supakitty View Post
I think people at work have been the worst and most judgemental, of course they are all in the medical system!
Is there any way that I can offer my opinion of the medical community without violating the UA? Nope.

Suffice it to say that the more I learn about the FDA, pharmaceutical reps and drug companies, and the way medical schools and doctors get their funding, the more convinced I am the FDA is a bought and paid for whore, and the medical community is only interested in keeping us sick and taking our money. If it's at all possible, I want that statement on my tombstone, btw. The FDA is a bought and paid for whore. I'm sure it isn't grammatically correct, but it just doesn't have the same impact when you re-phrase it.

Yeesh. Is it any wonder I'm bitchy?
post #51 of 667
Quote:
Originally Posted by Brigianna View Post
I don't know. I haven't really discussed it with the kids. My oldest is 7 and could probably understand, but I don't think the younger ones could. I feel guilty that I can't run and play like other moms, or even babywear as much. I try to make up for it in other ways.



I believed, and still do, that I have something caused by chemical exposure. I can't prove it, and of course my former employer vehemently denies it, but I think it's too coincidental that I took this job and traveled around and got kidnapped and had all kinds of bad things happen to me and got exposed to all kinds of chemicals, and then all of a sudden I start having this chronic pain and fatigue? I don't think so.

Now my questions:
-What, if any, prescription drugs are y'all taking for FMS? Are they effective? What kind of side effects?
-Does anyone else have FMS in addition to something else that causes sensory issues (like autism, SPD, ADHD... not sure what else causes sensory issues...) and have trouble knowing whether certain sensory symptoms are FMS or your other thing?
-How has your spouse/partner reacted to your condition? What about extended family and inlaws? Friends?
-My fatigue has gotten progressively worse in recent months. My doctor says this is not typical. How many people here have this issue?
Hi Brigianna.
I take a number of perscription drugs, more then I ever thought I would. On a daily basis I take an anti-anxiety med, a muscle relaxer, and some type of over the counter pain med. On bad pain days I take a prescription extra strength anti-flammatory(sp?), or a pain med which is a narcotic (which I try my best to stay away from as the muscle relaxer is already a narcotic and I am not a fan).

I don't have any other diagnosed sensory issues, but since I was a small child have had issues that would now be diagnosed as something.

My dh has been great, life is hard that is for sure and he has picked up a lot of extra slack. But he is so loving and supportive. I am very lucky in this respect. My family as been very supportive in every way possible. My grandmother has MS and I think they are all just holding their breath praying it does not turn out to be MS too. (I have a very small family). My friends are also all over the map, I have not lost any friends but I have recently found that a couple of my friendships are not doing so well. I think they thought this was something that would go away and are a bit annoyed that it has not. I no longer have the energy to do some of the things we used to do together such as go on long hikes. I had one friend who is normally not all that strong but has turned out to quite literally be my pillar of strength, she is the one I call crying, and she is the one who supports me with all her heart.

I have ups and downs with my fibro I had a time when it was so bad I was exhausted more and more everyday until I could not walk. My legs started giving out on me. They have not stopped that little number since. My doctor is very layed back about the whole thing, sometimes to my annoyance. My next stop is to see a neurologist and take pain management classes.
I am not looking forward to that doctor appointment.
post #52 of 667
Quote:
Originally Posted by supakitty View Post
Another question I have is how have people managed pregnancy with this diagnosis, was it worse, better, the same? I'm also having these feelings about not being able to care for a newborn when I am struggling so much right now.

-Laura

Another one for not being diagnosed until after I gave birth to both my sons.
post #53 of 667
Quote:
Originally Posted by Jeanne D'Arc View Post

Hi joining! :




CFS and Fibro are basically the same illness, they have all the
same symptoms, only difference is in Fibro pain is the main
symptom and in CFS fatigue is the main symptom.

Btw I loved the Chronic Illness poem , I about cried!

I have only been ill with this "thing" for a few years. And yah,
it happened right after I gave birth. Course, now I have confirmed
that I am infected with Mycoplasma, which is interesting because
apparently most people with CFS and Fibro test positive for Mycoplasmas,
for yeast/candida, and scarily enough Lyme. I have tested positive
for Mycoplasmas and Candida, and I will be getting a Lyme test done soon.
Don't waste your time with the typical doctor's office version of the
western blot, its really inaccurate. I am probably going to order a kit
from Igenex. I was tested positive for Candida and Mycoplasma via
live blood microscopy. So it is reassuring to know its not just some
"mystery " illness with no cause.

