Curious as to how many here have been diagnosed with CFS due to a positive Epstein Barr issue in blood work in addition to CFS symptoms. Also if anyone has any input if mental illness and CFS can coexist . CFS diagnosis often saying all other conditions must be ruled out to have an accurate diagnosis... if one has mental/emotional issues that may cause similar symptoms can one truly suffer from CFS.
Mental Illness can make a person feel chronically fatigued.
But, Chronic Fatigue Syndrome is an entirely different illness altogether. That's why to make clear distinction between CF, and CFS, experts in the field as well as patients wants the name, CFS, changed to ME/CFS.
Just thought I'd add to PlateletGal's suggestion for the wonderful link.
Thanks for the information. That website is very informative. I was diagnosed as bipolar years ago but it never really effected me physically, even when very depressed. Then in 2007 I got very ill.... was tested for mono and it came back negative. I was sick for a good month. After that I never really was the same, it felt like I would start 'catching' whatever it was before... might last a day.. or a week. Working became difficult, I began hurting so badly that my already strong issues with insomnia were made worse. It would come and go. I found I couldn't tolerate stressful situations like I used to, that my 'mental' issues became worse and my feeling ill all the time was leading to more depression. Dr did blood work and tells me I have/had epstein barr and that could be causing my symptoms. It's been very difficult to accept my limitations and changes I have had to make to accommodate these new issues. However, I know that mental illnesses symptoms can be the same as the symptoms she is telling me is 'CFS'. From reading the info from the link... I do have many of the symptoms but certainly not to the degree that most of them say that cause all the neurological issues.
My opinion has been that "CFS" was just a name they had to come up with because they couldn't explain the symptoms that were occurring and the 'definition' being more a lack of proven illnesses.. I have been quite confused and torn as to what I think about this "diagnosis".
I continue to live with these symptoms being told by one dr it's one thing and my psychiatrist telling me it's being depressed. It's very frustrating. All I know is I feel like **** and I want it fixed and want to know what the cause is. It was not something that developed over time, it was sudden.. right after me being ill. It's just like I never got better and am powerless to fix it.
Thank you two for the information. Not sure I can do anything with it. Stuck with drs that are unfamiliar and contradict each other because of my mental/mood issues.
I knew I had CFS but getting a doctor to believe me was hard. Finally, my pulmonologist did the blood work for the Epstein Barr Virus and based on that and my symptoms, my primary does believe I have CFS. She doesn't offer any solutions but at least she believes me. I can trace it all back to almost 5 years ago when I was deathly ill with flu-like symptoms. Worse I have ever been. I have not been the same health-wise since. Lots of issues/problems/symptoms....I do believe EBV is the cause of most, if not all of my problems.
I think after a long message (my first contribution on this or any site) just went away. Grrrr.
If not, let me add, since I just sent my last message accidentally to who-knows-where, that the main part of making a commitment to helping yourself is to adjust your daily life to fit what you really can do without the expected 'pay-back' that comes with Fibro over exertion, make your best effort to let anyone you live with know what you have, what it has done to your body and sense of self, what you're gonna do about getting better, that you want them to learn about this condition, that Fibro carries NO shame for you or them, that it will not interfere with your love, affection and wilingness to be who they always knew you as, but that some things WILL BE DIFFERENT. Period. And you did not do this on purpose, you did not ask for it, you will not lay down and simply take it.
I can't say it enough. You really have to tell Fibro that you know it's there but you are going to take charge. IF you do have it, you will have some version of it all your life. That's why I spend so much time urging you to take a stand. I've had this for 13 years now. I understand the stage you're in.
Lastly, I know I am responding to your October 09 message way down the road. I read your plea and couldn't let it go by. You are most welcome to add me and communicate with me anytime. Support is top priority. ---You for yourself, first. A fabulous doctor or better team of doctors. And, family and friends who "Get it".
Expect to have a need to unload your emotions. Like I said in the first part of my message (I hope you got), chronic pain is no picnic. But it can at least be dealt with. You are your best hope to get through this successfully and with a bit of grace.
With best wishes, (and I'll try to see where in the net world my earlier message went. If you didn't receive it, try to let me know and I'll retype my ideas.)
