# Can anybody help?



## lizzie (Sep 18, 2004)

I am not sure that anyone can help with my question, but here goes......For months I have suffered with a long list of symptoms. This list includes,but is not limited to: severe joint pain, muscle weakness, extreme fatigue, spots on my shoulders, back, neck and chest that feel bruised but are not, weight gain, headaches, muscle spasms, constipation, occasional warm tingling sensation in my hands, hair loss, periods of time that my eyes are so dry that things seem out of focus, and what I call brain fog. My youngest child is 22 mo. old. I never completely recovered after he was born and had many symptoms. Seven months ago I had a severe respritory infection and since then I have developed additional symptoms and they have all progressively gotten worse. I finally went to the doctor last week. He took blood to run several test including: Lupus, Arthritis, Thyroid, blood count and Epstein Barr. After my visit, I read an article about Fibromyalgia that sounded just like my symptoms. The nurse called yesterday and said that all of my test were normal except for the Epstein Barr. She said that it was a type of Mono, but not the same as the commonly known variety. She said that it was chronic, not contagious and would take 6 months to a year to recover from.I have done some internet research and have come up with very little info that matches what the nurse said. I have discovered that there is a link between Fibromyalgia and Chronic Fatigue Syndrome. There is also a link between Chronic Fatigue and Epstein Barr.I am scheduled to go back to the doctor in two weeks, but am looking for info now! I feel like my symptoms point to Fibromyalgia, but I have tested positive for EBV. I am not even sure what I am asking for. Does anyone know anything about Epstein Barr? Do my symptoms resemble Fibromyalgia? I would appreciate any help. I have two wonderful sons that deserve so much more than I am capable of giving them right now. Thanks, Lizzie


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## moldie (Sep 25, 1999)

Welcome Lizzie. All that I can say is that it does sound like classic fibro symptoms. I feel for you being so young and trying to keep up with two lively boys. I have two boys too, but I am in my fortys now, and they are grown- 19 and 21. How old is your oldest? I went to the doctor when I was a young mother complaining of fatigue, but the doc said "That's because you have two small children and are working." I worked "full-time/part-time P.M.s as an LPN. I was the the primary house-cleaner too, as well as the primary-care giver of my children. If I had to do it over, I think I would have pushed my husband to do more to help. He probably would have, (begrudgenly), but I didn't ask. He really is a good guy though if given the chance! I was used to seeing my Mom work hard, being a mother of 5, and my Dad, a hard working farmer, didn't do much around the house. My husband grew up the same way. Trouble was, this wasn't the farm life, we were living, it was the city. I was working another job, and he wasn't up at 5am and and got home by 5pm, not by 9pm, like a farmers life. I'm not blaming him for getting fibro, but he could have made it easier if I would have asked him. So don't be stupid like I was and ask for help when you need it, wherever you can find it! Both our families lived 2hrs. away. Needless to say, we didn't get out much when our kids were young either.I didn't start getting the aches and pains until I was in my late 30's. My hands and feet always ached and were stiff in the morning when I awakened, so my Mom had to tell me (a nurse) over the phone, "Go see a doctor-it could be rheumatoid arthritis." Fortunately the Rheumy in my home town knew about fibro and diagnosed me after testing out other possibilities, no response to ibuprofen type meds, and checking for tender points. I know about those spots that feel bruised, because that's how I would describe them when you touch them with the slightest pressure. I knew nothing about fibro back then, so never had checked those trigger point tenderpoints before. EBV is common for CFS. I don't believe I was tested for that one, but perhaps after that many years it wouldn't show up. (Not sure about that though). For many people with fibro, I would guess it starts out with fatigue which may be due to CFS/EBV, and goes into fibro. I would imagine some are hit by the fatigue more and pursue it more agressively, and some doctors would actually test for it, but many people may start out with a milder form and don't get diagnosed/tested at that point. As far as all being different things, I don't know, and don't even think they know yet for sure. There are so many over-lapping symptoms that they generally associate them together on some web sites/organizations.I find that exercise right away with range of motion: in bed, sitting at the edge of bed, and then finely standing; is most helpful. I start out the day with a glass of filtered H2O to rehydrate. Then getting into a warm tub to warm up the muscles is good. If too tired after this, I rest, and then get a good breakfast. After this, you can go into further stretches, calestenics, and isometrics. Then a mod. amt. of low impact aerobics is good, followed by more rest. Sounds virtually impossible for a young mother, doesn't it? Perhaps you can get them involved with you in this routine. Your rest periods can be quiet reading with them. When/if they nap, you nap too. Then let them help you clean the house. So it won't be spotless. Maybe your husband/or helper could touch it up later and could also help with the kids/dinner. Tell your family it's a team effort, not the Queen slave that does everything for everybody else! When you get the fibro-fog, ask your husband, if you have one, or perhaps someone else available you can call on, if they will allow you to lie down for at least 10 minutes-to an hour, in a dark quiet room so that you can restore yourself (and maybe you'll do the same for him/them sometime!) When the kids are in bed, or you can find someone to sit while you steal away; maybe you could get a nice massage! I found warm moist heat (I use a microwave "Bed Buddy"), and then some trigger-point pressure therapy (I use the "Thera-cane" to do it myself) and massage are great for those over-stressed/tense muscles.I hope you found some of this helpful to cope with what you are going through now Lizzie. I know I made it sound so easy to get time to do this, and I know it's not. I also know that you are worth that time, and you need it to be an effective mother/partner/friend. Good luck to you!P.S. I forgot to add that getting enough sound sleep is essential, but often difficult for people with fibro. Typically we can get to sleep for a few hrs., then wake up, unable to get back to sleep. I take Benadryl (or an OTC equivalent) to help me sleep at night, and it works rather well. If it doesn't for you, then I would suggest getting a prescription of a med suggested specifically for fibro people for sleep from your doctor. I'm sure more advice and support from others is on the way! [This message has been edited by moldie (edited 06-16-2000).][This message has been edited by moldie (edited 06-16-2000).][This message has been edited by moldie (edited 06-16-2000).]