The illness itself is almost always caused by an intruder which
becomes systemic throughout the body which either causes or
results from an underactive/overactive immune system.

Fibro and the muscle pain that accompanies it is extremely
suggestive of spirochetes or mycoplasmas, as they infect
the muscle tissue.

I am currently working on healing myself. I truly believe I also
have Lyme but wont know for a while. I am currently on
Mannatech supps, Salt C regimen and have just started
Raw foods. We are also saving up for rife equipment.
It is my belief that the body can be healed, it's just sometimes
harder than others. You get rid of the intruder, your body
is free.

The worst thing for me besides the tiredness is the hair loss!!
Omg i swear if i lose anymore hair i will be bald. In this case
it is vanity getting the best of me. Thinning hair is just so
gross looking.
Thanks for this I have to look into it.
post #54 of 667
Quote:
Originally Posted by Blooming View Post
Another one for not being diagnosed until after I gave birth to both my sons.


I wasn't diagnosed until after my three girls were born.
post #55 of 667
Quote:
Originally Posted by bigeyes View Post
I'm pretty sure I had it for a long time before being diagnosed too. I fought it for a long time with caffeine and cigarettes, then when I quit smoking I crashed so hard it wasn't funny. I thought everybody had to do something to keep going.
OMG! That sounds so much like me!

I never put that together before, that I was actually self-medicating. It was a vicious cycle though; I was wound up so tight that I couldn't sleep, then needed more stuff later on to keep me awake so I could work and do at least a portion of what I needed to do, etc.

My sleeping issues go WAAAAAAAY back. I still have tons of trouble sleeping, even though I no longer smoke and cut back on caffeine. A light on in the hallway, light reflecting from a cellphone, light from the streetlamp outside -- all of these will keep me awake. Even a small amount of noise will keep me up too (forget about trying to sleep on a plane).

I've noticed that my daughter has the same insomnia issues that I had when I was her age (my parents didn't take them seriously). She's still somewhat afraid of the dark so she wants to have a nightlight on, yet it keeps her up for hours. I'm not sure what to do for her.
post #56 of 667
Thread Starter 
I just read in my adrenal fatigue group that cigarettes increase your cortisol production, and one of the things we do to fight adrenal fatigue is take cortisol or cortisonem because it helps our thyroid meds work better. So apparently it's 'normal' for us to crash when we quit smoking.

No wonder I always felt better as a smoker, despite all the you'd feel so much better if you'd just quit comments. : I always thought that was strange.
post #57 of 667
Quote:
Originally Posted by bigeyes View Post
I just read in my adrenal fatigue group that cigarettes increase your cortisol production, and one of the things we do to fight adrenal fatigue is take cortisol or cortisonem because it helps our thyroid meds work better. So apparently it's 'normal' for us to crash when we quit smoking.

No wonder I always felt better as a smoker, despite all the you'd feel so much better if you'd just quit comments. : I always thought that was strange.
Are you suggesting that cigarettes do have a medicinal value for fibro patients? I'm not suggesting we all take up smoking, or that the risks outweigh the benefits, but this is the first I've ever heard of tobacco actually (potentially) having benefits.

Spiderdust- melatonin production is hampered by light. If you and/or your DD have trouble making enough melatonin, then a melatonin supplement may solve the problem. You may want to try something like 5-htp first as it's a precursur to making seratonin, and seratonin gets broken down into melatonin. By increasing the seratonin, you're giving your body a chance to make what it needs, when it needs it, instead of JUST replacing the melatonin that isnt' being made naturally.
post #58 of 667
I was diagnosed after the birth of my first daughter. She was about 1 year old when I was dx
post #59 of 667
Thread Starter 
Quote:
Originally Posted by Ruthla View Post
Are you suggesting that cigarettes do have a medicinal value for fibro patients? I'm not suggesting we all take up smoking, or that the risks outweigh the benefits, but this is the first I've ever heard of tobacco actually (potentially) having benefits.
Sort of, but yeah, I'm not about to start again. It really explains to me the difference in the way I felt when I smoked. It's so annoying the way every single thing that helps one problem causes others.
post #60 of 667
I'm seeing my rheumatologist today after being on medical leave for a week and stuck in bed with pain and weakness. I hope he comes up with something. I still don't actually have any type of diagnosis. My biggest fear right now is myasthenia gravis. I hate how these symptoms seen to fit all the big, bad, scary diseases.

-Laura
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