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Does anyone have this ? How long have you had it and how do you manage your symptoms ? I've been sick since October and have been having test after test to rule things out and it's looking like Chronic Fatigue. I haven't been exercising - just getting through the day. Not being able to exercise and feeling so useless is making my depression worse.
I have fibromyalgia, which many doctors (mine all do) consider essentially the same disorder. For some doctor's, if pain is the primary issue, it's labeled fibro, and if fatigue is the primary issue it's labeled chronic fatigue. Or for some doctor's it's fibro if pain is present at all, even if fatigue is the primary issue.
For me, I was used to working with pain. I had a desk job, so pain might make me crabby, but didn't prevent me from doing my job. It was the worsening fatigue that kept me from working (in my first couple years after diagnosis, it was almost like narcolepsy. I'd fall asleep in the weirdest situations, and couldn't stay awake. I was literally sleeping 16 to 20 hours and still not feeling rested).
I ended up on disability, but I think if I'd had early treatment, I might have been able to continue working. In hindsight, I started having symptoms 10 years or more before they became debilitating.
I was diagnosed about six or seven years ago, and only in the last year, have I had my symptoms under fair control.
My first suggestion is to get a sleep study if at all possible - with an EEG, to see if you're entering restful stages of sleep (I wasn't). There are no meds designed specifically to increase restorative sleep, but there are medications that have the side effect of increasing the amount of deeper, more restful sleep.
For me, it's been the key to reducing and managing fatigue. I take a medication called Provigil occasionally. Many people with CFIDS take it or a similar med as a daily medication. My neurologist wants me to only take it occasionally, because some people do seem to develop a tolerance to the med over time (and some do not). If I were still working, he said he'd probably have me on it during the week and off on weekends, but since I'm on disability, he wants to be more cautious.
I'd also suggest a fibromyalgia and/or chronic fatigue support group. There is so much overlap between the disorders that you'll learn as much from one group as the other - so whichever is available in your area you'll be welcome. You'll find that at least half of the group members have symptoms of both CFIDS and FMS. Coping strategues and new treatment/medication options are usually discussed, and sometimes support groups get wind of research before the doctor's do, so often CFIDS and FMS patients find themselves in the position of having to educate their doctors.
It's a rollercoaster ride, for sure, but try not to get discouraged. Your first job has to be taking care of yourself (and it's hard with fms and cfids - because it's not always obvious how best to do that).
Symptoms can be managed, and you'll find that you will have more and more control over them as you find your treatment tools. They can be different for everyone, which is why the support group can be so helpful - exposure to more medications and treatments that others have found helpful.
I am from the Wisconsin Rapids area, and must tell you that I am having trouble finding a good doctor that listens to me. I have been seen by a few doctors, some tell me it is depression but mentally I am good, just exhausted and tired and have pain in joints. I have been told by two ER doctors that it is CFS- I am trying to find a doctor that understands the condition. Do you have any suggestions at all for a good doctor that listens and can help me with CFS or Fibro???]
Thanks for your help.
Also-Have you ever experienced Dizzyness or nausea?
Yes, I do sometimes experience dizziness and nausea. Sometimes there's an obvious cause (I also have chronic sinusitis and a sinus headache will be a tip-off), and other times it'll be without warning. On flare days, it's not uncommon for me to feel light headed and have poor balance. Sometimes it even effects my ability to speak clearly. I'll even slur words, in extreme flares - when this would happen when I was still working, I'm sure some of my coworkers thought I was drunk or was on illegal substances (kind of funny if you know my alcohol and drug history - which is essentially no history. I rarely even have a single drink, because even a single alcoholic beverage makes me too sleepy for it to be any fun).
The symptoms that can occur with fibro and chronic fatigue and the treatments overlap a lot (which is one of the reasons doctor's tend to think of them as the same condition). Even though we're not depressed, antidepressant meds can help (because depression and CFIDS/FMS are all neurotransmitter disorders, and antidepressants work by increasing the production or function of neurotransmitters). Usually the dosage is quite different though. Depending on the severity of the CFIDS/FMS and also the particular antidepressant being used, the typical dosage for a person with CFIDS/FMS may be either much larger or much smaller than the typical dosage for depression. I'm not sure whether doctors have figured out why that is, it just is.
I'm not familiar with Wisconsin Rapids doctors, but I'd recommend calling your local hospital and asking to speak to the community outreach/resources department or the rheumatology department (someone should know where the closest fibro and/or chronic fatigue support group meets).
The support groups are awesome for learning about the local doctors. You may meet some of the doctors at the meetings (many groups have local doctors as recurrent guest speakers). You'll also be able to chat with other people and ask about good doctors - and also doctors to avoid. Word travels fast in the groups as to which doctors are knowledgeable, caring and sympathetic, and which aren't.
I know it's not always possible, whether you self pay or have awesome medical insurance to get appointments with specialists (you may need a referral....), but if it's possible for you to get an appointment for sleep study WITH an EEG (not just testing for apnea, but also testing your brain wave patterns during sleep), I'd highly recommend it.
