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Posted 4/12/2011 2:06 PM (GMT 0)
Hello, I have been feeling unwell for almost 8 years now and things are getting to the point where I feel like I will be dead within the next 6 months if I don’t get some answers. I do not know what is wrong with me and I am posting with the hopes that someone will recognize some of my symptoms and possibly identify what I might be going through. I am desperate and appreciate any and all comments.

In the beginning when this whole thing started I had just come back from a camping trip and I remember driving home completely exhausted and I was experiencing what I would call brain fog or a spaced out feeling. I thought maybe I was sleep deprived, and I may have been, however this has not gone away even to this day, it has only gotten worse. But, this is just the tip of the iceburgh.

To make a long story short, this was the beginning of what would turn into a long battle with insomnia and anxiety. The insomnia was so bad I would fear going to bed because I was afraid of not sleeping. I spent the next several years on anti-anxiety medications, sleeping pills, alcohol… basically anything that would relax me and help me sleep. I would have to say that I went through a very emotionally and physically draining period of time with all of this and believe it did a lot of damage to my nervous system.

I have been medication and alcohol free for some time now however my “illness” whatever it may be continues to get worse.

Here’s the symptoms I’ve been experiencing over the last several years:

• Feeling spaced out all the time, brain fog, mental clarity off, eyes feel unfocused/dazed
This has been the worst of my symptoms over the years and it’s there 24/7… some days are better than others, but it’s always noticeable. This is especially worse when in busy visual environments, and under fluorescent lighting.

• Unable to Concentrate
I have a hard time concentrating or focusing on things. This is especially troublesome when talking to people, I often hear what they are saying but my concentration isn’t there so I don’t comprehend or remember most of the conversation.

• Fatigue
I always feel sluggish and just plain exhausted. I can’t do more than 10 minutes of housework even without feeling the need to rest. Even though my body feels tired and run down, I often can’t nap or rest during the day because my brain doesn’t feel like it needs sleep and it won’t turn off.

• Yawning
I yawn all day long no matter how much sleep I get. Sometimes more so than others but every day I yawn at least 50 to 100 times without exaggeration.

• Stomach/Gastrointestinal
I feel nauseous quite a bit and get this “flu like feeling” where I also get clammy, chills, and lose my appetite. These episodes have been happening much more frequently now. I am always gassy, and feel slight pain in my stomach (like a bloated pain). I have spent years on PPI’s and Antacids but they don’t help and I can’t seem to heal my stomach. I have lost 30lbs over the last year because of how I feel all the time. I’ve had a GI Endoscopy twice and there aren’t any problems.

• Chronic Sinus/Nasal Stuffiness/Ear Fullness
I get a lot of sinus colds (6 this past year), and I always seem to be clearing my throat and blowing my nose. Yawning all the time doesn’t help, because when I yawn my sinuses get plugged and I need to blow again. For the most part the mucus is thick and clear, except for when I have a sinus cold then I get yellow or green color.

• Dizzy, wooziness, off balance feeling
Not noticeable all the time but something that I do experience often.

As if this wasn’t bad enough, I was hit with new symptoms on top of these which started in December of 2009. It started with a dull ear ache which I experienced off and on and then dizziness and head pressure which lasted 24/7 for a couple of months. Since then I have developed these new symptoms which I now have daily as well:

• Eye Floaters
I have never had eye floaters before, and over the last year I have developed 20+ in each eye. If I even squint my eyes just the slightest little bit I can see hundreds more raining down like a waterfall. My floaters are chains and clumps of transparent cells and are noticeable even in low light conditions. I’ve been to the opthamologist and they don’t see anything, which indicates they must be close to the retina (as they also appear very large to me).

• Tinnitus
Started around the same time as the eye floaters and has gotten worse along with the eye floaters. Sounds like the electrical buzzing noise you hear from your television or computer monitor.

• After Images
I see after images of certain things. Reading text off a computer will create an after image of horizontal lines which can last up to a minute before it fades away. Car tail lights will also create strong after images. I can look outside at a tree in the yard and look away and see an outline of the tree for a few seconds.

• Eye, Ear and Jaw Pain
I get a dull earache pain and pain in and around my eyes which is almost constant. The eye pain is made worse by certain lighting conditions and when looking at certain objects like car lights, traffic lights, etc. The pain also feels like strain or tension which goes across my forehead and in to the temple area.

