14 replies to this topic

[WolfMom]

Howdy Gang,

I was diagnosed last May with CFS after 20 years of a health roller coaster. I am trying to recover and get this bad boy into some sort of remission and was wondering if there were any local Folsomites who have been similarly diagnosed who are really working hard at getting back to health. I would love to hear your experiences and maybe we can even meet to share tips, etc. I've been blogging a little bit about what I am doing (latest exploit here)but still feel like there is so much to learn.

Anyway, just pinging to see if anyone else is in the same rowboat and how there are doing atthe whole rowing thing...

[SacKen]

I wasn't specifically diagnosed with CFS, but I was diagnosed with Ankylosing Spondylitis a couple of years ago (scary sounding arthritis related disease with a primary focus on the spine/pelvis area). It causes Fibromyalgia and CFS symptoms along with the joint pain throughout my body. Weeeee!

Being that there's not much I can do about getting rid of it, I've just learned to live with it. You know, mind over matter stuff, with a little help from Tylenol. I'm always going to be in some sort of pain 24/7 and will always feel fatigued to some extent. Unless it is a physical limitation, like my back is inflamed, it's just pain and fatigue that I try to ignore.

Two things I've found that help keep everything manageable is regular exercise and massage. Exercise is an ironic one because the exercise itself makes me sore and tired immediately after, but better in the long run. With massage, if I go more than 3-4 weeks, I have a significant increase in all symptoms.

I need to get better about stretching and maybe doing yoga. I just hate it and never seem to remember or find the time to do it.

[AMETHYST PRODUCTIVITY]

Ditto on the aspartame, I used to have a headache every day in the afternoon. The one constant was a diet coke with lunch. Stopped the diet coke and those headaches stopped. I do use sweet and low which doesn't cause any problems for me.

Diet, sleep and exercise are the great triumvirate. A good diet of healthy, natural food is the best thing you can do. My rule, if you can use a coupon to buy something, it's usually not good for you. Organic is usually my choice but can be pricy for some. Stick to fresh fruits and vegetables, non-processed foods, cut back on sugar (I have a sweet tooth so I doubt I could cut it out completely), drink alcohol only in moderation.

Sleep: get 8 hours of sleep! The tv, internet, work, etc can wait for another day.

Exercise: it really does help although I'm the first to admit, it's hard to stay motivated. For CFS, something like yoga would probably be really helpful.

[caligirlz]

Yes, fibromyalgia (CFS is a component).....mine developed after my 2nd back surgery over 10 years ago. I believe that I was always at risk. I'm at work so I can't share much at the moment...

But, I've been working with an organization out of Georgia for 2 years, and I've had significant change in the symptomology.

I've also been working with Body Concepts, doing Pilates & PT for the past year, and they are helping me immensely with the structural issues.

[WolfMom]

Sorry to hear of your struggle with this. I don't have this condition, and wonder why so many today are being diagnosed with it.

I do have a back condition due to a couple of accidents which injured my back when I was younger and have knee pain. I take Glucosamine Chondroitin and it works like magic! I can now bend and go up my stairs without any pain. Most don't believe it works that good, but one must take it for a couple of weeks before it kicks in and then they need to take it regularly, everyday. I stopped taking my medication after I started taking Glucosamine Chondroitin. I doctor told me it wouldn't do me any good. He was wrong.

I've often thought that going with an organic diet is the best thing to avoid diseases that are chronic. Also, taking vitamins is a good idea, as nobody gets the vitamins they need in the food we eat today.

Lately, my husband and I noticed we were getting headaches everyday and couldn't understand why. Had we gone to the doctor with this complaint, who knows what he would have diagnosed as the problem. After doing some close evaluation of what we had been doing and eating, we tried not chewing the "Extra" gum we chewed daily. Turns out, the Aspartame sweetener in that gum causes headaches, along with many other health problems. We stopped chewing the gum, and no more headaches! Now we chew "Glee" gum, which is all natural.