Any hospital that has a sleep study lab equipped to run the complete testing should have doctors familiar with chronic fatigue and fibromyalgia.
Rheumatologists and sometimes neurologists are usually the experts, but it really varies from community to community.
Hopefully you can get a referral to a specialist without too much trouble, because the specialists really are key here. You need a general practioner who is willing to work with specialists, but it isn't uncommon at all for your "regular doctor" to be very unfamiliar with chronic fatigue and fibromyalgia (or they may be educated in the drugs that can be effective treatment, but they may not know why they work - for example some doctors will tell you that chronic fatigue and fibro must be caused by depression , because antidepressants reduce symptoms. Which is a bit like saying that because Midol relieved my husband's headache, he must have had PMS).
My balance is off - it's embarrassing at times. When I do use the treadmill I have to constantly touch the rails. I'm so discouraged because I haven't been able to really do it for months now. I used to do 45 minutes a day. Now all I want to do is sleep.
I have never been diagnosed with CFS but I am Bipolar. I know that right now you're probably thinking that one has nothing to do with the other. The other thing I want you to know is the I am NOT anti-medication. I take Lamictal and Wellbutrin and right now, would not even consider stopping since I feel better than I ever have in my life.
Now, I'll tell you the reason I am writing here. I used to feel the same tiredness. Like kaplods I also took Provigil on an almost daily basis. Afternoons were particularly hard. Sometimes I would fall asleep after the kids got home from school (about 2:30) and would sleep for 2 or 3 hours and there was no waking me up.
About a month ago, 2 of my sons and I (they are 12 and 14) started seeing a doctor who works with nutrition and doesn't believe in drugs (although he understands me meds and doesn't try to get me to stop taking them). We started because my 12 year old had digestive problems. He would have a BM every 3 or 4 days. I started because his philosophy is that if I am not on this I won't cook this way and the kids won't eat this way and he is right. I also needed to lose weight and so did my 12 year old. 2 weeks ago, he told us to stop all grains and dairy products. It sounded impossible, but we found out that once you get used to it, it's pretty easy. Anyway, me son now and a BM every day and sometimes twice a day and he has lost 10 lbs. I have lost 5 and feel SO much better. I don't have that fatigue anymore.
I'm sorry that this is so long, but I wanted to tell you my story. I am not saying that this could be the "miracle fix" for you since I hate people that do that. I always get told about all the "miracle fixes" for bipolar and it irritates me to death. I don't even like the way I sound right now, but I do understand what it feels like to feel lousy over something you can't control. I just wanted you to think about the fact that maybe this is somehow food related. I have started reading a lot about nutrition and see how much food allergies affect us. Maybe this could be of use to someone and maybe not. I know it is working for us. I wish you the best of luck.
Years ago I became very ill and went to several different doctors and was told I had CFS by more than one doctor, was told I was suffering from Fibro from other doctors, then I researched like crazy and all my symptoms fit lyme disease. So I asked doctors to test me for lyme (the first tests came back negative, found out the labs my blood was sent to didn't use human blood but another type, hence the negative results). I never saw a tick, didn't have the bull's eye rash, etc.
After going to more doctors, one doctor sent my blood to a lab called IgeneX in CA and sure enough I tested CDC positive for lyme and a coinfection. I have been totally better now for over 4 years (when I was ill I gained the weight). I used alternative medicine as antibiotics didn't help me.
I believe CFS, Fibro and other names are symptoms of an underlying cause for other diseases, in my case, it was chronic lyme.
It's great to be well again and also losing the weight I gained when I was sick. Thought I would share my story.
Chronic fatigue syndrome is a disorder that causes extreme fatigue. This fatigue is not the kind of tired feeling that goes away after you rest. Instead, it lasts a long time and limits your ability to do ordinary daily activities.Symptoms of CFS include fatigue for 6 months or more and experiencing other problems such as muscle pain, memory problems, headaches, pain in multiple joints, sleep problems, sore throat and tender lymph nodes. Since other illnesses can cause similar symptoms, is hard to diagnose.
I believe CFS, Fibro and other names are symptoms of an underlying cause for other diseases, in my case, it was chronic lyme.
If a doctor diagnoses you with fibro or cfids without running any tests - get a different doctor.
If your doctor suspects Chronic Fatigue or Fibromyalga, he (or she) isn't much of a doctor if diagnostic tests haven't been run first to check for everything else it could be - and Lyme disease is very high on the list. In my experience (in the Midwest, with lots and lots of deer ticks), most doctors check for Lyme disease at least twice (at least 8 months apart) before deciding you don't have Lyme disease. Before a diagnosis, all sorts of diagnostic tests are run looking for osteo and rheumatoid arthritis, multiple sclerosis, narcolepsy, autoimmune disease, sleep disorders.... both tests that rule out fibro/cfids or support the diagnosis.
It's important to realize that Fibro and cfids are not diseases, they are syndromes - a cluster of related symptoms. The doctors realize there may be one cause for both (or each) syndrome or there may be many.