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## lizzie (Sep 18, 2004)

Moldie:Thank you so much!!! I could never express to you how much it means just to hear someone say that they understand. I am the type of person that never admits that there is anything I can't do if I put my mind to it! I have hosted the holiday dinners and birthday parties for years for both mine and my husbands families, planned my sisters wedding, helped with every school event, landscaped yards, etc,etc. Anything anyone needed I have always tried to be there. My oldest son is 10 years old. I have practiced baseball, soccer and basketball every season for years. I worked up until mid pregnancy with my youngest. I develped toximia(spelling?) and my son was delivered two and a half weeks early by c section. I have been home with my children since then. I don't think that I have felt right since my son was born. I blamed that on lack of sleep. I haven't slept well on my own in years, but our little one doesn't sleep through the night on a regular basis to this day. Both of my children were that way. My 22 mo. old goes to bed at 10:30 pm wakes a couple of times in the night and gets up between 4:30 am and 5 am. He usually takes one 30 minute nap during the day. His pediatrician says that some children just don't need much sleep. Anyway, last Nov. when I got sick, I developed more symptoms and they just get worse and worse. I am sorry for rambling. There is just no one in my family I can talk to about this. I guess what I was trying to say is that I have always been the one who could be counted on and rarely got sick with anything more than a sinus infection. Now, I have let this drag on for months for fear of going to the doctor. I now have a dignosis, though I am yet to know what it means and my family just doesn't seem to be taking me seriously. My mom has been terribly helpful. She has kept the youngest two nights this week so I could sleep, (or try to) but somehow she makes me feel guilty when I can't tell her that 2 nights of sleep has cured me. She still insist that a few good nights sleep is the answer to all my problems. My husband loves me and our children, but he is just not a nurturer and parenting has not come naturally to him. He has changed 4 diapers in 22 months and has stayed with the youngest alone once for me to run to the grocery store. I am not complaining about being with my children.....I adore them....they are my world. It is just hard sometimes to never be alone to gather your thoughts. At the end of the day I am far to exhausted to do anything but lay down and pray for sleep. I guess what I am saying is I feel guilty, guilty, guilty for not being the strong person I use to be. Even though my family smiles and says everything will be okay, I feel like they think I am just looking for attention or something.I apologize once again. I meant to type back a short message thanking you for the advice. Instead I have just poured out all my negativity. I am sorry. I do plan on trying to incorporate some of your suggestions into my daily routine. Lizzie


