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Any advice for a 50 year old who has just been diagnosed with Chronic Fatigue Syndrome?
Teresa from Brisbane, Australia
Hi! Long story short, I have been to so many doctors over the last 22 years. All the symptoms of CFS, Fibro, Endocrine System, depression, and you know, the list goes on, and on, and on! Some doctors were truly sympathetic but had no clue. All the tests came out ok or low normal, whatever "normal" is. After a bout with a particular nasty virus last spring, I finally just started researching my own symptoms and asking for the appropriate testing. (I fired 3 doctors along the way. You must remember that YOU are the consumer in this process.)
Your symptoms match mine to the T. Ask for a THYROID ANTIBODIES test along with your TSH, free T4 and free T3. These can be done at the same time and are very inexpensive. As it turns out, I have a very under diagnosed disease called Hashimoto's Thyroid. This disease causes the body to think that the thyroid is a foreign object and works overtime trying to get rid of the object (like someone trying to reject a kidney after transplant). It causes all the joint and muscle pain, swelling, depression, anxiety, not to mention weight gain, and the list goes on and on. Hashimoto's caused tumors in my thyroid and I had to have my thyroid removed.
Cancer/1st stage, totally curable. I don't even want to think what could have happened if I hadn't become persistent and demanding with my doctors. There is much information on the internet concerning Hashimoto's so I won't even try to explain it all. Good luck and God Bless, Vickie
I will turn 60 this September and have Fibromyalgia and Chronic Fatigue Sydrome. I don't let the diagnosis get me down. I still carry on an active life style and daily exercise to keep my weight under control. I'm also eating much more healthier than I did six years ago. I used to eat anything and everything and I no longer do that. For health reasons I became a vegetarian.
No two patients diagnosed with Fibromyalgia/Chronic Fatigue Syndrome are alike.
Didn't they just discover that the decompression chambers used for divers cured fibromilgia? I'm sure I saw it on the news. Try CTV/CFRN.ca
Thank you everyone for the feedback. Have been tested for diabetes, thyroid, iron deficiency etc. My doctor says anti depressants are a suggestion, but he doesn't really want to start me on them and I'm not that keen to go on them. He has suggested evening primrose oil caps which I have bought and have been taking 2 a day for about 10 days. It is early days but I do feel as though I am improving so will give it a go for a while otherwise will find out more about the sleep apnea haven't heard of that machine but will make some inquiries once again. Thank you everyone.
I can commiserate with you. I have fibromyalgia which has symptoms of chronic fatigue. I doubt that your condition can be cured. However, it is possible to have a somewhat normal and full life. Rest as much as you can. Don't overextend yourself too much.
Please rule out thyroid problems as well as sleep disorder. We have sleep apnea in my family and that makes you really fatigued all the time. Try to exercise a little every day. It helps. Just walk a little or perhaps swim if you are able. I do well with www.flylady.net. She offers coping skills for many issues in life. Her main focus is housekeeping, but it includes nutrition, dressing well, and pampering yourself. This is a plan she came up with herself when she had depression. It helps me.
Warm wishes always.
Sorry in advance for the long post but I want to try to give you as much info as I have found since I only wish someone would have gave it to me. I would just send this privately if possible but maybe someone else struggling with CFS or Fibromyalgia can read it here and find hope.
Don't let people tell you it is not a "real" disease or something the doc says you have because he is too lazy to find out what you have. The Centers for Disease Control and US social security office recognize it is FOR REAL and causing pain and suffering to millions of people in the US and around the world. I am 46 now and have had CFS and Fibro probably since I was 13 yrs old. They didn't know what it was when I first started getting sick and always told me it was "all in my head".
I do believe these diseases can come from viral, chemical or injury causes but you can do things to feel better. I hurt my back at 13 and was on high doses of steroids that they never tapered me off of but just suddenly stopped them. Steroids can cause all kinds of havoc even with tapering them properly. When you don't taper them they can cause adrenal failure which supposedly only lasts a short while. I think that started a cascade of organ problems including my thyroid, pancreas, and adrenal glands. My thyroid took 16 years to be correctly diagnosed because no doctor ever did the $12.00 thyroid test or the more sophisticated T3 T4 tests. Then they put me on Synthroid. Contrary to a lot of posts here, Synthroid doesn't work as well as Levoxyl on most people. Also the generic Levoxyl doesn't work as well.
