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Chronic Fatigue Syndrome
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Posted 2/13/2015 9:15 PM (GMT 0)
I can't even believe I found this group! I just joined today! I'm 41 years old, used to be normal and healthy until I developed thyroid issues (noticeable ones) in 2009. Since then, I've been trying to take charge of my health, eating more healthily, but because of my sedentary job, I am in front of a computer about 10 hrs a day. I am hoping to begin exercising more regularly once the weather breaks. I bundle up and go walking with my mom as often as possible, but I have to hold on to her for MY sake. She's in better shape at 75 than I am! 

Since last summer, I have started getting dizzy when standing and talking to people!  It was the WEIRDEST thing! Now it happens when in stores, I feel like my head is blurry, I can't focus on really anything, and as of yesterday, I won't ever go in without a cart again or someone to hold onto. When the symptoms come on, I feel like I will lose my balance or pass out. I don't black out, but I feel like if it continues I will wake up to people standing over me asking me if I'm okay, then I get more anxiety!  It's HORRIBLE.

I can't drive on the freeway anymore (since fall of 2013) because I get this weird feeling, almost like I'm floating, so I try to relax and then it's like my body relaxes TOO much and I'll fall asleep, though I'm not sleepy. Not sure if it's anxiety or what. It's HORRID. It has now started happening anywhere I drive, even back roads. I feel trapped in my body because I don't know what this is called or, more importantly, how to ever fix it.

This has also affected me riding a bike and then eventually now walking. It's as though I can't process what my eyes are seeing as fast as I'm going. I don't know if this could be as a result of staring at a 'still' screen all day.

I know this sounds so weird and that's why I haven't tried to explain it to a doctor yet. Been trying to self diagnose. I know this thread is in CFS, but CFS the symptoms don't fit me. This thread does, though.

ETA: I suppose I should note that I have six dc, work at home, homeschool, and  have moved twice since spring of 2013, across the country each time. I have also had surgery last spring. I wonder if this kind of stress has worn me out beyond repair  ? 

Post Edited (JoyH) : 2/13/2015 3:20:43 PM (GMT-7)

Posted 2/13/2015 10:22 PM (GMT 0)
Welcome to HealingWell, JoyH. I saw your post and thought I might offer some advice. Unfortunately, this particular forum doesn't have a moderator so posts are either answered by other members or left unanswered.

Have you had any tests done? Have you been tested for various diseases/conditions and do you know what your blood pressure is? Do you have any bouts of anxiety or nerves?

The symptoms you describe might be several conditions, including blood sugar, blood pressure, other issues and even anxiety.

I know you are worried about this.
Posted 2/13/2015 11:02 PM (GMT 0)
Hi Lanie!

I tend to have low blood sugar (don't eat enough or often enough, MY FAULT) but I'm trying to make that a priority now. I also have always had and still do have low blood pressure.

I have read through the whole thread now and some things stuck out to me. I am supposed to be gluten free (which I am) and dairy free (which I cheat) and I don't always take my supplements, but I definitely notice when I need them, especially magnesium!

Chrisco, I could relate SO much to what you said. I am so envious of my old self that would take feeling normal for granted, be able to run into people while out at the store, or at church, whatever, and be able to talk to them like a normal person without feeling like I need to bend over and put my head between my knees!

I definitely am battling anxiety and I believe that what happens to me while driving and in stores is anxiety/panic attacks. It could also be from low blood sugar exacerbating it as well as lack of enough sleep (chronically), but I am now anxious about HAVING panic attacks, etc., since I have had them in the past. Not a happy cycle.

I would like to just add that I have watched closely and SLEEP IS HUGE!!!! Last weekend I had a really good day Sunday because I slept in both Saturday and Sunday. ALSO, I make a drink called the Singing Canary, VERY nourishing for adrenals and is delicious and I always feel SO good when I drink it (so I should drink it every day! DUH!!!) but I tend to get caught up with the stress and demands of everyday life and end up putting myself last.

I have been trying to make it a point to go to bed and wake up at the same time every day, not too successful yet, and trying to get to bed earlier. I usually go to bed between 12:30 (used to be 1:30-2:00 which is when this all started 4 years ago after the birth of our now 4-year-old and working crazy hours) It seems the later I go to bed, the more solidly I will sleep. If I try to go to bed at 10:00 then I will wake around 1 and lie there awake.