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## moldie (Sep 25, 1999)

Your welcome Lizzie. No need to apologize about rambling. I'm a bit of a rambler myself. As far as the guilt goes, I certainly can relate. I feel guilty too about not helping out like I used to. (I think I even did a post on it once here.) I do what I can. I do the weedeating, painting, staining, landscaping, gather the garbage up, wash the car etc.. I haven't worked outside the home since my infection five years ago after 20yrs on the job. I've always helped my husband out like that. (I understand about the diaper thing too. I started my kids with cloth diapers until they were both about 18mos. and then switched to the disposable. My husband would save the dirty diapers for me to wash out when I got home from my shift. He once dumped all the sheets in the utility sink for me to wash out and left my son on a bare mattress after he had thrown up. Fortunately he hadn't thrown up again before I got home!) He's a good carpenter though, so I think I'll keep him







. I think he understands now, if I push it and do too much, I'm good for doing squat for a couple of days. He's a nice man, but I don't think most guys are trained, wired, or domesticated enough (at least in my day) to be very helpful for housework and child care. I envy those women who have the husbands that take their children out for a walk or shopping with them. Mine always wanted to leave the room when they brought my baby's in at the hospital because it was too much trouble to "gown-up." He was great in the delivery room though, I'll give him that. Us whiny women, we just want it all, don't we?Now I even have more guilt from my sons telling me how lazy I am for not "working" now. I don't see anyone else lifting a finger to help around the house, and if I do ask them to do a job once a week they complain. My husband would turn around and do the job himself sometimes, which wasn't exactly teaching them responsibility. Sorry, I'm doing negative venting now. So, thanks for listening to me too Lizzie!


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## lizzie (Sep 18, 2004)

Hey Moldie! Feel free to vent to me anytime. I know this probably sounds strange, but since yesterday when I emailed you back....I have felt so much better! Like someone let a little air out of this ballon inside my head that was about to burst. I haven't been able to vent to anyone in a while. I have said what people wanted to hear and I wanted to believe for so long, it is like a completely new experience to admit to myself and others how I actually feel. Last night I lay awake in bed and tried to remember the last time I had really felt good. I couldn't remember when! I am beginning to think my problem has been going on longer than I realized. I read some other post yesterday. There was one about a pain in the breast that also ran into the shoulder. I have had that exact problem off and on for four years. I have also had bouts of joint pain, muscle weakness and fatigue for at least six years. The difference between then and now is that I use to always have periods of time in between that I felt much better. I had just told myself that the down times were the product of my own laziness and that I wasn't pushing myself hard enough. For the past 7 or 8 months though, I have continued to go from bad to worse. I now wonder if I had admitted that I had a problem earlier, would it have gotten this bad? Maybe, I could have prevented some of this pain. I don't understand why I had such a hard time just admitting that I was sick. I want my family to understand how I feel. I don't think my mom wants to admit that I actually have a problem because if she does, she feels compelled to fix it or take on more responsibility helping out. She can't fix it and I don't want her to take over my family. I just want her to understand, be a little symathetic and stop putting pressure on me to get well by tomorrow. I think that my husband doesn't want to accept it because it would make him feel guilty that he wasn't willing to take on any responsibility with the children, the house or the yard. I gave him some info off of the internet about Chronic Epstien Barr Disease. He read it looked up at me and said " Well, honey.....that is just a depressing prognosis for you. I don't know what you are going to do!" I just wanted to cry. Worst of all, I don't want my 10 year old to know that I have an on going problem. He was dignosed with Irritable Bowel Syndrome a couple of months ago. Stress seems to be the major factor in when he has problems with it.(I was dignosed with a nervious stomach at his age and it eventually went away...his dr. said his probably will to) We are extremely close and he is very protective of me. If he thought I had something that wouldn't ever go away, I am afraid that he would spend a lot of time worrying about it. The last thing I want to do is upset him. I am glad that my 22 mo. old is oblivious to the whole problem. He goes from a quarter til dawn to half past dusk stuck in overdrive and agologizes to nobody for it. He is exhausting, but it is a joy to share in his sheer delight with every second of everyday. I had forgotten that that kind of contentment actually existed. If your still with me...THANKS FOR LISTENING! Lizzie