DON'T rely on just your doc for your thyroid, you can take your basal temperature (underarm)with an old fashioned mercury thermometer first thing in the morning before getting out of bed. Do this starting the second day of your menstrual period or any morning if post menopausal. If your temperature is averaging below 97 or so for more than 4-5 days in a row you are probably low thyroid. Here is a good website to find out more about basal temp:
Thank God some doctors are recognizing that just because your blood test shows your thyroid level to be "normal" doesn't mean your body can use the thyroid hormone floating around in the blood. Some of us are thyroid hormone resistant like diabetics who are insulin resistant. I have many friends who it also took years to get their doctor to prescribe thyroid meds to them because their blood test showed "normal" even though they had every symptom of low thyroid.
I googled Australian water treatment and found that your water treatments include fluoride and chlorine which are both toxic to life in general and human organs in particular. Here in the States we have an epidemic of diabetes, heart disease, thyroid disorders, cancer and obesity. In humans, fluoride and chlorine are easily mistaken for iodine which the thyroid needs on a daily basis. These chemicals block up the receptors for iodine so even if you actually get enough iodine daily it won't be used. The first thing you do in the morning is brush your teeth with fluoridated toothpaste and then rinse with chlorinated fluoridated water. This causes your thyroid to become poisoned double time.
Chlorine is also toxic to the pancreas islet cells which will eventually stop making insulin which causes type 2 diabetes. Chlorine has been known to cause atherosclerosis (hardening of the arteries) since the first quarter of the last century. That is when they discovered young 20 something G.I.s dying of heart attacks and found their arteries were all clogged up from drinking heavily chlorinated water.
Both of these substances are waste products of the chemical industry that they used to have to pay to get rid of. Now the charge us to kill us with them. Many European countries and Japan won't use them but stupid U.S. is lead by the highest bidder not the health of their citizens. Japan used our water systems after the war and found within 20 years a HUGE increase of previously non-existant heart disease. They stopped using our methods. If you google fluoride and chlorine you will never want to use fluoridated toothpaste or drink chlorinated tapwater again.
In addition your country uses aluminum in its wastewater treatment plants like the U.S. Aluminum is sooo bad for people but these idiots won't admit it. It helps the solid waste to sink so they can clean the wastewater cheaper so who cares if it might be making Alzheimer's patients out of all of us. Fluoride and aluminum bind and human bodies will try desperately to put them in an unnecessary fatty area of the body. Guess where that is? Your brain. They have autopsied Alzheimer's victims and found aluminum/fluoride plague deposits in their brains. What are toothpaste tubes made out of? Aluminum. Fluoride could possible leech the aluminum out of the tube into your toothpaste. Check your deodorant and stomach medicines too as most contain aluminum. Don't use them if they do. I'd rather be a little stinky with indigestion and have a clearer mind and body.
Since April 2007 I started using non fluoride toothpaste and natural springwater. Many people argue that natural spring water contains fluoride. It does but it is a different kind of fluoride than the one in toothpaste and being used in water treatment facilities. The kind in toothpaste and water now was not the original fluoride that was tested waaay back when they first started to use it. Fluoride used to be used in higher doses as a medicine to kill overactive thyroids. Since I quit, my CFS and fibro have improved greatly and my Levoxyl dose has come down from 150mcg to 100mcg.