If we had not discovered viruses for example, flu symptoms might be considered a syndrome rather than a group of diseases. Some peopel would believe that all flu had the same cause, others might suspect there were multiple causes.
Some doctors suspect that there is a single disease process behind both fibro and cfids and others believe there are multiple causes for both. Very few doctors still believe there is a single cause. Most believe there are many causal or contributory factors involved. It's possible that as the syndromes are better understood, that new diseases will be diagnosed as a result (and more tests added to the battery to eliminate those diseases before considering fibro/cfids).
Fibro and cfids are exclusionary diagnoses. This does NOT mean that if they find nothing wrong with you they lable you with fibro and cfids. Rather it means that if you have a cluser of symptoms and after they've eliminated all of the known disorders with those possible symptoms, they're left with cfids and/or fibro (depending whether your symptoms fit one syndrome better than the other).
When you're dealing with symptoms of untraceable origin, you treat the symptoms (one by one if necessary). I'm confident that they will be able to further pinpoint the causes eventually. Maybe they'll find new diseases, maybe they'll find the underlying issue(s) to make diagnosis more precise.
From my experience, the problem with getting properly diagnosed with lyme disease are the labs. My blood was constantly being sent to labs such as Quest or Labcorp who do not give accurate tests.
When Quest, Labcorp, etc. make there lyme probes they used rabbit antigens from 2 strains of Lyme.
IgeneX uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme.
Also, when a Western Blot is done there is an acidic gel that is used to separate out the bands. Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands.
So I think so many people get misdiagnosed. Lyme is treatable, the other syndromes are just that, syndromes of an underlying cause from a real disease.
I wish I had known this when I first showed symptoms of being fatigued, having joint pain, etc. But I learned and finally got tested by the right lab. It's sad that there aren't more accurate labs that test the way IgeneX tests.
And yes, Lyme has become an epidemic not only in the U.S. but worldwide and people not only get infected from ticks but from any blood sucking vector that feeds on the real "host" which is the white-footed mouse. I know people who became infected from black flies, mosquitoes, fleas, etc.
I've been screened for Lyme and rheumatoid and a variety of other things. The Lyme I agree is VERY hard to diagnose because the tests are not adequate. My results came out borderline so they would not submit it to IgeneX. Maybe I should try again because I do hear horror stories about people who have had Lyme undiagnosed for years. I live in the northeast - near the marsh and we have a HORRIBLE tick problem here. I never found one on me or had the "rash" but I know it's possible to have lyme without the rash. I'm kind of "doctored out" at this point and am taking a break. My primary care was on maternity leave until last month so I may call and make an appointment to see her. She actually listens to me where others in the practice who don't know me just want to treat the most prominent symptom. Wish my insurance covered holistic docs.
I appreciate everyones input.
I'm exhausted. I can sleep for hours now where before I had CHRONIC insomnia - I mean for YEARS. I still wake up and stumble to the bathroom to pee but I fall right back asleep again - something I always had trouble doing - and sleep like I'm in a coma. Also having the balance problem, bloating, joint aches that move around, headaches etc. I take so damn many meds now that I'm trying to wean myself off of.
mom with issues - thank you for the diet suggestion. I've never had issues with food except that sugar now makes me ill - a good thing. I rarely touch dairy but will investigate that approach more closely as it is something I can do on my own - excluding things for a period of time and seeing if it changes how I'm feeling.
It's not uncommon (at least here in the midwest) for folks with the symptoms of Chronic Fatigue or fibromyalgia to be treated with a course of the appropriate antibiotics for Lyme disease even if the tests come back negative.
At the time I was being diagnosed, I also had autoimmune disease attacking my joints sinuses and lungs (and possibly other connective tissue). I had been getting sinus and lung infections at least twice a year for several years. My antibiotic history (the specific antibiotics I was on for the pneumonia, bronchitis, and sinus) ruled out untreated Lyme disease as a cause of my symptoms.
A rheumatologist who spoke at our Chronic Fatigue and Fibromyalgia support group told us that she begins the Lyme disease antibiotic protocol immediately (even before the lyme disease test results come back) for patients with any symptom that could be a result of lyme disease. If symptoms don't improve, she gives a second course of antibiotics and runs a second lyme disease test, and if there's no improvement and both test results come back negative, she feels confident that she's ruled out lyme disease as a cause.
I don't know whether this is a standard protocol, but she did say it was fairly common in the midwest. It wasn't too different from what my own doctors did in Illinois (they didn't prescribe the courses of antibiotics only because I had already had two courses of antibiotics in the 8 months prior to my testing. I had two more courses for sinus/bronchitis infections in the following year as well).
At the time my Lyme test came back negative I specifically asked if I could have an antibiotic "just in case" and was told that it wasn't done. I do NOT take antibiotics unless it's a major infection that I can't clear. I was on them a lot up until my mid 20's and have been very careful NOT to use them as I was concerned that if I did have a need for one - it wouldn't work. So the issue of me being on an antibiotic had nothing to do with overuse. I was told that they just didn't do that.
Chronic Fatigue Syndrome