Artificial sweeteners are very bad for you as well as other artificial additives in food. Some people are more sensitive to them than others. And if I were diagnosed with an ailment like CFS, I'd sure be looking at everything I ate and came in contact with.

A friend of mine had new flooring put in and got sick from the fumes, but didn't know that was the cause. She went to the doctor and he placed her on a strong medication which made things worse. Her Mom told her to open her windows everyday and allow the fresh air to circulate through the house. She started feeling better immediately! No medication needed!

Doctors have an average of 15 minutes to make a diagnoses and they do so by referring to the Physicians Hand Book. Sometimes, they diagnose wrong.

I've never had a doctor tell me to eat organic or take vitamins. Never had them ask me what I was doing different that could be making me sick. It has always been my experience to have them stick to the old standard of a quick diagnosis and hand me a prescription.

If you have a high stress job or small children, I'd advise you to take a nap every afternoon. I have found that a one and a half hour nap is perfect to recharge me, but more or less than that is too much or too little. I've heard that in Japan that is a standard for workers.

Well, I had a very cool long response to this all written and then the toddler that doesn't like to let me sleep hit the ESC key and I lost it all. TIme for a nap.

[mary56]

Howdy Gang,

I was diagnosed last May with CFS after 20 years of a health roller coaster. I am trying to recover and get this bad boy into some sort of remission and was wondering if there were any local Folsomites who have been similarly diagnosed who are really working hard at getting back to health. I would love to hear your experiences and maybe we can even meet to share tips, etc. I've been blogging a little bit about what I am doing (latest exploit here)but still feel like there is so much to learn.

Anyway, just pinging to see if anyone else is in the same rowboat and how there are doing atthe whole rowing thing...

I am not your age, I am 60 years of age. About 3 years ago something happened to me that no one could pinpoint.. Dizziness, Fatigue, Heart Palps, Severe Headaches, loss of weight, no energy. Literally had to stay in bed for 3 months. I was working FT at the time and have always been a type A personality. Anyway, after every test, CT, MRI, they came up with CFS. I had to quit work and I have never been the same. I have more energy then I used to, however, have no stamina whatsoever. They did find my thyroid was a little out of whack but not enough to put me on meds. For me, CFS is a catch all phrase for MD's because IMO they do cannot figure out what is really wrong. I did try accupuncture and it really helped. So you may want to try that. I went to Anne Priest at Folsom Family Medicine, she is amazing...I am currently going to a Endo in May to see if I can start a little thyroid just to get some energy. Also, I went from a 135 to 165, but probably due to lack of exercise. Also, have done counseling. I am going to start a exercise program but slowly as it has been 3 plus years. I used to feel great after I exercised, but not now...Good luck in your quest, as it is a long hard road. It is very hard to go thru something when you really do not understand why and sometimes your family does not understand. You look normal, but do not feel it...So I truly understand.

[WolfMom]

Thanks! I am very interested in acupuncture so the recommendation is great. It certainly not fun having an "invisible disability".

[AMETHYST PRODUCTIVITY]

It certainly not fun having an "invisible disability".

Exactly my problem. I have fibromyalgia (which also involves CFS) and there are times I couldn't get off the couch if the house were on fire. For example, today, everything hurts. I mean everything. I'm doing my darnedest to fight through the day and I'm going to try and get to a yoga class to help as well but I get so frustrated I just don't know if I should scream or cry.

[WolfMom]

Exactly my problem. I have fibromyalgia (which also involves CFS) and there are times I couldn't get off the couch if the house were on fire. For example, today, everything hurts. I mean everything. I'm doing my darnedest to fight through the day and I'm going to try and get to a yoga class to help as well but I get so frustrated I just don't know if I should scream or cry.