EXCEPT for when I had the flu in Dec. I was sleeping a lot more and even though I felt horrible, THIS thing was much better!

Also, I do not wake up with it. I feel pretty normal when I wake up, but usually in an hour or two it will hit me, or later in the day, probably when I need to eat and am tired.

There must be a lot that goes into this, but I have been praying for an answer, and I believe it is in taking GOOD care of ourselves! I am holding out hope that we can find our answers and get back to full health!
Posted 2/13/2015 11:16 PM (GMT 0)
Oh, (sorry for the book), one more thing....

When I would talk to people while standing and feel icky, there must have been some sort of adrenaline response which drains or taxes my body, in its weakened state, more than normal people. So whatever it costs my body in the surprise and greeting and emotions of all of that, it makes sense that adrenals can be involved in some way.
Posted 2/13/2015 11:37 PM (GMT 0)
Hi again. I would advise you to have a complete physical exam done with all the lab tests, etc. and explain what's going on to your doctor. That's to get an idea if there's anything metabolic going on.

Anxiety is another matter and you can handle that in different ways. We do have a forum here, Anxiety-Panic Disorders, if you would like to post there for that support. Your doctor should also know what's going on with that and you can get help there, too.

If you do tend to have low blood pressure, I don't know how to advise you. Dealing with low blood sugar is probably easier. To keep blood sugar more level, you need to eat more often, smaller portions, and not overload on carbs. Eating too many carbs at one time (in one meal) will make your blood sugar shoot up and then drop and it's when it drops that you might feel shaky and dizzy.

I understand you have quite a schedule to live with but you do need to take care of yourself so you can take care of your family and your work. Make sure you eat breakfast - but, again, not high-carb or you'll drop later on and feel shaky.

Maybe you should see an endocrinologist is you know that you're having issues with adrenals. That's not something I'm familiar with.
Posted 2/14/2015 12:49 AM (GMT 0)
Hi Joy! Sorry to hear that you're experiencing this "dizziness disorder" . It is the oddest thing that we can't stand and have a conversation with someone without feeling wobbly and like we're going to fall over. I find it's worse when I'm speaking with someone who is very animated or speaks quickly. I can say with certainty that mine is not due to anxiety since I love talking to people. The anxiety I feel is when it starts to occur!

The most frustrating thing is that I was symptom free for a few months during 2014 and now I'm as bad as ever. As you can read from my prior posts, the symptoms went away for awhile when I did yoga. Then they went away again when I went on a naturopaths restrictive diet. I keep on thinking that I've figured it out and then I realize that I haven't. I've been to every doctor and they just shrug with the exception of my ophthalmologist years ago who told me we're experiencing something called occipital ophthalmic migraines. But again, I haven't been able to identify the trigger.

My next trip is to a rheumatologist in a few weeks. We'll see about this latest doctor. If it doesn't get better, I'm going to go on that "I can't eat anything diet again (with the supplement powder)" and start from square one.
Posted 2/14/2015 2:23 AM (GMT 0)
Thank you, Lanie. I appreciate your words. I have Hashimoto's (autoimmune) thyroiditis and am seeing a naturopath for it so he runs any blood tests I need. I need to schedule an appointment with him, as it's been a while.

Alan, what foods are you currently restricting (is it just nuts or gluten, too?) Are you eating dairy? I have been told that if you're allergic to gluten, there's a very strong chance you're also allergic to diary because the proteins look very similar to the body.

I am thinking about going on another 30-day gut repair diet again and start from square one myself!

How disheartening to think that you've finally shaken this stupid thing only for the symptoms to return! I'm so sorry! Would love to be free of this thing once and FOR ALL!
Posted 2/14/2015 6:11 PM (GMT 0)
Me too Joy! I'm allergic to gluten so I rarely eat it, but that's more of a gut thing. Other than that, I don't eat nuts like I used to, but I don't avoid them. I eat dairy because it would really depress me to have to avoid gluten (thought it's not as difficult as it used to be... thanks "Three Bakers" company!) AND frozen yogurt!

But if the Rheumatologist can't find an underlying issue, I'm going to back on that detox diet and cut foods I love one by one this time. No dairy, no soy products (that REALLY hurts!), no nuts, no sugar, no corn, potatoes or tomatoes for three weeks. Please Doc, find something!