In the past 9 months I was also dxd with Type 2 diabetes. I beat it with evening primrose 1000 4xday, alpha lipoic acid 200 4xday, chromium 200 day. I also began taking ginkgo bilboa 3 times daily, and 300mcg of melatonin at 8:30pm or 9:00pm. I now swear by this combination for my CFS and fibro. The evening primrose and alpha lipoic acid helps tremendously with the pain from the fibro and I have much less flareups. The ginkgo and alpha lipoic helps with opening up the brain capillaries for less memory problems and seems to have helped with circulation problems like numb and tingly feet and legs. The melatonin helps you to sleep and it is converted to serotonin in the morning. This is why we are depressed we are generally low in melatonin and get lower as we age so there isn't anything to convert to serotonin (the happy brain chemical). I sleep so much better most days with this low dosage. I also started a super B and regular vitamin regimen specifically geared to cfs and fibro at around the same time.
I have been put on at least a dozen different antidepressives because my disease was "all in my head". Guess what? Anti-depressives suppress the thyroid even more so you can count on low thyroid once they put you on them. I would suggest you get on the vitamins first. You have to be on them for at least 3 mos to see a difference but what a difference. I was on Prozac for 6 yrs to prevent tension headaches/backaches from stress and got off it 2 mos ago and feel so much better and clear minded. I also suggest getting a full spectrum lamp to help your body to adjust to a natural circadian sleep/wake rhythms if that is a problem. The melatonin will help too but maybe not enough.
Something else to think about is do you have candida or internal parasites? Having CFS means you probably do. If you eradicate them you can get rid of irritable bowel syndrome and yeast infections like I did. You just have to be persistent. I had H. Pylori bacteria in my stomach and that is why I would have diarrhea and constipation in the same day and was highly malnourished. It took 6 treatments until I am finally H. Pylori free. My life is so much easier without having to know where every bathroom is. I also had irritable bladder and had to give up every kind of drink and juice except for occasionally drinking decaf tea or cranberry juice. NO sodas, beer, energy drinks or carbonated/caffienated beverages, they cause calcium loss and that causes other nutritional imbalances in your body.
I don't fall asleep everywhere like I used to and no more headaches. I can take a shower everyday and still have energy to walk 30 min a day with my two dogs and keep house and cook although I still have to limit myself so I don't overdo it. I don't work because I hurt my back again at 39 and I can't sit upright for more than 20-30 minutes without severe pain in my back. Then I have to take pain meds which of course make me more tired. Since I am feeling so much better and clear-minded I am searching now for legitimate work at home computer jobs.
My mother and her mother had fibro, my 42yr old sister and 43yr old brother have CFS. My 25 yr old half sister has Fibro so bad she had to get out on disability from the US Air Force. She didn't even know I had CFS and FM because I never told her. So these diseases possibly can run in families so beware for any kids you have.
People love to tell you to exercise and "just push through the pain" but each of us is different. I couldn't tolerate exercise AT ALL before this past year but all of my sisters and brother can exercise. My 42yr old sis walks 5 miles a day. (But her house is filthy and she never cooks, cleans or does laundry and she sleeps 12 hrs or more a day.) You have to use your own body's reaction to exercise and start SLOW like 5 min once a day and build SLOWLY like do 5 min X 2 a day after a week or two. If you get too tired or are hurting too much skip a day and then start back with less time. It took me a long time to build up to 30 min at a time. I still hurt like heck and am tired like a dog but I do know it is good for me so I do it as often as I feel able at least 4-5 x week.
Well, again sorry for the long post, I hope this helps you. God bless you and don't give up - you will have good days and bad days but God willing more good days than bad.
Hi! Boy, my suggestion is short for once! Check out earthclinic.com.
We've gotten good stuff there about all kinds of illnesses. Good luck, and take care of yourself!
Antidepressants aren't used because your doc thinks it's "all in your head". They're also beneficial in treating fibro symptoms.
