Is This Chronic Fatigue

[sore joints]

Good morning everyone!

I'm having a horrifically bad day. I've been having a flare up for the last few weeks and my fatigue is just unbearable today and I actually had a good sleep last night. I woke w/ a migraine and complete and utter exhaustion. Joint and bone pain are really getting to me. Just when I think the flare up has passed, one or more of my bones start throbbing. I am so tired I can barely do much more than look after my little ones. My house is a disaster. I'm sure I'm tired b/c of my anemia. I booked a doctor's appt. for later this morning but I don't even know what to ask them for. I just can't continue like this. Could this be chronic fatigue and how do I deal with it. I'm trying to prepare to go gluten-free in two weeks but I don't even have the energy to do that. Any support would be greatly welcomed.

Alison

[NicoleAJ]

This is strange. I'm having similar symptoms. I've had a migraine since last Monday (not yesterday but the week before). My joints and muscles in my neck, shoulders, and back hurt as much as they did the day after each of the two concussions I've had during my life. In addition, the lymph nodes on the back of my head are extremely swollen. I've also been sleeping at least 15 hours a day between nightly sleep and naps. The doctor tested me for lyme disease (since I've been camping in PA), and did a CBC and inflammation test, but these have all come back normal. I'm on some serious antibiotics, but I just keep getting worse every day. If you find out what is wrong definitely let me know. I have another appointment on Thursday (the third in two weeks). If these symptoms sound familiar to anyone, please let me know.

[sore joints]

Hi Nicole,

Thanks for the reply. What is lyme disease. A few people have mentioned it to me and I really don't know much about it. Any ideas?

Alison

[ArtGirl]

Sorry you're feeling so bad. I'm sure some others will have some good advice to you, but I want to relate my experience and maybe something will help you.

I had fibromyalgia (notice "had") several years ago. Fortunately, I stumbled into a support group that led people to getting well. Not just fibromyalgia, but chronic fatigue syndrome also (they are most likely two sides of the same coin). The speaker at the time was an MD and who had CFS his last year in medical school. He started educating himself and developed a treatment protocal that addressed the underlying cause of the symptoms of FMS/CFS using a more natural treatment with supplementation and diet changes. Within another year was much better. He later ran a double-blind study in treating FMS/CFS and wrote a book. It is very helpful.

But, the most helpful thing for me was the Getting-Well Support Group that I attended. The support group is not connected to any hospital or any medical group. It was started by a woman who herself reversed FMS and wanted to help others. I learned very practical things to do for myself and with their help and support, eventually came out of the fibro-fog and pain and have been pretty much symptom-free for at least 4 years (unless I go back to bad eating habits).

The support group instructs people to immediately stop eating any white flour* or sugar (including honey and sweet fruits), carbonated beverages (the phosphates leach calcium from your bones), coffee (not because of the cafein but because the coffee plant is the most highly chemically sprayed agricultural plant in the world and you're getting that along with the coffee), and to begin eating vegetables and lean meats, preferably organic, and cutting back on legumes and high-starch vegetables such as potatoes.

* of course, since you're on this forum, you would be eliminating gluten, as well.

During the support group meetings people are educated to understand that FMS and CFS are not diseases in themselves but an indicator that something else is wrong. Sometimes just cleaning up the diet relieves symptoms, but often there is an underlying condition that is compromising the immune system and that must be found and corrected. In my case it was food allergies and, of course, gluten, but I didn't fully understand the gluten connection that at the time. I quit eating the offending foods and began building up my immune system through supplements and gradually increasing exercise helped me a lot. One of the most striking things for me was taking magnesium. After about three weeks of taking this, along with calcium to balance it, I suddenly became aware that I no longer was suffering from the constand headaches and the stabbing pains in my knees had ceased. The fatigue took longer to recover from, and I think it was more directly related sleep deprevation than anything else. My neighbor has been suffering from FMS and CFS because of mercury toxicity - she's been going through the chelation process but it will probably be another year before she is fully recovered.

One thing that was stressed in the support group meetings is that one cannot fully recover from FMS or CFS by only taking prescription drugs. This is not easy to do at first, but eventually, as the immune system heals, one can begin tapering down. I don't want to offend anyone, but medical doctors usually don't know what to do with people with FMS or CFS and are so drug thearpy oriented that they just don't consider that a lifestyle change and diet could make a difference. One has to take their health into their own hands and do the research. Sad, but true.