As anyone on this post knows however, we would do almost ANYTHING to not feel like we're going to fall over or like we're walking in a cloud.
Posted 2/15/2015 5:45 PM (GMT 0)
I'm not supposed to be eating dairy but I do have mozz cheese. I think that's about it. It could very well be a culprit, as well as the lack of enough sleep. Like I said, I definitely notice it is worse when I'm not getting appropriate sleep.

I used to not do any dairy then just missed it too much so I do eat it on my GF pizza, sue me! LOL

I also had low iron when this all started back last spring/summer (though I've had a different kind of dizzy that I know for SURE is tiredness) but the feeling that I'll fall thing was just last spring/summer. It seemed to get better while I was taking care of my iron, but since you're not supposed to have to take iron forever, I stopped taking it to see what would happen, as instructed by my ND. So I need to get an appointment with him, get some blood work done, and get my butt back on a good diet, probably needing to eat more meat and drink more water.

I so appreciate the dialogue. So glad to know I'm not alone!  Thing itself is bad enough. Feeling alone in it is 1,000 x worse!

How old are you, Alan?  I'm 41. Wonder if age has anything to do with this. It seems like the older I get, the more time in 'the shop' I'm needing. OY! 

Posted 2/15/2015 6:19 PM (GMT 0)
I'm 56. I'm active and still play basketball, tennis etc. though when I'm off balance it can be a bit of a challenge. I try to play anyway because everything feels better when I do.

My symptoms probably began around your age Joy, because I think I had an MRI of the brain in 2000. I ended up having a pituitary tumor which I thought was the cause of this, but as we now know, it wasn't. So getting older just means we deal with more physical stuff that doesn't go away. On the good side of aging (because I don't want to depress you!) it has its advantages in how we see the world, how much more we learn and how we handle things. Believe it or not, I wouldn't go back to forty!

We have some similarities which might be indicative of this mysterious illness we have. Both of us have hormonal issues (yours thyroid and mine pituitary), we don't sleep and we have food allergies. Those are pretty unique. I wonder whether the others on this post share these maladies. I'm not sure how this problem can be researched, but it would be a beginning.

In our yard we have three free standing letters about 2 feet high that spell out "JOY" (ironic?) . But the J keeps falling over leaving OY. I agree with you: that's how I feel!
Posted 2/15/2015 6:40 PM (GMT 0)
Thank you for the giggle today. I really needed that!!

I have never had an MRI so we may have pituitary tumor in common, who knows! Have you had any treatment for yours?
Posted 2/18/2015 4:10 PM (GMT 0)
I have been known to have low iron. Last summer (when I had these symptoms), it was really low. After a few weeks (maybe 5-6) on the iron I started to feel better. I was on it until probably October steadily. Then would take it sparsely.

I wonder if we all have low iron. That would definitely contribute to the "low oxygen symptoms" we have. Just a thought.
Posted 2/20/2015 2:20 AM (GMT 0)
The treatment for my pituitary tumor was a pill called cabergoline. The pill shrunk the tumor and brought my hormonal levels back to normal. I still take a small dose weekly and never had any side effects.

The low iron is worth investigating though I think it's more of a "girl thing" from my experience. Is your thyroid issue causing the low iron? I always thought they were related. But when I visit the Rheumatologist in March I'll mention that and see what turns up. I could understand how low iron would make a person dizzy or lightheaded.

Had a conversation with someone at work yesterday morning for about 10 minutes and when I stood up from my desk I felt like I was going to fall over. So weird!
Posted 2/20/2015 3:56 AM (GMT 0)
I hadn't thought about the thyroid thing making my iron low, though I think the low iron is related to something menstrual, possibly. A-hem.

I'm sorry about your situation at work today. That sounds like low BP to me...?

Tonight we went to dinner for my husband's birthday and I had a hard time walking to the bathroom from our table and back again. I felt like I was walking in a cloud almost and kind of like the floor wasn't where I thought it should be. I hurt my ankle last year and I wonder if I have lost some proprioception in it and maybe that has caused some of this.

I hate constantly trying to figure this out. I am looking forward to the warmer weather, though I don't know why. I seem to be able to do less and less. It's so disheartening!