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## weener (Aug 15, 2000)

Hi There Lizzie:Welcome. After reading your letter, it brought back some of the old feelings that I went through when I first became ill. It is one of the hardest things to accept. Especially when everything looks fine on the outside. I think if people can't visually see something wrong with you then they think that it's all in your head. But, we know different. Over the years I come to accept that the fact that I probably won't be able to do everything I once did. I sure will give it a try. Try to pace yourself and take time to rest. I know it will be hard to with a 22 month old baby and 10 year old. I will keep you in my prayers. Remember your feelings are real and we are here to support you.


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## lizzie (Sep 18, 2004)

Hi Weener: Thank you for your understanding! I love this site! I know that I have rambled on and on for the past couple of days. I am usually really a pretty up beat person.(at least until the last couple of months) I have many blessing in my life! I intend on doing what ever it takes to become as healthy as possible. I just lost sight of that for a little while. Thank you for your prayers! You are all in mine! Lizzie


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## Guest (Jun 22, 2000)

Hi Lizzie, I'm glad you are getting some great "vent time" in!!







Feels great doesn't it. I was diagnosed with fibromyalgia in 85 after my second child was born. The doctor, not the one that diagnosed me, said it was from carrying my son around. I was diagnosed in 92 with CFS. I remember all to well trying to take care of my 2 kids as a single mom.







I would have to call my day care and have her bring the kids to me in the car because I didn't have the energy to go in and get them. I would cry all the way home in sheer exhaustion. On the weekends my poor kids had to pretty much fend for themselves because I couldn't get out of bed. And, I was a total crab all the time. I was lucky enough to know a psychologist that had worked with a CFS clinic at the rehab center where I worked and got great counseling. This was after I could no longer work. I haven't been able to work since 94. I was tested for everything you have been, and the Epstein Barr Virus was also there. It is a "symptom" of CFS and not everyone with CFS has it. The non-restorative sleep is a major pain! Fibro and CFS share some common symptoms, I would encourage you to research them both and see where your symptoms fit the best and go from there. I documented symptoms for awhile before going to my MD with them. I think the total exhaustion and not being able to take my walks on my lunch hour were the first signs that bothered me. Exercise with CFS can be detrimental if you don't stay within your boundaries. Aerobics and that type is usually off limits. I do try to walk at least a couple times a week. Both for the physical, to keep loose muscles and for the mental! Anyway, Lizzie, welcome to the board it is always great to visit with people who understand. DeeDee


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## geomv (Aug 9, 1999)

I didn't have much pain this winter, maybe it because the CFS was so bad, or, maybe it was the B-12 shots. I hadn't thought about that.


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## Guest (Jun 23, 2000)

Hi Lizzie,I can relate to having to admit that you can't do this all alone. You need to pick your battles in order to survive. Pacing yourself is very important and trying to conserve your energy is important. I too have children with high energy levels and I must stop and explain to them what is going on..they are 6 and 10 so they can understand when I am not feeling great. i realize your son has IBS but maybe sharing some of your diagnosis with him will decrease his stress level to some degree.. I find educating kids helps them to deal with situations that are not positive. Not knowing can be a great source of stress.Well take care and I hope to chat with you again soon.. I am going to try to chat on monday night 9pm.sea


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