Chronic Fatigue, Fibro, Auto Immune....

Updated on August 09, 2010
L.R. asks from Apache Junction, AZ
8 answers

Moms with Chronic fatigue, Fibro, etc.....
How do you deal with you day, with no disability? I have fibromyalgia~ I have good days with energy, and bad days with Low
energy where I can barely pick my head up. We can barely survive on one income!
I also sing prof. and it attacks my vocal chords~
We have been stuck on the outskirts for 5 years (can't sell our home, rent it, etc..i had another post in regards to this) however,
it is just so difficult to worry about finances with an illness that leaves you completely drained.

How are you dealing with this? How do you take care of your health, when there is so much else on the plate...when it comes to
finances. I feel like I am slowly hitting the wall, because I cannot take care of my health properly :(

We have one son 8 years old and God has given me enough energy so far, however there are days when trying to worry
about finances and health can mow me over.

How are you doing it?

What can I do next?

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So What Happened?

Hi all, thank you for your precious answers!
I have had this my entire life, however I think I have just hit the wall trying to juggle health and finances :(
Your responses all game me a boost, knowing I am not alone.
Thanks again, God bless!

More Answers

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D.G.

answers from Houston on

I'm so sorry you are dealing with this. Have you ever had your thyroid checked (not just TSH but thyroid hormones themselves, T4/T3)? There is increasing evidence that a "normal" TSH is between 0.4-2.5 mIU/L.

I was achey and fatigued- just couldn't get off couch after work- when I was hypothyroid. I know that there is a lot of overlap between hypothyroid and fibromyalgia and CFS symptoms. And hypothyroidism can also affect voice/vocal cords. I even know one lady whose "CFS" was cured by switching doctors- to one who treated thyroid issues more agressively and started her on thyroid meds.

Anyways, when I was in the trenches, hypothyroid and exhausted and not knowing why, it helped me to eliminate refined carbs and caffeine from my diet. I would crater earlier if I ate anything that "spikes" your blood sugar. I also tried to focus on the most important things (ie job/family) and let everything else slide.

There is also a website for those dealing with chronic illness that you might find useful/supportive: http://www.butyoudontlooksick.com/

Good luck, I hope you have more good days soon.

2 moms found this helpful

S.M.

answers from Kansas City on

I just DO it. I hate the way I look when I am hobbling around. But for the most part I don't let my illness stop me. It's PAIN. We will be in pain no matter what. The fatigue can be crushing I know. But I drink energy drinks. It gets me through the day. Sometimes just putting one foot in front of the other gets me through the day.

I made a decision a long time ago to stick to advil or alieve. I don't go to the doctor and I don't see any other pills or potions unless it's vitams and herbs. I eat as well as I can and I read, listen to relaxation music when possible, and watch movies. Laughing is good medicine.

If you aren't working it's because you are choosing not to. I know you are thinking I must not be in as much pain as you or as tired. You have no idea. For years I couldn't read at all because I'd fall asleep. My feet are in constant and horrible pain. I stay on them all the time because slowing down is not an option. I have two speeds, on and off. As soon as I stop letting momentum push me forward, I'm out. When I sit to watch tv, it better be very good because the chance of me staying awake long enough to finish anything is pretty minimal.

I do run an in-home daycare. It does let me adjust my days accordingly. I put the kids first and I MAKE SURE that they get what they need. But some days I need to get what I need and then that means they watch a video while I rest for a bit. It also allows me to adjust the way I do things. If I'm in a lot of pain we do convenience foods. I cook when I'm up to it.

My house stays as CLEAN as I can get it. It's a matter of pride. I refuse to let fibro and chronic fatigue to ruin my life.

There are 66 symptoms that go a long with Chronic fatigue and can hit to various degrees or not at all. Everyone is different. I can periodically look up the lists posted online and see how many of them I've had. I've had most of them at one time or the other. It's hard. They thought I had bladder cancer and my acid reflux is bad, irritable bowels, chronic constipation, and I could go on and on. We are living in FALLEN bodies.

I think the hardest thing for me is looking at others that seem well and vibrant and being jealous. I wish I had what they had. But if wishes were horses beggars would ride.

1 mom found this helpful
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K.C.

answers from Wichita on

Hi! I can't say that I have it as hard as you do. I was diagnosed with Fibromyalgia almost 15 years ago when I was 15. Mine has been pretty mild. My energy is hard to deal with especially in the summer when it is worse & in the winter I am incredibly stiff & painful it is very hard to make myself move. I have 2 boys they are 8.5 y/o & 4.5 y/o. We are able to make ends meet with my husbands income. Stress seems to make my fatigue worse. I am a SAHM & do require that my DH & boys help around the house.
The only thing I can suggest is to make sure that your family helps around the house. If mine didn't then a lot would not get done as I can't do it all myself. Also prayer. God is working through us with our difficult conditions, we must trust in him to help us & give us the strength to go on.

God bless!

1 mom found this helpful
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R.C.

answers from Dayton on

L.,
My mom suffered with Fibro for YEARS, before she was diagnosed. She hurt so much on some days she did not get out of bed. The fatigue only made things worse. She would try to plan something fun and seemed like this would always keep her from living her life. Once she was diagnosed there was little any doctor offered her, and those suggestions did not help. Last year my mom found this plan that has almost cured her ( http://www.fibromyalgiatreatment.com/ ). I say almost because all of her symptoms are not gone but she can manage them she has a new lease on life. She is working again and she is able to enjoy her life. She can go to watch her grandchildren play sports, clean her house, and do all the things she used to do before the pain began. I pass this on to you and the other moms in the hopes it may bring you some relief or give you your life back. It took my mom about four months to follow the steps to implement but it was so worth it. If you are interested and want to talk to her about her experience I'm sure she would talk to you. This is not a marketing scheme, someone helped her and she wants to help others. As a child who has watched her mother suffer for so long I pass this on to you so that your children can have their mom back. R.'

