Feel Like I'm Dying

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.

Hi Georgiagirl, thanks for your response. Did you test positive for LD or were you diagnosed clinically? How long did you suffer with these symptoms before you were diagnosed, and did you have the visual symptoms too (floaters and after images)?

Thanks again.

Hi, I knew very early on that you indeed have Lyme disease and maybe some other tick co-infections too!!! I went undiagnosed for almost a year, had all the same symtoms. You need a good Lyme Dr. That will be the only way to get better. Infectious disease Dr's are not qualified. I have Lyme, bartanella and babesia. Look these up and you will find all of your symptoms. There are specific blood tests that must be done. Where do you live? You will get better, it will be a long and sometimes more painfull road to recovery. Look up the words Lyme Herx...that's what you want from Lyme meds. Its hard but you know it is helping.

Post Edited (Zoe123) : 4/17/2011 6:32:48 PM (GMT-6)

P.S. I contracted Lyme 45 years ago but was only diagnosed two years ago. Told docs for 45 years that I had Lyme, but NOOOOOO! "No, you don't test positive," blah blah blah.

Finally found the doc who knows a thing or two!

Regina

Hi jr991,

I am so sorry you are feeling so terrible. :( You described many of the symptoms I've been going through for about 8 months. Some of what you described sounds exactly like me. I haven't been diagnosed yet... the closest I've come is "possible Lupus." I have not yet had a Lyme test but I really need to. Could you do me a favor and describe your arm/leg symptoms a little more? The reason I ask is because you're the first person who's described almost exactly how my legs feel. I have an achy, heavy, "restless legs syndrome" feeling but not quite. I get it in my arms too, quite badly, almost like my shoulders are being pushed back. Could you possibly describe the feeling in your arms and legs a little more... maybe we have the same symptom! That would be me feel a lot less crazy =)

I have similar symptoms, been told I have MONO, Epstien Barr Virus, check the Lyme route and be deligent as most Physicians have no experience with Lyme, listen to these folks find a good LLMD.

Some things that hevae been helping me, Sublingual B-12 helps with energy level, St Johns Wort will help with the brain fog and anxiety, Astralagus helps with MONO.  Drink Tons of water try to work out lightly, the sauna has helped me also but take it easy as 120 degree steam can make it hard to breath so start with 5 min work up to 10-15.

GET WELL! 

Hey, jr

LYME LYME LYME. that trip to the woods is the big give away.

for me it took over 20yrs to find out and i grew up on Long Island.
only went on camping trips for family vacations and Fire Island.

some things that helped me more than anything in terms of treatment
were Ivermectin for parasites. and Heparin for thick blood.

you may not have thick blood but insist on an ISAC panel
and if you really want to know for sure about parasites
het the stool test from metagenix (or is it metametrix?) google it.
it cost about $300. my naturopath wouldn't trust any other ordinary insurance covered stool test. If I hadn't listened to her I would still be beyond repair.

Not everyone looks for the parasites and it is so common. I believe all the ticks have parasites and after all these years they are doing a number on heart. CNS and gastro. spend the money to find out. its a great test and will tell you if you have candida for pancreatic insufficiency and tons ofother stuff.

good luck.
I have been going to chronic fatigue to see what you guys are doing over her for the fatigue and I keep running into these lyme threads. I gotta get back over to the lyme thread...see you over there too

Definately Fibromyalgia symptoms there as well.

Hi wide_eyes, I don't have any updates... things haven't gotten any better and continue to progress. The antibiotics didn't make me feel worse, they actually made me feel slightly better. Some people have told me that 200mg a day wasn't high enough dosage but thats all the doctor would give me.

I've been on the lyme forums for quite some time, I tested negative on both the ELISA and through Igenex. I'm hoping that soon there will be more definitive testing.

As far as I'm concerned, this is the only Lyme test that is worth a darn. They culture for Lyme for up to four months. They send the test results after two, but they continue to culture it for their own testing quality assurance My doctor's office said they were contacted after three months with a positive result for a patient who showed negative for two months.

Advanced Lab
501 Elmwood Avenue
Sharon Hill, PA 19079

www.advanced-lab.com

[email protected]

I don't want to rain on the party, but Lyme has become a catch all just as Fibromyalgia has been. Treating with antibiotics has its own risk. Antibiotics are not candy to be gobbled up indiscriminately. Side effects including long term damage is a real possibility. I took 2 doses of Flagyl and developed neurological damage, which took months to resolve. Thankfully I stopped it after 2 doses even though my LLMD encouraged me to continue. Some people who have continued have had permanent irreversible nerve damage and are in worse shape now than before they started tretment.

Further most people with immune illness (CFIDS) find they are chemically sensitive and/or suddenly have developed new and more serious allergies. One dose of Bactrim (sulfa) and I was miserable for 24 hours. It burned my stomach basically.