Kit, I can’t believe this is the 3rd attempt of sending the 1st part of my message to you.
First and foremost, I'm not a doctor, but I've had Fibro for 13 yrs. Keep in mind, your symptoms are common to many possible diagnosis. And this forum isn't conducive to offering an informed diagnosis. But if you want to pursue a fibromyalgia diagnosis to rule it in or out, I have this to suggest:
Get yourself hooked up with a Board Certified Rheumatologist who treats fibro. They are the doctors who are relegated to expertly diagnose and treat fibro. It's important the doctor you chose: 1) is knowledgeable in Fibro. He/she must be a student of this condition as there are new ideas coming all the time. Even some Rheumatologist don't take Fibro seriously. They will take your money though. (and make no mistake, it is your money. You or your spouse paid the premiums or an employer paid them as a part of a compensation package. Your premiums insured that if something happened the money would be there. So, it is your money) 2) find a doctor who will do the various tests that determine what is the cause of your symptoms. It's a clinical diagnosis. There is no biological marker for fibro like other diseases, e.g. like a urine test for diabetes. Besides, you may have one or more comorbid conditions (conditions occurring at the same time) like Arthritis, Sjogrens, Irritable Bowel-constipation, GERD, Migraine, Hormone irregularities, Depression, etc. 3) You want a doc who is interested in you. May sound funny but there are those who parade fibro patients through, throw some meds and a brochure at them because the doctor doesn't know enough or they've become desensitized to your situation. Often women experience this because they may have kept in their emotions outside the doctor office and let it out when there. Of course, you're upset. Your life is completely different, and you're in pain. You want someone who is interested in seeing you progress and who'll keep you up-to-date. 4) A doc who provides you more than drugs as a solution and who will provide you the follow-up for all relevant treatment ideas, e.g.: paperwork for short term leave if it applies. 5) You deserve a doctor who at least attempts to offer some compassion for your situation. I know there are always going to be others who are worse off, don't let that stop you from expecting your doctor to understand how crappy things are and that you need help. Everyone I know has experienced the doctor who kept his/her contempt for Fibro suffers thinly veiled. They believe women are hysterical, looking for attention, hypochondriacs (why else would they have so many symptoms) or complain beyond their true suffering. I even experienced a bias against me as a career-minded person, dressed in a suit, plain spoken, non-emotional and composed; I was accused of asking for help for "annoyances" that interfered with my work ambitions. WOW! You could've pushed me over with a feather. I just about lost my composure then. I suppose then I would've quickly slipped into the other category of undesirable patient, the one who is hysterical. I simply got my stuff and quietly walked out to find a doctor who would be a partner in my pursuit of wellness. (I guess it still sticks in my ____ since I felt compelled to tell the story.) 6) You deserve a doctor who will discuss, breakdown the how & why and offer with conviction appropriate treatments. Some docs don't want patients who know too much. Some won't share potential side effects for fear the patient will imagine they have them. I strongly urge you to come home and look on reputable websites for information on drugs, not the manufacturer's site if possible. WebMD comes to mind. It is important to know ahead of time about side effects. That'll prevent you from believing some new thing is normal for the condition or freaking a bit when something new comes up. Knowledge is power. And, let's be up front. Would someone with way too many symptoms to begin with look for additional problems on purpose? Really?
There are several treatment avenues you might expect:
Drugs: to help with pain, inflammation, maybe a muscle relaxer, something to treat depression, anxiety, etc. You may have off-label drugs thrown at you like ones for epilepsy, or other brain oriented disorders. I tended to not take those. Fibro affects ones mental capabilities to begin with. And, without some proof of efficacy, I'm personally not interested in grasping at straws by putting what I considered poison in my body without concrete belief there was an off-setting benefit. That's me.
MUST expect (or if not offered, demand) non-drug treatments: Your body is involved. There are things besides drugs that can help your body. Physical therapy. You'll need a physical therapist who has studied the fibromyalgia protocol. PT can keep your muscles from staying too tight and maintain some strength and vitality (very important). Also, massage, heat (heating pad for bad points) - damp heat is best (steam room, spa or shower), gentle swimming, walking, yoga, meditation. Believe me; you must incorporate some or all of these in your life daily from now on. Period. I caution you to have a physical therapist who is familiar with your situation. Many only know the no pain/no gain theory. If that occurs, you'll be the one to pay. Too much or the wrong kind of exertion is going to exacerbate fibro symptoms.