• Muscle Twitching, Weakness and Numbness
This started as an eyelid twitch and has now progressed to muscle twitches all over my body… sometimes I have 3 or 4 in a minute or two in various parts of my body. My muscles have also become very weak and I experience a very irritable sensation in all of my limbs that is similar to restless leg syndrome. My muscles are also sore as if they are contracted all the time. I have numbness in my left hand which goes into a couple of my fingers. I feel what I would describe as resistance when I move my limbs. They feel heavy, as if I am trying to walk in water. These symptoms are progressing very rapidly.

• Headaches at base of skull
Experiencing occipital neuralgia… was getting these daily but now only get them maybe once a week


Tests that I have had done:

• MRI of Head – Normal
• MRI Spine – Degenerative Disc Disease & Disc Bulging
• Blood Work – Normal (Thyroid – Always borderline normal (high)), Heavy Metals (Aluminum High)
• Lymes Disease – Negative (Tested 1 time in Canada)

I know most people will say to stop worrying about things so much and it’s just anxiety but I know my body and I know there is something seriously going on. Things have progressed so much over the years slowly but now I see huge changes from one week to another and I feel like time is now running out. I need to get some answers, and I’m tired of doctors telling me they don’t see anything wrong. If I have to live with this stuff the rest of my life then I can deal with it, I just want to know what’s going on. If anyone has any comments or can relate to my symptoms please let me know.

Thanks in advance.
Posted 4/12/2011 3:53 PM (GMT 0)
that was well written and could have very well been written by me. I have almost all those same exact symptoms. the only ones I do not have are the headaches and eye floaters.

I have been diagnosed with fibro. I believe that I may have lupus too but no diagnosis because my blood work keeps coming back negative. I have been tested for MS and lymes disease also and they come back negative. MRI showed nothing but large thyroid which has since come out. I have also had very low iron, b-12, vit. D levels which are all under control now and yet I still have almost all those symptoms. And still, the diagnosis is fibro.

I see a rheumatologist for my fibro. He is the one that diagnosed it and he is the one that is treating it with meds. Right now I am having a terrible "flare" and everything (and I mean everything) is in pain. I just go over a sinus infection that took two rounds of meds to clear up, had radiation treatment before that, had thyroid out before that, had oral surgery for an infection in my jaw bone before that, and the list just seems to go on and on.

Its such a mystery as to why some people are hit with this syndrome. Its also a mystery as to why some get only a few of these symptoms and some get them all.

I think the clue for us is finding the right kind of doctor, one that believes in fibro and treats it according to our symptoms. Learning to pace ourselves and saying "NO" when we really cannot/should not do something too physical when we are feeling poorly. Learning to get up and keep moving even when we feel like we need to stay in bed all day. (Personally I feel more pain if I stay in bed.) And, learning everything we can about this syndrome so that we can educate everyone else around us.
You can find alot of that info right here on this forum. It is titled "fibro 101" and is the first posting on this thread.

l look forward to hearing more from you. Please keep me posted on how you are doing.

Hope your days ends much better than it started.
Posted 4/12/2011 4:51 PM (GMT 0)
I have had a lot of what you describe so was often told "you have Fibro & CFS but you also have something else...we just don't know what it is." Yup...Lots of reassurance there so I commiserate with you.

Here are some suggestions:

-research the tests for Lyme - some are better than others, some give pos or neg fake results - and then ask
to be retested. With your symptoms, I think it would be a legit request.