I am due to have some blood work soon that will check my iron levels and some other things. Hopefully, we can all find a way out of this.
Posted 5/20/2015 3:02 PM (GMT 0)
hi guys , i hope u guys are still here on this tread i know is a year after i just saw this on google just right now haha, but anyways , i have the same problem , dizzy while standing or dizzy when in store resto etc. its like im trap on my own head, ha if u know what i mean, how did u guys fight this and what did u guys tell your doctor because my doctor always telling me that im fine all the time, but i dont feel fine, so pls pls pls help me, because i dont know what to do right now ive been feeling this for 3 years now 😔
Posted 5/20/2015 3:07 PM (GMT 0)
hi guys , i hope u guys are still here on this tread i know is a year after i just saw this on google just right now haha, but anyways , i have the same problem , dizzy while standing or dizzy when in store resto etc. its like im trap on my own head, ha if u know what i mean, how did u guys fight this and what did u guys tell your doctor because my doctor always telling me that im fine all the time, but i dont feel fine, so pls pls pls help me, because i dont know what to do right now ive been feeling this for 3 years now 😔
Posted 5/20/2015 4:01 PM (GMT 0)
there are 2 possibilities that I'm dealing with:

1. My iron was drawn last summer when I first started having this and it was VERY low. I went on iron for a few months, felt better, then came off. In March I had it drawn again and it was VERY LOW. So I am back on iron now and symptoms have decreased again.

2. My ND told me that the grocery store thing has to do with the mid-brain firing too fast for the rest of the body to keep up. He mentioned buying yellow glasses to wear to help with that, but it's only a Band-Aid. He said there are tests that I need to figure out WHY that is happening, what is lacking, and then we can help it by supplementing properly.

HTH.

Posted 6/2/2015 7:52 PM (GMT 0)
Hey guys, I'm SO glad to have found this post... I have been experiencing the same mysterious dizziness as you all since July 2012. One day at work (grocery store) I suddenly got dizzy (felt like I was swaying and it wouldn't go away). I had never felt this way before, but ever since that day I've been plagued with this stupid dizzy, unbalanced feeling when standing or sitting. I visited my doctor several times about this (looked at me like I was crazy many of those times). He sent me for a myriad of tests: several blood tests (checked for anemia, diabetes, thyroid disease, etc), checked my blood pressure several times, CAT scan, EEG, holter monitor (ECG reading) and visited a hematologist. Everything came back fine except the blood test results said I was severely anemic. I was put on iron supplements for about 2 months, my energy levels went up and I was generally feeling better, except the dizziness never went away. Since then I take a multivitamin (with iron in it) every morning and I try to eat foods that are high in iron, so anemia is most likely not the issue. With the dizziness came anxiety because I was always afraid that I'd pass out. I had never had anxiety before the dizziness, so I don't think the anxiety is causing the dizziness.

A little bit about me...

I'm 24. I have no allergies. I eat pretty healthy. I try to exercise regularly (I got myself a gym membership a few weeks ago, so I'm working out more lately). I'm at a healthy weight for my height, but I could definitely lose the 10-15 pounds that I've gained since all this dizziness stuff started. I don't drink or smoke. I sleep on average 8 hours a night. I have glasses (and I recently saw my optometrist and my eyesight hasn't changed). I used to be someone with a lot of energy and spunk at social events and in general, but ever since I started getting dizzy I dread the thought of going out because I know I'm going to get dizzy and that puts a big damper on my mood and I just want to leave the event a.s.a.p.

I have pretty similar symptoms to the ones mentioned before me. If I don't go into a grocery store or a big store (like Wal-Mart) with a basket I feel like I have to scale the walls in order to stay upright. The dizziness seems to be worse in really open spaces... I feel like I really have to push my feet in order to get to the other side of a really wide aisle if I'm not holding onto anything. Standing up talking to someone is dreadful. The dizziness is not as bad when sitting down, but it's still there. Sometimes I'll be sitting in a restaurant and it'll hit me and I won't stop fidgeting and moving around until I leave the restaurant.

It's really awful to feel this way and it's stopped me from doing so many things. I even had to drop out of University because it was so unbearable. I'm starting school again in August, so I would LOVEEEE to find a way to get better a.s.a.p. The dizziness actually went away for a few months recently (I'd go into grocery stores with no problem at all), but it's been a month that it's back.

I'm going to start up yoga again and try to eat healthier and exercise more often and see if that helps at all. I'm going to research some of the things you guys talked about above and see if that gets me anywhere. Should I look into magnesium, fish oil, and/or other supplements since it seems to have helped some of you?
Posted 6/2/2015 8:21 PM (GMT 0)
Yes!  I understand all of the symptoms you mentioned!  I am still battling this even though my iron levels have come into the normal range now after being on iron since March. I definitely am worse if I don't get enough sleep, 8 hours is the least I can survive on, and that's only surviving. I need about 10 a night.