I would advise caution in buying the Lyme diagnosis. Having a positive Band 41 alone is not indicative of Lyme.

Many viruses can lie dormant or years and then reactivate, perhaps at a stressful time (or in the case of women, during hormonal changes). Some viruses hit and run, leaving the damage behind. This would make it hard to identify the culprit.

I truly understand how you feel. I felt that way for many years. I've been out and out sick for the past 15 years, but I had symptoms that would try to surface for about 14 years before that. Mine began with a 10-day stomach bug. That started the severe digestive issues. After a couple years the digestive stuff gradually resolved but I was never the same. Fatigue and an occasional migraine were the only early signs until I acquired another 10 day stint of stomach flu (?) and lost 10 pounds in 10 days. Whatever that bug was, it next moved into my leg muscles as I had intermittent spasms. It began to effect my sleep.
Still, I was able to partially recover. I went out to Colorado to chaperone a youth event and didn't sleep for 10 days. I came back nearly dead and slept on and off for about 3 weeks. Then I crashed.

The gastro stuff started with a vengeance. Cognitive very bad, mixing up words, in a lot of pain. I didn't know it then and not for a few years after, all the while dealing with pain and poor sleep, but I had lost my ability to digest gluten and am gluten intolerant to this day. The "IBS" diagnosis was really gluten sensitivity. Later I found baker's and brewer's yeasts to be a problem.

Symptoms accumulated, too many to list. The straw that broke the camel's back was when one day loud tinnitus suddenly began. That was 5 years ago and it has never stopped. Hearing loss came with it. The hearing gets worse when other symptoms are worse, it fluctuates. And I get periodic deep stabbing pain in the ears, which I presume is related to muscles or nerves.

Like you I have acquired intractable insomnia. I used to sleep like the dead before I got sick. Now I'm lucky to sleep at all. Without any meds, my sleep is light with frequent awakenings and I stop breathing and go through periods of jerking awake or gasping for breath. I am not overweight, and I do not snore. Everything I have read points toward a central problem where there is a delay in the brain telling the body to breathe.

This is long so I'll quit. The only advice I have is to take a known viral suppressant like a good Olive Leaf extract and keep doing what you need to for sleep. Eat a good diet and flush out any food sensitivities. Get some fresh air as often as possible and a little sun as tolerated. Last but not least, attend to your spiritual need. Forgive any offenses, seek forgiveness for any wrongs you have committed. Make peace with God if you have not already done so. These things have helped me the most.

I still wait and pray for the unravelling of this complex disorder and I pray for healing. The human body is so complex, science will never understand it all.

I would highly reccomend that you do some research on Celiacs. I was pleased to see that Marrit had mentioned issues with food sensitivies. When I read your symptoms WITH the digestive issues that is what I initially thought of. You can be tested by blood test as long as you are not already on a gluten free diet, there is also a saliva test. I would talk to your doctor about this possibility right away. People with Celiacs are often mis-diagnosed for years.

Take care of yourself.

Someone may have already mentioned this but it sounds a lot like Fibromyalgia to me.

Feeling spaced out - "Fibro Fog"
concentration, - Very common. in Fibromyalgia (FMS)
fatigue - Oh my goodness yes. I have to sit down and lay my head down on the kitchen table sometimes just to cook dinner.
stomach stuff - IBS is a very common thing in Fibromyalgia
nasal - I have suffered sinus problems for many years. Pretty chronic. Goes along with Multiple Chemical Sensitivities, also part of Fibro
dizzy - May have to do with sinusitis/ears
floaters - Yes
tinnitis - I have this - a very high pitched noise and I have had my hearing checked at an ENT and been tested for auditory tumor (negative on the tumor, thank goodness)
after images - Not so much personally but I have seen it on the Fibromyalgia forum here on Healing Well before.
jaw pain etc - TMJ is very common along with Fibromyalgia. I think because the TMJ is Temperomandibular Joint, and there's muscle there.
muscle twitching - I get this, worst for me at bedtime, it's like my body is turning itself off for the night. Sometimes there are odd sensations like that of hot liquid on my leg.
headaches - very common in Fibromyalgia.
Sleep apnea - I have this too. I had to argue with my doctor to be tested for it. She said I didn't fit the profile of someone who would have sleep apnea (ie I don't have a fat neck or whatever) but I held my ground and voila I do have sleep apnea. It is very common in Fibromyalgia.

See what your doctor says about this. I see a Rheumatologist. Also please join us on the Fibromyalgia forum, you'll be very welcome and you'll see your'e not alone. What has helped me a lot is to think of it as "WORKING THROUGH" Fibromyalgia instead of battling it. Like you, I was certain I had cancer or something they were missing. It is like the flu from hell that never goes away.

Post Edited (applevenus) : 5/15/2012 10:18:05 AM (GMT-6)