Not typical symptoms but could this maybe be CFS?

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lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 9/16/2012 2:22 PM (GMT -7)   
Well, here goes... I'm a 21-year-old female battling a mystery illness for over five months now, and even before that I was feeling a little off. Around the end of March I was having a lot of days where I didn't feel too great... I would get plenty of sleep, but then I'd be driving home from class and feel so tired I felt like I could faint! I remember one specific day, I had just eaten dinner and I was sitting on the couch watching TV and I just could not shake the feeling of being spaced out and tired. I thought it would help me to take a walk and get out of the house but as I was driving to the park I felt horribly dizzy, and I struggled to walk about a half of a mile. Most days I didn't feel like that, but I did sometimes. Then I started having occasional digestive problems but nothing major. None of the things I was experiencing were anything worth seeing a doctor about.
Then at the end of April I got what seemed like a virus. Before it started I would get these spells of feeling tired, flushed, dizzy, and a little nauseous. Then I stayed sick for a week, with a low fever, body aches (mostly soreness in my ribs and back), and nausea that went on for a week. I got over that, and then in the middle of May I started feeling those weird tired/dizzy spells again, and next thing I knew I got what seemed like the stomach flu. It was really bad for about 2 weeks and ever since then the symptoms have came and gone.
For a while I would wake up every morning with terrible nausea until I'd vomit and feel better. I stayed dizzy and lightheaded and would get dizzy after eating, but also if I hadn't eaten for a while. By the end of June and beginning of July I felt a lot better and thought it was behind me but then in the middle of July I started getting sick again. Since then, the symptoms have been off and on... I don't wake up nauseous as much as I used to but I do have some bowel issues, like shortly after I wake up I will get an urgent need to use the bathroom. I almost never have diarrhea, though. I have maybe three or four times during this whole thing and once it was because of antibiotics. I have terrible gas and bloating; sometimes I belch until I gag and even vomit.
Some other symptoms I have are hair loss and thinning skin. The hair loss isn't too dramatic but it's definitely more hair than I was losing before; I think it's slowed down a bit. With my skin, I can't tell if it's thinner or my veins are larger/darker but there is definitely a big difference in the visibility of my veins. I have some tiny red dots on my skin that look like I got stuck with a needle. I also get spells where I feel like I can't breathe, spells where I feel like I'm going to faint, and spells that just feel like my brain is about to shut down. Those don't happen terribly often but more often than I'd like them to! On the days I don't feel well, I don't like driving very far because I'm afraid I'll pass out (even though I never actually have).

I used to think chronic fatigue syndrome was all about being tired so I never seriously considered it, but the more I read up on it the more I realize how much symptoms can vary. I'm not exactly tired in a sleepy sort of way but I feel weak, dizzy, and lightheaded a lot of the time. I also feel like I need to eat more (even though I have no appetite some days) and if I go more than a few hours without food I start to feel like I could pass out. My blood sugar has been checked and is always in the normal range.

Some things I've been tested for are lyme disease, autoimmune disease, thyroid problems, anemia, and more. My vitamin levels are all perfect, I'm not anemic, my white blood cell count is not high, my blood pressure stays perfect, and I appear perfectly healthy. But I still feel terrible aside from some good days. Even on my good days I'm never back to where I was before all of this started. It's keeping me from working and going to school, which I really need to get back to doing because I'm 21 and am about to enter the "real world." If this is something that's going to continue for much longer I don't know what I'm going to do because I won't be able to finish school or start a career! I sometimes worry I won't be able to have a family or do anything with my life other than sit around and wait to feel better.

I thought for a while that I could have been exposed to mold... there's a wall air conditioner in the bedroom of the apartment I'd been staying at that's covered in mold on the inside, and I slept right under it. When I got that virus (or whatever it was) I spent pretty much all of my time in there so I would've gotten a huge dose of moldy air. But I moved back to my dad's about a month and a half ago and the problems aren't going away. I know it can cause a while to recover from that but surely not that long! My doctor also said that if that was it I'd probably have a high white blood cell count and more respiratory symptoms but I'm not sure. I've heard doctors don't know very much about it.

Anyway, I'm just wondering if chronic fatigue syndrome can cause these symptoms. What makes me suspect it is that it came on after a virus and I do test positive for a past Epstein-Barr infection. Sorry this is so long but I try to be as detailed as I can. Thanks for reading.

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 9/17/2012 2:31 PM (GMT -7)   
After reading more about it, I don't think I have CFS because I don't have any pain and I have a decent amount of good days... I think I might have post-viral fatigue syndrome: http://en.wikipedia.org/wiki/Post-viral_fatigue_syndrome. I think it's kind of like CFS but not as severe and can cause the digestive problems I've had as well.