I am 41, have had 6 children, and also have Hashimoto's autoimmune thyroid. Maybe you want to look into having your thyroid antibodies tested. I also have adrenal fatigue. I think all of this is intertwined somehow. Interesting that your iron was low and you experienced the same problems I had with low iron. I would never have thought that anxiety would have a link to low iron, EVER.

The important thing is that we have each other and we have a safe place to come and talk about our symptoms and be understood. I think the worst part of all of this is not feeling understood, feeling 'weird' because you have to leave an event.

I do pray that this will not take over my life. The thought of that is so overwhelming, so I hold on to the hope that we can all get better by helping each other out with things that have worked for us.

Posted 6/15/2015 4:57 PM (GMT 0)
I have had my thyroid antibodies tested in the past and everything was fine.

I came across this article about Neurocardiogenic Syncope: http://www.cccgroup.info/neurosyn.asp and I thought I'd share it because it REALLY sounds like this is what I (and maybe some of you) have.

It requires a Tilt Table Test in order to diagnose it, so now I just have to try and find a way to explain this to my doctor and have him send me for one (which isn't an easy task).

Have any of you had that test and if so, what were the results?
Posted 6/15/2015 10:45 PM (GMT 0)
Has anybody considered lyme disease? Just a thought. I have lyme and have a feeling of off balance. Also tingling on head plus lots of other symptoms.
Posted 6/19/2015 8:35 PM (GMT 0)
Hi guys, I had also been experiencing these awful issues for about 2 years. I'm a 28 year old guy, who was previously very active and relatively healthy. I have a history of acid reflux and hives on my hands and feet, but I've always been able to deal with that. This on the other hand, I can't. It is hell.

I've had a myriad of tests, including: head MRI/EEG/ENG/cardiovascular stress test/multiple EKGs/sleep study/heavy metal blood test/h-pylori breath test/thyroid blood tests (TSH,T3,T4)/adrenal blood tests/lyme testing (iGenex as well as CDC)/spine x-ray/POTS test/ultrasound of chest, neck, gall bladder/atlas adjustments/chiropractor adjustments/epley maneuver.. I'm sure a few more that I've missed, all normal. I've tried exclusion diets for lyme and migraine, no luck.

Excuse my language, but what the actual ****? Honestly, how is this something we are all still dealing with? I've lost respect for every doctor on this planet. This isn't just a 'little inconvenience' like it may sound to those who can't understand this feeling. It's not just 'a little dizzy' now and then. This is a life altering, very real, debilitating disease. My life has been on hold for 2 years and it's absolutely devastating. I am so sorry for everyone that has posted in this thread, because it means you share the same helpless feeling I have every day. Our health care system has failed us, and I'm really scared that this will have no end.

I've never been told CFS, mainly just migraine. I've been treated by neurologists for migraine for over a year, guess what? no luck. There HAS to be a reason for this. I'm unsteady on my feet, off balance all the time. Head pressure comes and goes but can be very severe. And the visual symptoms, just as everyone else has described.

What is there left to do? I need hope moving forward because I'm not sure how much strength I have left in me.
Posted 6/25/2015 4:09 AM (GMT 0)
Have you gotten a brain MRI? You could have an acoustic neuroma. I did, had surgery, and put my CFS into full-blown stage. But MRI important.
Posted 7/4/2015 2:08 AM (GMT 0)
Hi.new member.ivebeen having feeling of being off balance when standing I start to rock back and forth as if trying to find home position.feel my feet going heel to toe. Been to ENT.sent me to neurology.ENT said could not find anything wrong.neurology visit for exam found nothing but going to do brain scan.he said he didn't expect to find anything.taking lots of b.p. Meds but cardiologist doesnt think its meds.am ok as long as I'm sitting down or in bed.when standing I feel like I have to hold on to something.60 yrs old but have always been active.cannt stand on one leg very long,but go swimming and cut yard but feel off balance.spend too much time sitting back in recliner cause feels the best.if anybody has had anything like this,pls share your best info
Posted 7/4/2015 3:14 AM (GMT 0)
Have you ever seen a biological dentist?
Head issues could be jaw issues-most people try everything else
Im not sure why
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