-as for dizziness/loopiness/eye stuff/etc - two things to consider:
-check your blood pressure - could be high but low is common in Fibro. Mine is often 70/45 with a pulse of 60. I
was finding myself in supermarkets where I could see people's lips moving but could not hear them-head
muffled, all that kind of thing. I would just check out, so to speak. My BP also drops when I am standing
as well (orthostatic BP). I know take a medication to help bring it up when I am symptomatic and it
kinda/sorta helps but it will get me out of bed cuz low bp is exhausting to your whole body. I haven't
noticed extra floaters but I do see stars which they believe is me seeing the white blood cells scooting thru
the collapsed veins in the eyes when my pressure is really low.
-Have yourself checked by an eye/ear/nose/throat guy. Nobody believed me when I told them stuff just like you
say but it turns out both my eyes want to be dominate and it screws up all sorts of stuff. I forget what it's
called but it's Labarynth something - I'd have to go look at my med records but pm me if you want the
name my doc calls it. Anyway, I had to stop driving for nearly a year because I was so dizzy, went through
6 months of dizzy rehab but it will always be with you so I continue to do the tricks they taught me in
rehab - even to the point where it matters what position my H walks relative to where I am - just a little
in front or a little behind can send my brain crazy. And Dizziness is not always what we think it is like
being drunk or something. Walking from a high ceiling to a low ceiling can just about drop me yet I had
no idea those things I was feeling were all related to being dizzy.
-You might also check the muscles in your neck - the bigger, ropy ones that come up the front sides.
sometimes triggerpoints in those muscles can cause all kinds of issues.
See an Endocrinologist - You never know what is lurking from a poorly/bad functioning gland. A couple of mine
were pumping out 100's of times what they should have been.

It's all a big mess right now but you'll whittle it down over time. I really wish you all the best and truly hope you find out what is going on.
Posted 4/12/2011 6:47 PM (GMT 0)
Hi, jr, and welcome!  It is frightening when you don't know what is happening.  Many of the things you listed you can have with fibromyalgia.  Things like fatigue, depression, anxiety, cognitive memory problems, headaches, vertigo/dizziness, intolerance to bright lights, tinnitus, and muscle twitching, weakness, and pain.  BUT these can be symptoms of other illnesses too.  One is Lyme and it looks like you tried to find out.  But, if I were you, I would have the blood work sent to IGeneX Labs in Palo Alto, California.  They are supposed to be the most accurate labs in diagnosing Lyme.  If they say your blood is negative, then I would trust that.  Here is a link about them.  Also, you can find out more on the Lyme Forum here on HealingWell.

http://igenex.com/Website/

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Check out the links called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there!

Please try to settle down.  First of all, stop thinking that you are dying.  I highly doubt that.  Your doctors would have seen something and your blood work would have shown a lot of problems if you really were sick enough to be dying.  Anxiety can make you totally miserable and also cause more pain.  I used to have really bad anxiety problems.  I was always trying to diagnose myself and also constantly thought about how I was feeling.  My whole life revolved around my health issues.  It sure isn't fun. 

 

One time I felt I couldn't see well out of one of my eyes.  I was constantly checking them and went to the opthalmologist about it.  They couldn't see anything wrong but, just in case, sent me to an Opthalmic Oncologist!  Oh boy, was I frightened.  When they took my history, they said they had never had a patient in all their years of practice with as much stress as I was going through at the time!  They checked my eyes, they were perfect, so the diagnosis was stress.  And you know what?  They were absolutely correct!

 

Stress really can cause a lot of it but you do need to get a diagnosis.  Perhaps you need to try another doctor.  As others have said, they see a rheumatologist to help with fibro.  I use a board certified Internist for my fibro and everything else.  But you need to make sure that they treat fibro patients regularly...just in case it's fibro causing a lot of your symptoms.  You have to have other illnesses ruled out before a diagnosis of fibro is generally given. 

 

I hope you can get some answers soon.  It is so frightening...especially when your mind can conjure up things like you are dying.  Try some Lamaze breathing techniques to relax, pray or meditate, and try focusing of something else other than your health.  For me, I love to read and do genealogy.  That takes my mind into a different area and my pain actually gets put in the background for a while.

 

I'm so glad you joined out family.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

 

Sherrine

Posted 4/12/2011 10:21 PM (GMT 0)
Hi Jr,

Sorry you are feeling so sick. I was extremely exhausted and still am,but do see an improvement during the morning hours now. I was sick with severe fatigue and tested for Epstein barr and was positive,although there really nothing to do for that medically but a lot of rest and possibly b12 shots,which did nothing for me.

A year later I was diagnosed with fibromyalgia and chronic fatigue and hypothyroidism.Your fatigue could be viral like Epstein,or could be a combination of fibro and thyroid problem. You need to see a specialist that deals specifically with fibro and let them do someone bloodwork. I'm sure you will find an answer to help you feel better.Fibro doesnt go completely away,but if you can rest and get Meds that might help with your energy,you vwill have a better outlook ,and have less anxiety.I t can be really scary ,when you feel like youre dying.It happened last week to me,but my thyroid test were very low.You need to tell the specialist that you know something is really wrong ,and you need help.