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 10/19/2012 6:26 PM (GMT -7)   
Still wondering if anyone has any input on this. I saw an internist a couple of days ago and he says he sees a lot of people who came down with a virus and got a bunch of nonspecific symptoms that wouldn't go away. I was feeling a little bit off before the virus but that's what really set off the illness. He kept mentioning fibromyalgia, chronic fatigue, and chronic lyme but I didn't know if he actually thought I had any of those things. He was kind of just comparing what I had to those conditions.

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 10/22/2012 6:32 PM (GMT -7)   
I got tested for Lyme and plus my doctor said it's pretty rare where I live (West Virginia). I know the test isn't always accurate though. But thanks!

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/23/2012 9:14 PM (GMT -7)   
Lindsay, nice to meet you. It sounds like you have been through the wringer. I can't say whether you have CFS and/or FM but you are definitely on the road to being diagnosed. Both of these illnesses can mimic other illnesses so they all have to be ruled out. You have been having a lot of tests so that is good. The road to a dx with either Fibro or CFS can take awhile & can cause frustration but it is necessary. Once everything else is eliminated what is left can be one or both of these.

I have vertigo & was wondering if this is something you have looked into. The dizziness can cause me a lot of nausea & being light headed. It can come & go, so sometimes I am ok & sometimes not. It also comes on in different degrees so I can be just fine with just some dizziness. It is an inner ear problem and there is medication for it. I don't take any meds for it because I didn't like the side effects, so I just deal with it. lol

I have heard of people fainting with Fibro and with CFS so that certainly would fit in to either dx. Well, it is a puzzle that has to be put together & I hope you get all of your pieces together & you can get diagnosed. It is hard living in limbo. Do all you can to maintain & try to have some kind of a life. Exercise like walking or swimming are a good choice. It is good to keep moving & not let the illness take everything away. Eat as healthy as you can & get out with friends as often as you can. For me that is once or twice a week. Take care, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 10/24/2012 2:47 PM (GMT -7)   
Thanks so much for the reply. That was really helpful. I don't think I have an inner ear problem because I don't get dizzy like the room is spinning, it's more like just feeling a little off/spaced out.
I feel like I'm fairly close to a diagnosis too, especially now that I'm sticking with internal medicine doctors. I have another appointment on the 31st and I'm really looking forward to it.

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/31/2012 9:47 AM (GMT -7)   
Hi, Lindsay,

Have you ever looked into Postural Orthostatic Tachycardia Syndrome (POTS)? I am 21 and was diagnosed with it last year after six years of suffering and wondering. My primary symptoms include: rapid heart rate, high blood pressure, and shortness of breath upon standing. I also have: leg pain, dizziness, IBS, chronic fatigue, inability to exercise, difficulty standing for long periods of time, etc.

I do not want to go on and on, but I have much to share if you are interested in hearing more.

Take care, and good luck with your next appointment!

Brandi

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 10/31/2012 11:01 AM (GMT -7)   
Hmmm, I don't have leg pain or difficulty standing for long periods of time and my blood pressure is perfect (actually I think it gets too low sometimes which causes me to feel lightheaded). I think my heart palpitations are triggered by anxiety and/or medications.
I went to the doctor today and she asked if I had any heart palpitations, and she said they're normal in women unless they get really bad. I started getting some about a year ago around the time of my period, now that I think about it.
She thinks a lot of my symptoms are still from mono, and confirmed a lump on my neck as a swollen lymph node. She also thinks I might be lactose intolerant due to the gas pains and mucus in my stools. But I'm not sure since that didn't happen until I was sick, unless it could've been triggered by immune system being run down.

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/31/2012 11:12 AM (GMT -7)   
I just wanted to let you know of this illness, as not many, including doctors, are aware it exists. Symptoms vary greatly from day to day and person to person, but I was only detailing my personal experience. What triggered my downward spiral was an ovarian cyst and case of mono back in 2008.

Regardless of the reason(s) for your feeling unwell, I hope they are resolved soon!

Take care,
B

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 10/31/2012 11:37 AM (GMT -7)   
Thanks for sharing, I've seen your story in the anxiety forum. That's really interesting that it started with mono and an ovarian cyst. What do you do to manage it?

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/31/2012 11:50 AM (GMT -7)   
Though my illness became most apparent to me during 2008, I learned last month that my case is genetic. To manage it, I am on medications -- one to control my rapid heart rate and one to lower my blood pressure. I also do recumbent exercises such as minimal swimming and bike riding. Otherwise, I keep a consistent sleep schedule, stay hydrated, eat small, healthy meals, and drink an energy supplement called Spark. It is difficult to treat, but at least I can still get out of bed every day.
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