1 mom found this helpful
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M.R.

answers from Kansas City on

Just barely some days. Diagnosed with fibro almost 9 years ago. We have a fun loving, high energy two year old whom I totally adore but also wears me out. I started seeing a new dr in march who does more integrative medicine. He works with a dietician and a physical therapist. I started several supplements and have seen an improvement in my energy. The pain and stiffness have improved slightly. Phytisone is the one I take for energy. You can buy it online. I also take a good quality fish oil, and a supplement called fibroplex from metagenics company. Have you had your vitamin D levels checked? Mine were low and I now take a vit d supplement.

Sometimes I get really tired of being sick and tired. I'm I'm fed up with seeing so many different dr's who have no idea what it's like or assume ur a hypochonriac or a drug seeker. But I don't want to be on drugs. That's why I haven't tried all the new fibro drugs bc I want to maybe have another child. On my really bad days I try to tell myself that this too shall pass and there are many illnesses far worse than fibromyalgia. I have to let some things slide which is really hard for me since I have a perfectionist nature. I pray a lot too. I know I feel better when I eat better and exercise but that is a vicious cycle bc when I feel poorly, I eat poorly and don't want to exercise. I tell myself I'm going to walk five minutes and usually after I get going I feel like doing more.

I'm not sure if any of this will helps you but I pray it does. I think a lot of the sadness that comes from this is just admitting there are some things you can't do anymore. Like maybe singing professionally. You may need to put a limit on that. Good luck and God bless. Let go and let God :). Hugs (gentle of course so you don't feel bruised after :)

1 mom found this helpful
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G.B.

answers from Boise on

My daughter has all the symptoms of Chronic fatigue. She gets alot of pain and loss of energy.
I have been doing research on her for years.
I think I might have finally come up with the reason. it might have something to do with not producing enough steriod hormones. These hormones are produced by the adrenal glands and thyroid. She had a chronic bladder/Kidney infection when she was little. The kidneys share drain tubes with the adrenal gland. So the Adrenals can be damaged by a bladder infection that travels up to the kidney and does not get taken care of properly. She also had mega antibiotics (7 does in 3 years) which grow candida and contriburte to CFS.

You should consider having a 24 hour cortisol test (not just an AM cortisol test). The 24 hr saliva test will test your cortisol level at three different times of the day. A break in the diurnal pattern signals problems.

Addison's disease is what i beleive she has. Look up the symptoms online and see if it jells with yours.

I am giving her licorice (it can replace the missing cortisol) b5, magnesium and iodine. So far so good, but she is only on day 2.

ps...we just read the book "from fatigue to fantastic" we checked it out of the Library. The docotr who wrote it claims RIBOSE and magnesium can help.

1 mom found this helpful

T.M.

answers from Philadelphia on

Hi L.,
I understand your situation. I have MS and chronic fatigue is my biggest challenge. I have 3 young children and my husband works about 60-70 hours a week. Therefore, most of the child rearing and housework is my responsibility. I'm not complaining though because him working those extra hours allows me to stay home with the kiddos!
Anyway, a little over a year ago I started taking a non FDA approved drug called Low Dose Naltrexone (LDN) for my MS and stopped taking the FDA aproved drug Copaxone. LDN has totally changed my life. The good news is that they use it to treat many many autoimmune diseases including Fibromyalgia. I can't tell you how much my fatigue has decreased since starting the LDN and although I do still suffer a little from it, it is minimal. I highly recommend that you look this drug up. Google Low Dose Naltrexone and you will get all the info you need. The reason this drug is not FDA approved is because clinical trials are extremely expensive but the drug is extremely inexpensive. It's just not cost effective for the drug companies to pick up.
Anyway, please I encourage you to look into this drug. It has stopped my MS dead in it's tracks. No more exacerbations. Granted the damage that is already done is still there...no more damage is happening!
If you have any questions for me please feel free to message me and I will be happy to help you. I feel like it is my duty to advocate for this drug to the people who need it because of how much it has changed my life!

www.lowdosenaltrexone.org

1 mom found this helpful
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D.P.

answers from Phoenix on

HI :)
I feel for you and understand.....there is so much to write and we can talk later but I wanted to share one huge thing that helped me.
10 years ago I was diagnosed with fibro (in my 20's).....it was a long road but found a homeopath that helped me and the biggest thing was taking out wheat and gluten......Now 10 years later with the help of my homoepath and diet changes I have NO symptoms of Fibro.
My mom also realized she had fibro and did not realize what it was until I was diagnosed...she suffered terribly....but now after a year with out wheat and gluten she is doing amazing too!!!

If you live in AZ I can help you find docs and give you ideas on small steps leading to a healthier you. I know you are overhwhelmed and dont need more on your plate so lets take baby steps:)
I understand the finance part so you can do this but it will take some changes and small steps. There is hope.....I just had a baby too and without sleep it is amazing how well I am doing!!!!
Hang in there- there is a way:)
D.

1 mom found this helpful
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