Paxil really helps my pain more than any of the pain relievers (which gave me ulcers and chronic stomach problems) ever did. I used to get horrible, agonizing stiff neck pain constantly; now, stiff necks are a rare occurrence for me. All because of Paxil. And that's not all in my head. :-)
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A CFS diagnosis is sometimes a catch-all diagnosis from a doctor who isn't being as conscientious as you may need. Press for more diagnosis, because often a CFS patient turns out to have something harder to diagnose, but fixable! (10/18/2007)
There is CFS/Fibromyalgia magazine, as well as many articles and books on the subjects. There is NO one size fits all remedy but with proper treatment and therapies you will NOT have to sleep your life away. You must learn to manage your time and your energy so that you can prioritize the important hings in your life. Yes, you will have to learn new ways and may have to modify your life, but there is life with CFS or FM. Many hospitals or the CFS/Fibro netweork may be able to lead you to a support group, which will be really helpful, as you can meet others who have "been there-doing that" and doing well. There are even on-line support groups and interactive websites to help. (10/18/2007)
Try having your thyroid checked. They just draw blood sample to check your levels to see if you are over active or underactive. The blood test cost about $15-$20 it will make you so tired and just want to sleep. If you discover you have problems with your thyroid and find the right level of medicine to take you will not believe the change you will see in your return of normal energy level. (10/18/2007)
Debra wrote a couple of articles for ThriftyFun about her coping techniques for dealing with Fibromyalgia, which is similar to Chronic Fatigue Syndrome. Maybe some of her advice would help.
Hi, my 32 yr. old son has fibro & CFS. And yes it was very hard to diagnose. Dr's told him he would have up and down periods. His Dr. put him on anti-viral meds. They took a while to work as he was really sick. But eventually he was able to come off of them and feels great. Now he's starting to feel sick again (tired, etc.) and will go back on the anti-viral. Sorry u have it because it's not a fun way to live. (10/18/2007)
If you are working swing shift (changing shifts 7-3, 3-11, 11-7 etc) that would probably be the worst thing for you!!! I have Fibromyalgia and I did suffer terribly with CFS for many years also. Having and keeping to a regular sleep schedule really helps a lot.
Ditto on getting that thyroid checked!! Taking Synthroid has really helped me.
Overall, expect to have the above mentioned up and down periods.
I also seem to do much better when I eat very little processed food. Plain meats and vegetables and little grain products seem to be best for me. You may have a wheat or egg or other food allergy. Try eliminating a certain food for a couple weeks. If you are allergic you will feel better in a few days. When you add it back you will feel tired again.
Hope this helps! (10/18/2007)
I had anemia and it made me SO TIRED! I didn't know what was wrong until my allergist said it was probably anemia. He tested me and yes, my iron levels were low. Now my regular doctor insists that I do NOT have anemia because my numbers are just above the cut off (and that's because I take a daily iron tablet with vitamin c - you have to have vitamin c to make the iron work).
I finally do not need a nap during the day and almost have enough energy to make it through a full work day. If I'm at home cleaning, I have to take breaks alot, but I don't need a nap any more! YEA! (10/18/2007)
Well I see a lot of other people wrote to you. I have fibromyalgia too. 3 years ago I had applied for social security benefits--I was 41 at the time. I am now 44 and working very hard at a Drs. office about 30 hours per week and I am also a substitute teacher and I work at that about 12 hours per week. Yes, I am VERY tired and SORE. BUT I am working. I hope you are able to get help. (10/18/2007)
I suggested the thyroid function test. And the lady above who said synthroid helped her is 100% correct. Thats what they put me on a right off the bat I began feeling more energy but I do have to recheck my level every 3-4 months in order to see if the mg taken needs to be increased, and so far it has to each time for its something they can not do is just give you a certain dose until you are on it for awhile to see if you need more. But I can tell when I do for my sluggishness will return somewhat.
I tried to take the generic brand of synthroid - no way! I felt like I swallowed air. I could not even lift my arm without feeling like I was just worn out. Although some people can take it I am not one. Synthroid works best, but a little expensive. But feeling normal energy is worth it. I was telling my husband about this post and he reminded me that Sleep apnea (I think I spelled that right) will leave you having those same tired & sleepy symptoms. For he has had it now for 3 yrs. Before he was diagnosed with it he just wanted to sleep all the time. His driving job kept him wanting to fall asleep at the wheel. Finally, he stopped being so stubborn and went for help. That test was suggested and his case of it was so low they could not beleive it. After he got his breathing machine within days he could tell a difference and no more tiredness or sleepiness. Just another suggestion. I hope you find answers that help you.God Bless (10/18/2007)
I practically slept the last 15 years away. I thought that I had Chronic Fatigue Syndrome. I went to Doctors and was told to take iron pills or lose weight, I tried it all. I was so tired that I could hardly wait for the kids to get on the bus and my hubby to work so I could go and lie down. I do have thyroid problems and take synthroid, but even with iron pills, all I wanted to do was sleep.