Some drs in alternative medicine are verygood with this.It can be depressing, and we all have our crying days,but you have to get up and be an advocate for yourself.
Feel better
Sage
Posted 4/18/2011 7:51 PM (GMT 0)
before all these symptoms started did you take levaquin or cipro or any other flouroquilone antibiotics?
Posted 4/18/2011 9:51 PM (GMT 0)

Hello Jr991 and welcome.  Since everything started after your camping trip I was wondering if you got checked for lyme disease or something like that that may have bit you while camping?

But otherwise, I agree with mscrowbar, finding a doctor that believes in and patiently treats fm is key!  Don't feel bad or let people tell you to "get over it" or "try harder to do better!"  They DON'T understand, no matter what they say.  Be confident that you are listening to your body, and sensitivitly to your body's symptoms will guide you to finding relief and get your life back! 

Where do you live?

Posted 4/18/2011 10:32 PM (GMT 0)
Hi there,

Take into consideration that you have aged eight years since this started. We go through a lot of changes in that period of time that isn't always necessarily due to fibro. It is due to just plain old aging.

It sounds like you could have fibro or chronic fatigue syndrome. They may be one in the same from what I have read. You didn't say a lot about pain other than the headaches.

When you see the rain appearance in your eyes, is it in one or both. If you are seeing this in both eyes, it is most likely coming from the brain. Which could be a type of migraine. Have you seen an optimologist? They are best for distinguishing eye problems. If it is just in one eye, it is most likely something to do with your eyes. I get a type of migraine that is called an occular migraine. I see patterns of light. They go from one side of my pereferal vision to the other. It takes about twenty to thirty minutes to go away. It often happens when I have eye strain, and sometimes mental stress can bring this on.

When you are too aware of your body, you tend to notice things that you would normally ignore. Things seem larger than life, and that causes a lot of mental stress, which makes your condition (whatever it may be) worse. So try to relax. For your headaches at the base of your skull, try what is called a bed buddy. It is a tube fill with rice that you can heat up in the microwave. You can get them at Walmarts. Then you place it around your neck, the moist heat will take your headache away. You may have a sinus infection or possibly allergies. It almost sounds like you do. And allergies can cause all kinds of wierd symptoms.

I would look for a doctor with a very open mind. And one who does believe in fibromyalgia. Not knowing what is wrong with us is very scarey. I looked at your profile and can see you are asking advice in a lot of different places. Which is good. We have a wonderful forum here with a lot of different illnesses so it is good to ask around and see what other people's experiences are. And keep an open mind yourself. Try to relax. When you do see a doctor carry a list of all your symptoms and what all you are trying to do to feel better.

I highly suggest walking as much as you can. And drink a lot of water. I put a wedge of lemon in mine and it not only is good for vitamin C, but also lemons clean the liver. Try to eat right, and try to go to bed at the same time every night. I slept for two years with this and it was horrible. So I know how it is when you can't sleep at night and want to sleep during the day. It is no fun.

I hope that you feel better soon. You have been given some wonderful advice here at this forum. I hope that it helps. Most of all, try to relax. The stress only makes things worse.

Hugs, Karen
Posted 5/17/2011 2:10 PM (GMT 0)
Thank-you to everyone who took the time to respond to my post. I apologize that I haven't responded sooner as I have had all I could do to get through the last month.

Here's an update:

I am going to see a Naturopath at the end of the month who is going to take my blood for the Lymes test which is going to be sent to the IGENEX lab. It's going to be close to $600 but my health is worth much more than that, so its definitely something I must do.

I had some blood work done for heavy metal screening. Years ago I had very high aluminum 500+ so we wanted to redo that. I am down to 240. The doc also wanted to check my ESR and CRP, which both came back elevated. This was done a week after I had stomach surgery so it could have been elevated from that. We will be redoing this in mid June.

I had a sleep study done which revealed I have sleep apnea. I'm not overweight by any means.... I am only 135lbs, which for a man who is 5'7 is underweight. I stopped breathing on average 18 times an hour for up to 45 seconds long. This could be causing the fatigue I have been experiencing. However, I have been able to improve the fatigue and yawning throughout the day. This seemed to have improved when I started taking 600mg of Gabapentin along with 2.5mg of Melatonin. The Gabapentin is supposed to improve your REM sleep. I know sleep through the night whereas before I would wake up a few times in the night for no apparent reason.