Or that fact that we need exercise to try and keep ourselves functioning but that the exercise can often leave us so exhausted that we can't function. Such a catch 22. I am so careful about how I exercise now as I have a big family to care for. It makes my progress tortuously slow and heaven forbid I should get sick and I backslide from months of slow progress.

[asbestoshills]

Perhaps you suffer from undiagnosed depression. It seems so many people suffer from joint pain that is called CFS. Makes you wonder if there is a new disease caused by low level radiation? Most of the people I know who get diagnosed use computers, cell phones etc. 10 hrs. plus per day.

[Barb J]

Perhaps you suffer from undiagnosed depression.

I hope you mean in addition to the CFS????? Too often people with autoimmune diseases or "silent" diseases are told they have psychological problems because doctors can't find a diagnosis. I thought for years I was going crazy until I was diagnosed with Hashimoto's. And my MIL went through the same thing with her Lupus!

I wish I had some help for you Wolfmom. Good luck! A great doctor is a good start.

Barb

[LindaJ]

Hi Wolfmom,
I had CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)-also: Fibromyalgia - it's all the same! for 7 yrs, and then it went away! Well, probably in some kind of remission, because I still had "flare-ups" which have become less over the years. That was 16 yrs ago. I do believe it is some kind of immune dysfunction because everything I did to boost my immune system made it worse. I went to support groups and the medications they were taking weren't doing any good, so I just treated my symptoms. Mild exercise, an aspirin now and then for headache, and much more, of course. I was taking ativan which helped but my doctor took me off it - afraid I would get addicted. Now I think that was a good idea. I was a single mom of 2 children and even worked full time, some of that time. I had been working a very stressful, physically demanding job when I quit and it was just a couple of months after that when I began to feel better. I thought it was just temporary but it continued! Other people have recovered but the length people have it varies. I guess I was lucky.
Listen to your body (and not what others say) and don't overdue yourself- emotionally or physically!. I know it's frustrating having so much to do and not being able to do it and knowbody understands. My family didn't and a cardiologist I went to didn't even believe there was such a condition. Now I hear the diagnosis much more often but there doesn't seem to be a cause or cure, yet. If you have any questions, reply or send to my email:
ljeana57@gmail.com
Take care,
Linda

[Dollsnstuff2]

I've been in the medical and chiropractic community for many years. And I was diagnosed with Epstein-Barr (also known as CFS), a long-term virus related to Mono many years ago. I still get symptoms when I don't get proper sleep and a good diet, when my stress levels went nuts. Unfortunately, medicine didn't help. And the more tired and stressed I got, the worse any other symptoms were, too. Anti-depression drugs make the exhaustion worse and make it difficult to get motivated to even get up. The symptoms cascaded and they just get worse. Unfortunately, the regular medical community has not been educated in the nutrition side of health--only finding pathologies (illness, injury or disease) and they are fed new information by the drug companies who are interested in getting people to take their new drugs. (In medical office for 12 years.. saw hundreds of drug reps.) They don't deal in good diet, exercise and lifestyle changes.
Rather than getting more medications, that have many negative side-effects, you might want to get checked out by a Naturopath. (I am not related to any of these. My husband is a Chiropractor and Functional Diagnostic Medicine physician here in Folsom, but I would recommend the Naturopath first.) The naturopath will do bloodwork and a full exam. They will correlate the labs, personal and medical history and exam info and give you recommendations for making NATURAL changes to improve your health. It will include diet-whole, raw foods and good fats and meats, supplements, possible vitamin infusions and other options. I did this with my husband's recommendations: supplements that specifically target immune, adrenal and hormonal systems, more exercise (I walk as much as I can and garden rather vigorously--yes, that can be done) and reduced my stress levels. We have found that many of our patients suffer from the increased to intolerable stress which leads to a whole array of problems, including weight gain, CFS, heart, BP and other physical problems.
To eliminate many of the CFS symptoms really need a permanent lifestyle change-- nutrition, exercise, necessary supplements, stress reduction. I'm still in the process.

Good luck to you.