I would toss and turn and ended up sleeping sitting up and would sleep through the night, but still wake up tired. I got really sick last Christmas and ended up in the hospital and had a blood test, not the usual one, this one is done in a vein or artery in the wrist and it tests the levels of oxygen and carbon dioxide in the blood. My level of oxygen was way to low (58) and my carbon dioxide was extremely high. I was recommended to have a test for sleep apnea.
Sleep apnea is when you stop breathing when you sleep. Most people don't even realize that they do it. The night I was tested I stopped breathing 30 times that night and one was for 125 seconds, I can't even hold my breath that long!I had the test and then went to a sleep lab and found out I have sleep apnea and now sleep with a sleep apnea machine.It is a small machine about the size of a loaf of bread,I keep mine in the drawer in my night stand. I wake up with energy, am not tired anymore during the day. I keep track of my apneas on the machine each day and I have gone from @30 apneas a night to @ 3 a week! The best part is because I have more energy I am losing weight. It's worth asking your doctor about or check out some info on Sleep Apnea on the internet. (10/18/2007)
I want to thank all of you! I did not realize just how many people would send back their input. I am overwhelmed! I do have sleep apnea and use a machime and have been back to the clinic 3x without any improvement!! How ever I will talk to my Dr. about synthroid. She has me on a sleeping pill(uped 3x) and 2 antidepressant pills...I don't feel they are working and she has me talking to a therapist!!!! But maybe synthroid will be my answer. Thankyou all!!!!!! K.P. (10/18/2007)
As you have been reading, a lot of CFS goes hand in hand with FMS (Fibromyalgia).
email me at firstname.lastname@example.org in reference to this site, I will help you get together with support groups that are out there, that can help short step you to alot of things, because of those belonging to these groups world wide, the information is lifesaving. I am also an FMS/CFS/chronic pain support group educator/facillitator
CFS and FMS can be worked through. I have had it all my life, I am 52. I know when and why things happen now, but I can't stop them from happening. I can change the course of severity sometimes.
waiting to hear from you, Grandma Joyce (10/18/2007)
By T&T Grandma
I have had chronic fatigue syndrome also. I have come across this diet in which 80% of the food consumed is from the alkaline foods (raw fruits & vegetables) and the other 20% from the acid foods (meats and cooked vegetables) I have been on the diet for a month and am getting a little more energy without the chronic aching. (10/18/2007)
May I suggest that you ask your doctor to also test you for diabetes? Untreated/uncontrolled diabetes can make one feel so tired one just wants to die! Also, Google: Low GI Diet and Eating for Energy, and see what comes up. (10/18/2007)
I cratered when I was 28 (am now 56) and was diagnosed with MS, Lymes, CFS, Fibro, and what else?! Am a single mom of 4 kids (each pregnancy I got better) but exhaustion and pain plan my day. I guess now I'm realizing that there is no grade for every day--I don't have to be perfect. I love Flylady.com as it helps me to schedule chasing my house. Good luck--I can't believe that half my life I have been limited!!! We can thrive; not just survive! (10/19/2007)
Have you tried going to a good licensed nutritionist? When I went to one for constant fatigue and digestive problems, she recommended, among other things, L-glutamine, an amino acid that muscle-builders use to build muscles. It's available at vitamin stores, has no side effects that I know of, and really helps with fatigue.
She recommended taking 4 500-mg. tablets twice a day. It doesn't give women big muscles. Google it for more information.
I also take ginseng and phosphatidylserine every day for endurance and mental alertness. (10/20/2007)
I will make an appointment with a nutritionist. Sounds like a great start! Thank you (10/24/2007)