I have also been able to rid myself of the anxiety and am now very relaxed... but still experiencing very much discomfort.

My muscle pain has been getting worse since I posted this message and is now my worst symptom. They feel like I have just been to the gym and gone through one hell of a work-out. Also, when I do any type of activity... even cutting the grass they feel 10x worse for weeks. They get very tired and weak. Even holding my arms up to the steering wheel when driving makes them exhausted. One other thing I noticed is crossing my legs is very, very painful. My muscles feel bruised and tender if I press on them. Does any of this sound like Fibromyalgia? I also noticed that my chest feels heavy, and I won't say that it's hard to breath but it seems like it takes more energy than normal.

Thanks again to everyone who responded... I hope to hear from you again.
Posted 5/17/2011 8:18 PM (GMT 0)
jr991 -

Thanks for the update. I am new to the site and as I read your original post I thought to myself "this could definitely be sleep apnea". Are you being treated with CPAP? I have used CPAP since 2003 and it made a world of difference for me. If you have side effects, be sure to work with the company who provides the machine and your doctor. There are lots of workarounds. I would give CPAP a month or two to work...the sleep deprivation caused by apnea can mimic all the symptoms of fibromyalgia.

The muscle pain you describe could be fibromyalgia or it could be from a number of other things. I think the recommendation you try to see a rheumatologist is a good one - they are the most experienced with musculoskeletal pain.
Posted 5/18/2011 12:05 AM (GMT 0)
I'm learning that sleep apnea can cause a lot more of the symptoms you are explaining than people realise. You certainly don't need to be over weight to have it. Getting that under control will probably help you a lot.

You do sound a lot like myself in many ways and I will also encourage you to get to a rheumatologist. I am waiting for my appointment, though I have to wait until August. I know the time will just fly, LOL

You mentioned getting tested in Canada, I can only hope that means you are a fellow Canadian ;)
Posted 5/7/2013 4:39 AM (GMT 0)
How are you feeling? I was diagnosed with fibromyalgia last summer. I've done several things to relieve my symptoms and feel sooooo much better...feel almost normal now...90% better i would say. email me and I'll tell you. I empathize with your suffering.
Posted 5/7/2013 1:31 PM (GMT 0)
Rose, just to let you know, this is an old thread from a few years ago. The original poster might no longer be around.

Start a new thread and introduce yourself!
Posted 5/7/2013 3:18 PM (GMT 0)
Sorry to hear about all that you're going through, jr. This is the place to be to get some advice and lots of support.

I've had fibro for many years and I have many of the symptoms that you list above. Since I am so very sensitive to medications I've learned to do all that I can naturally but I do admit by helping myself naturally, I have to be very careful not to overdo, to eat healthy as much as possible, to do gentle exercises and stretches religiously, to keep my stress to a minimum, and to take my regiment of supplements for my immune system and for sleeping. Though it doesn't always work.

I also have sleep apnea. I couldn't handle the CPAP machine that was recommended for me. I tried sleeping pills and they didn't do much for me except cause me side effects. I take the supplements melatonin and l-theanine, some tylenol, and benedryl to try to get a decent night's sleep.

Good luck to you.
Posted 8/3/2013 10:59 PM (GMT 0)
So sorry for everyone of us!!!! Can anyone also tell me about excaserbations! I have two in the last week....the pain is intolerable, it feels like the worse flu I ever had!!!!

A well meaning friend thought I'd feel better if I went to gyms pool and jacuzzi. By the time I got in her car to come home, there was pain shooting down both legs as if to sit was making it worse. When I got home I was hollering pain! Has anyone experienced an excaserbation to this degree?????


Thank you!

My empathy to All!!!!!
Posted 8/4/2013 5:31 AM (GMT 0)
Yes, I have, Femrot, many times....it's a very unpleasant part of Fibro. We need to listen to our bodies and not necessarily go along with what other people think we "should" be able to do. But it's hard, when they just don't get it and are so sure they know what's best for us.

I'm going to go ahead and lock this thread because it's quite old. If you want, you could start a new thread about exacerbations (also known as flares)...it's a subject most of us can relate to.

I hope you feel better soon!

Debbie
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