You already know your condition does a number on your head. It's been shown that seeing a psychologist or psychiatrist for Cognitive Behavioral Therapy (CBT) is the way to help those with chronic pain, esp. fibro. I'm not suggesting you have a mental psychosis. CBT provides the mental support that makes all the other therapies work better. And, even if you already have a relationship with a therapist, I strongly urge you to more wisely spend that time & money in Cognitive Behavioral Therapy if your current therapist doesn't practice CBT -and well. (Just as for any doctor, referrals are best)
You have to have a zest for good nutrition, including water and fiber. You know how you should be eating; an already taxed body shouldn't have to operate starved. Add in supplements: a good multi vitamin, a B-vit complex, Omega-3, one designed for betterment of hair and nails, others swear by Guaifenesin, Evening Primrose, and, if it applies, Citracel and magnesium for constipation. Try to keep your weight within guidelines, no smoking and drinking which generally adds to fatigue (and may not mix with medicine). You're in a war with a disease looking to knock you down. Do all you can to incorporate all the ammunition in the arsenal you can.
Your sleep is, of course, affected by the pain, weird fatigue, etc. So, your sleep hygiene is critical for productive sleep. You already know the drill; just make it your routine. Don't drink anything like caffeine after 3-6 pm that can keep you agitated. Alcohol doesn't help with restful sleep. In fact, it could contribute to snoring and poor REM sleep. Don't eat or exercise close to bedtime. Try to maintain a regular bedtime in a room designed for sleep: nice temperature, good mattress, clean sheets, darkness, NO TV or music. This routine may take some getting used to but after the first month of sticking to it, it will seem natural. It will help you every day for the many years to come. I personally don't take nor recommend any sleep prescriptions, like Ambien. Despite what you've been told, they do have undesirable, difficult complications which I have witnessed. In fact, the doctors, this week on The Doctors TV show claimed that sleep medications only add approximately 25 additional minutes to ones' sleep! I feel there's not enough trade off. Depending on your family life, you may have to enlist the help of the rest of your household for this to happen.
Here's the last part of the first half of my message to you. (or #2) If u look @ how they're listed, they're in order of #3, #1 and then #2. So, sorry. I'm a double rookie on Medhelp & this laptop.
Cont'd from above...
Another thing you must do for yourself is exercise. I know that when you hurt that seems counter intuitive. But if you become bedridden, you will stay bedridden for longer and longer. Gentle exercise like swimming or walking is crucial for maintaining strength, circulation and movement. There will be times you'll have to force yourself to get out of bed. Heck, there sometimes are several consecutive days I don't what it takes just to shower. But I'm here to tell you staying in bed causes more stiffness and pain.
As for what is known as Fibrofog, referring to the dampened mental capacity one has, I recommend keeping the noggin working too. My mental fog shows up as delayed success in searching for names and words I would normally know well. Spelling is ofttimes tough. It is when I am quite fatigued or the disease is especially flaring that it's the worst. I encourage mental puzzles, reading and writing, stimulating discussions with critical thinking, too. I've had a doctor explain fibro as an energy depletion of the each living cell, because the body is demanding energy be spent, even when not needed-(that probably explains the tight, sore muscles-even could account for our sensitivity if nerves are working double time. Perhaps because the muscles are always a working and never relax which in turn causes the pain and trigger points, our nerves are sensitized too. There are many theories.) The two areas we use a lot, and would most notice not working well are our muscles and our brains. (The fatigue we feel is not only from muscle fatigue but every system is erroneously called upon to be at the ready instead of resting, resulting in the depleted feeling we have.) It would stand to reason the brain needs exercise to keep healthy like our muscles. Even without Fibro, studies have shown that not using ones brains results in a lowered mental capacity. The ole use it or lose it concept. Please add this into your routine. Be mindful, even here one must pace oneself.