I have seen people who were barely able to crawl to the meetings because of fatigue and pain, who were in tears and a complete basket case during the meeting, who felt hope for the first time in seeing others who were on the road to getting well - these same people, three or six months later had begun to get their life back and were themselves an inspiration to other newcomers. There was one man I remember who was at the point of death he was so weak who gradually got better and two years later was a picture of health.

The book is: From Fatigue to Fantastic by Jacob Teitelbaum. The support group, which has grown into a non-profit organization, Fibromyalgia Coalition, has a website with lots of good information: www.fibrocoalition.org Read Yvonne's testimony.

Well, this has gotten to be rather lengthy so I'll stop. Just wanted to give you something to think about.

Why, may I ask, are you waiting two weeks to go gluten free? Because of having tests done?

If you must eat gluten, then try cutting out the sugar and sodas and coffee. That should give you some relief. Drink lots of purified water.

There is hope for recovery.

[lindalee]

Dr. Teitelbaum's web site now is www.fibroandfatigue.com. What kind fo water are you drinking? I never know what kind to get. LL

[NicoleAJ]

Lyme disease is carried by ticks. If you get bitten by an infected tick, you'll often have some type of rash. Over time you will develop headache, fatigue, nausea, swollen lymph nodes, etc. It can become very serious, so it's important to catch it early. Here's the CDC website dedicated to lyme disease.

Open Original Shared Link

[Mia H]

I've had chronic fatige for at least 10-15 years. It got very bad after my first daughter was born 4 1/2 years ago. I started to have the feeling of literally wearing a lead suit. I felt so heavy, it was hard to pick up toys off the floor. I would wake up more tired than when I went to bed. In the morning I was puffy, hung over feeling, stuffy.

Long story short, I tested with Enterolab.com and learned I was gluten and casein intolerant. I have been gluten free 2 1/2 months and casein free 1 1 /2 months. I am slowly starting to feel better. The lead suits are gone, I wake up without the puffy hangover. The rage is gone. The brain fog is lifting. My memory is coming back.

Don't give up, there is hope! Don't get discouraged. When you do give up the gluten it can take weeks to months to feel better. Be patient. Learn about hidden ways of getting glutened. (toasters, communion, cross contamination)

We are here with you and understand where you are coming from.

Mia

[Lymetoo]

Don't assume you don't have Lyme just because a test came back negative. It's just like the specialty labs for celiac. Not all labs are created equal!

If you are in a lyme endemic area like PA then you really need to be tested through Igenex Lab in CA.

go to www.igenex.com and/or Open Original Shared Link for more information. [go to the Flash Discussion for help. ] Don't trust the CDC for the correct information. Hard to believe, but it's true.

I can give you tons more info if you want it. I was misdiagnosed for a LONG time and Lyme has taken alot from me. I don't want the same thing to happen to others. It can destroy your life if not caught early.

One thing that was stressed in the support group meetings is that one cannot fully recover from FMS or CFS by only taking prescription drugs. This is not easy to do at first, but eventually, as the immune system heals, one can begin tapering down. I don't want to offend anyone, but medical doctors usually don't know what to do with people with FMS or CFS and are so drug thearpy oriented that they just don't consider that a lifestyle change and diet could make a difference. One has to take their health into their own hands and do the research. Sad, but true.

I agree!! I have been slowly eliminating meds over the past two years, following treatment for Lyme disease. I have found a natural supplement which has changed my life and helped me get rid of at least 7 different drugs!

Now after finding that gluten is a problem for me as well, I hope to eliminate some more!!!!

Get after that gluten-free diet....It ROCKS!

[ArtGirl]

What kind fo water are you drinking? I never know what kind to get. LL

Nothing special, just purified. My husband and I buy locally purified water from Brookfield's by the gallon ($.25 a gallon). We have our own 3-gal. and 1-gal. containers and fill them up at their location. They use reverse osmosis and some other thing I can't remember exactly what (ultraviolet light?) - gets rid of a lot of bacteria, clorine and other chemicals. They put back some minerals so the water tastes good. They start with tap water, which here in the midwest is nasty tasting stuff - but when they get through with it it's pretty good, not quite as nice as spring water, though.

[azmom3]

Was mono ruled out? My 7 1/2 year old just found out she had mono from a quick blood test. She had been extremely tired for a couple months. She was in a lot of activities and has always been a napper, so I didn't think much of it. But then she started complaining of headaches every day, then stomache pain and sore throats. Pretty soon, it seemed like almost everything was hurting and I figured I better have her seen. By the way, she would go in and out of these symptoms, mostly having them, but there were times when she seemed fine, too. And if you're wondering why I didnt' take her to the dr. sooner, it's because #1, she's the biggest drama queen in the world, and #2, she really likes our dr. and has faked being sick before so she can go see him. She missed a ton of school and we took her out of all her activities and let her nap several times a day. She's still not great, but definitely better. Maybe her fatigue is linked to gluten??? Bread in any form/flavor is by far her favorite food. Hmmm....