I mentioned bedroom activities...let me add... (I spoke about family in my 2nd edition which I already sent you. I failed to mention that your spouse may need to forego your help in other things to reserve the energy required for sex. I mean it!! Having a close, loving relationship - which took us eight long years after diagnosis to get there - is one of the biggest assets in fighting fibro. Sex can, and probably should, be a part of that.)
Give yourself permission and opportunity to enjoy life. Plan, plan, plan. Pace, pace, pace. Anything to take stress out of your life. Keep seeing friends. It's okay to explain what you have, even offer a website you like for them to visit as a means of understanding what you're going through. You shouldn't make your time with others only a time to complain. You aren't your disease. You don't want to present yourself to others in a way that makes it appear that all there is to you is your disease. Plan time out, plan to laugh, plan to have fun; even if your time is abbreviated in some way to accommodate your condition. Now, I'm not saying you can't or shouldn't be straight with others about how you're feeling or how crummy things are. You just should be strategic about who you pick and when/how you share info. Your loved ones and friends can stand the truth and want the opportunity to support you. Just don't be Debbie Downer. It wears thin. We want understanding when, in fact, our closest family/friends or caretakers need some of that too. It's stressful having someone around who is disabled, whether a little bit or acutely. It wasn't what they planned on either.
Of course, what do you do about work? Well, my case of Fibro struck after a violent whiplash from an auto accident. I had just changed employers for a totally commission-paid job. Oh, Brother! I didn't have a primary doc who even believed I needed an MRI for my neck since I was so put together and didn't complain bitterly about the debilitating neck pain. Sorry, just my nature, and, my eventual downfall. It took a long time to get diagnosed with one herniated and one ruptured cervical disk. Some years later came the ensuing diagnosis of fibromyalgia. Fibromy-what?! Longer still for me to have any real concept of what it meant for my future. I wasn't accustomed to letting anything hold me back. It's a real struggle deciding how to handle the work thing. Who do you tell, do you tell at all? What does that mean? How can I make sure I don't lose my work ethic reputation and feel like I let my employer, my fellow employees and my clients down, not to mention my family for whom I'm working anyway. I had 3 children to put through college yet.
Very few have heard of Fibro, until recent commercials and fewer still know what it is. I didn't know what it was. It's invisible. Believe it or not, that's the real rub. There's absolutely nothing to show for it. Awful to say, but it would be easier to explain how disabled one is if there was a cast or a wheel chair, right? I don't mean to be ugly saying that, just making a point. Any-who, all to say the work strategy is a whole other essay.
The truth of the matter is you may have to quit working. My sister also has Fibro, (Yes, there is a genetic component) Both she and I were forced by our symptoms to quit work, me 19 years early and her two. As she puts it, her new job is doing all the things that control her condition as much as possible so she at least has some quality of life and can spend time with family and friends, which to her means more than show up but truly participate.
Kit, I hope you come back to Medhelp and feel like reading my two part message I wrote for you. I'd like to know how you are, what you found out and offer to exchange info anytime. I wish you well,
That appears to be one of the most difficult diagnosing concerns with Fibro, cross-over of symptoms. Frankly, who knows what triggers what. #1 F is thought to be triggered by a stressful event of significant proportions: either physical (like E-B) or emotional (death in family). My young daughter has antibodies indicating exposure to E-B. Then we had a huge family tragedy. Then she got CFS/F. CFS/F runs in my family. After she got hit pretty hard with CFS/F she exhibited symptoms of bi-polar, even treated for it. Two years later, she's not dealing with any of those extreme symptoms and her docs now take back the B-P diagnosis. In between she under went 3 1/2 months in-patient treatment for 'mental probs.' Let me just say she asked for the treatment, a willing participant anxious to discover a new way to live life and think. She came out, like I said, on the other side her old self. She was always a bit strong willed, energetic, a perfectionist, deep thinker & subject to the will of hormones. I gotta say, again, no lable, no treatment, no concern that she is B-P. Don't know where that leaves your question, but I guess it might be a chicken and egg thing. I've read where 'type-A', perfectionist, high-achiever, 6 irons-in-the-fire at one time personalities are common in CFRS/F sufferers. As Arsenio Hall used to say, "Hmmmm".
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