Anyways, good luck to you!

[lindalee]

Nothing special, just purified. My husband and I buy locally purified water from Brookfield's by the gallon ($.25 a gallon). We have our own 3-gal. and 1-gal. containers and fill them up at their location. They use reverse osmosis and some other thing I can't remember exactly what (ultraviolet light?) - gets rid of a lot of bacteria, clorine and other chemicals. They put back some minerals so the water tastes good. They start with tap water, which here in the midwest is nasty tasting stuff - but when they get through with it it's pretty good, not quite as nice as spring water, though.

Thanks Valda, I will try that. Does anyone know about the tap water from a refrigerator? LL

[jerseyangel]

Thanks Valda, I will try that. Does anyone know about the tap water from a refrigerator? LL

I have a refrigerator that has a water filter built in. I was still getting sick a lot, even though I have eliminated a lot of foods from my diet. I came across some information (from Andrea, on another thread) and found out that those filters use coconut hulls in the filtering process. I am very sensitive to coconut. Since I have switched to spring water (Poland Spring), my symptoms have diminished.

[ravenwoodglass]

Was mono ruled out? My 7 1/2 year old just found out she had mono from a quick blood test. She had been extremely tired for a couple months. She was in a lot of activities and has always been a napper, so I didn't think much of it. But then she started complaining of headaches every day, then stomache pain and sore throats. Pretty soon, it seemed like almost everything was hurting and I figured I better have her seen. By the way, she would go in and out of these symptoms, mostly having them, but there were times when she seemed fine, too. And if you're wondering why I didnt' take her to the dr. sooner, it's because #1, she's the biggest drama queen in the world, and #2, she really likes our dr. and has faked being sick before so she can go see him. She missed a ton of school and we took her out of all her activities and let her nap several times a day. She's still not great, but definitely better. Maybe her fatigue is linked to gluten??? Bread in any form/flavor is by far her favorite food. Hmmm....

Anyways, good luck to you!

This post made me kind of sad. I heard the same drama queen, wants to be sick sort of thing from my family and doctors all through my childhood and well into my adult years. I really hope you get her throughly evaluated for celiac and that you also give her a few months on a gluten-free trial. Things may become really bad for her at puberty if you don't.

[Nancym]

I just wanted to add that lots of autoimmune conditions have fatigue and joint pain as a major component. Eye problems too. Write down every little odd symptom you have and give it to your doctor. For me it was fatigue, feeling cold, sleeping a lot, eye pain and visual disturbances, joint/muscle/tendon pain, and some other stuff. My doctor sent me to a rheumatologist who diagnosed me with Ankylosing Spondylitis. I'm doing much better since going gluten/dairy free and taking some meds.

[NicoleAJ]

Don't assume you don't have Lyme just because a test came back negative. It's just like the specialty labs for celiac. Not all labs are created equal!

If you are in a lyme endemic area like PA then you really need to be tested through Igenex Lab in CA.

go to www.igenex.com and/or Open Original Shared Link for more information. [go to the Flash Discussion for help. ] Don't trust the CDC for the correct information. Hard to believe, but it's true.

I can give you tons more info if you want it. I was misdiagnosed for a LONG time and Lyme has taken alot from me. I don't want the same thing to happen to others. It can destroy your life if not caught early.

I agree!! I have been slowly eliminating meds over the past two years, following treatment for Lyme disease. I have found a natural supplement which has changed my life and helped me get rid of at least 7 different drugs!

Now after finding that gluten is a problem for me as well, I hope to eliminate some more!!!!

Get after that gluten-free diet....It ROCKS!

I certainly hope I was not misdiagnosed as you were. However, the doxycycline has done nothing to help--I've just continued to get sicker and sicker, so the doctor believes that it is viral rather than bacterial. He thinks I caught a virus that has caused my spine to swell, strangling some of the nerves in there.

[lindalee]

I have a refrigerator that has a water filter built in. I was still getting sick a lot, even though I have eliminated a lot of foods from my diet. I came across some information (from Andrea, on another thread) and found out that those filters use coconut hulls in the filtering process. I am very sensitive to coconut. Since I have switched to spring water (Poland Spring), my symptoms have diminished.

Thanks Patti, My ref. was here when I bought the house. Don't even know if it has a filter. Love your Picture!