Feel Like I'm Dying

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Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 4/12/2011 9:04 AM (GMT -6)   
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.

Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 4/12/2011 11:38 AM (GMT -6)   
Hi ,I also have had all of the symptoms that you are describing. I was finally diagnosed with Lyme Disease....

Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 4/12/2011 1:53 PM (GMT -6)   
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.

New Member

Date Joined Apr 2011
Total Posts : 1
   Posted 4/16/2011 12:49 AM (GMT -6)   
Hi Jr991,

I just signed up so I could relpy to you. :)
I know how you feel, I really do. It is the same way I have been feeling for over 5 years. The yawning you mentioned went away when I got on low thyroid medicine. I have had CFS/Fibro for almost 20 years. I was able to have some good days but I also had my bad days. Pain, fatigue, all of it. BUT six years ago things changed, to the worse. Long story short I became home/bed bound, no life at all and on strong pain meds. Looking back six years ago I was bitten by a tick, got the bulls-eye rash went to the doctor. The doctor said no Lyme in TN and if I had Lyme I would have high fevers. Went home and life went on so I thought. As I said I went down hill. The times I conected it to the tick bite the doctors would jump on no it is CFS/Fibro. I began searching Lupus, have had some ANA positive and the other test that lead there but still they say Fibro/CFS. Well I have been doing a lot of research on XMRV and CFS. They are running into a lot of people who are positive are also positive in Lyme. So I research Lyme. I learn that the bulls eye rash means you have Lyme! I also learn you need a Lyme doc, someone that works with Lyme. Over the years I talked a few doctors into a Lyme test, they all came back, negt. Well I was convienced that with the bulls eye rash I needed treatment so I found a doctor. Went to see him. He ran some test for me and Boom!!! L.Y.M.E!!!! You need the right doctor, the right test and the right LAB! Then you may find out that you too have Lyme. If not, it looks like you have CFS/Fibro and or maybe Lupus. One day we may find out that its all the same illness. I don't know, I do know that I have two illnesses if not more. CFS/Fibro/Lupus and six years ago Lyme. It has done all kinds of things to me. That is when I became Hypo, chest pains, shortness of breath and that yawning! Which I think was from lack of oxgen getting to the brain. Maybe the blood flow issues that is proven now in CFS. I have so much to learn. And with this illness you have to take your life in your own hands and use the doctors as tools. I have been just fine with getting cancer or heart failure, I am not depressed I am sick. Sick and sick of being sick. But I hang in there and hit the computer and do what I can when I can. You will learn more from others like yourself than you ever will at a doctors office. Check that Lyme thing out, coming from camping. just sounds like your in the same boat as I am.

IGeneX Lab
Initial Lyme panels $410.00 Do what you have to do to get the money. A few years ago I would not have paid that much but knowing what I went through and what I would contine to go through I would pay much more, some way. At least then if it comes back negitive you will feel more comfortable putting your efforts towards CFS or the other illnesses. XMRV has gotten CFS in the news again. Which BTW I have not got my test results back Almost $500 for those test. I have spent all these years doing like the doctors have told me, there is nothing I can do. Anti depresant, pain meds, Lyrica etc. No help! I got to where I stop going unless it was to the ER which was also a waste of time but I didn't want to die. Right??? Hang in there, please get tested. The test the docs will give you are no good!
Its late for me I hope I have not confused you.

New Member

Date Joined Apr 2011
Total Posts : 1
   Posted 4/17/2011 4:33 PM (GMT -6)   
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)

New Member

Date Joined Apr 2011
Total Posts : 3
   Posted 4/17/2011 11:37 PM (GMT -6)   
jr991 said...
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.

Sounds like Lyme but I'm not an MD. I'm new to the forum; is it OK to post doctors' names? I have just the place for you; please let me know, group.



New Member

Date Joined Apr 2011
Total Posts : 3
   Posted 4/17/2011 11:40 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!


New Member

Date Joined Mar 2011
Total Posts : 11
   Posted 4/19/2011 7:53 PM (GMT -6)   
cry  Hi, I'm so sry for all of yer suffering, I too have had many symptoms u have explained, I have been diagnosed with fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, arthritis in my neck and joints, 2 bulge discs in my neck, facet syndrome in my neck, severe migraine/tension headaches, sinusitis, irritable bowel syndrome, acid reflux oh, also scoliosis that went untreated which i think is the reason for all my health issues. I have also had bilateral carpal tunnel surgery. I have been to so many doctors that i cant remember them all. I would suggest going to a rhuematologist and getting checked for CFS, and any other tests they wanna do, also do not hesistate to go see a pain management doctor, they should be able to pinpoint what is wrong with u. Be patient with doctors, if they don't know what is wrong seek out another. I've seen many doctors that didn't know what was wrong with me for so many yrs. they kept saying people with scoliosis don't have pain. i just didn't giv up and kept going to more orthopedic docs and specialists until finally they found out what i had wrong with me. All I have described can be summed up shortly by saying i have a nuero musculo skeletal disease. I hope keep looking and find a doc to help u, don't giv up. I used to feel like death when my migraines controlled my life. It took many yrs to help with my depression and help prevent my  migraines from being so severe. I also get injections, epidurals in my neck and have had my nerves burned in my neck 3 different times within several yrs.
with CFS flu symptoms, sinusitis,  ear infections, headaches, muscle aches, extreme fatigue, foggy ness, these are all common, plus it makes it hard for u to function normal, your immune system is week, even the sun makes me over heated. some of your symptoms also sound like your blood pressure is high at times and maybe your sugar is low. good luck

New Member

Date Joined Jan 2011
Total Posts : 14
   Posted 4/25/2011 7:50 PM (GMT -6)   
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 =)
Lyrica, Plaquenil, Prednisone, Prilosec, Propranolol (just started)
My doctors like the letter P.

If you aren't in over your head, how do you know how tall you are?
T.S. Eliot

What doesn't kill you makes you funnier.

Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 5/17/2011 8:10 AM (GMT -6)   
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 CFS or Fibromyalgia?

Thanks again to everyone who responded... I hope to hear from you again.

New Member

Date Joined Jul 2011
Total Posts : 6
   Posted 7/8/2011 9:05 PM (GMT -6)   
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.

Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 7/23/2011 10:58 PM (GMT -6)   
I can't believe how many people have responded suspecting a possible Lyme infection. I had a feeling that it could be Lymes disease and I ended up doing the blood test through Igenex however it came back negative with only band 41 showing an Indeterminate result. I just started a 3 week trial of antibiotics to see if I notice any improvement.

I have gone so many years with weird symptoms I am almost expecting to never find out what's wrong with me. I just wanted to provide an update on the Lymes test.

Veteran Member

Date Joined May 2006
Total Posts : 1477
   Posted 8/4/2011 9:10 PM (GMT -6)   
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

Regular Member

Date Joined Dec 2007
Total Posts : 67
   Posted 8/14/2011 11:24 PM (GMT -6)   
Hello, besides ear/eye/jaw pain I have almost everything what you have. I have anxiety disorder, have you ever checked on that one? Feeling tired, off-balanced, dizzy, yawning (hyperventilation syndrome which often comes with anxiety, the more you yawn the more you want, google it how to do relaxation techniques, finally I got rid of it), pain on top of the head, unable to concentrate, feeling of unreality... all are typical anxiety symptoms. Unless I have Lime too :-) Jokes apart, check with psychotherapist as well. You sound very much like me at my bad anxiety time. Good luck, hope you will find your answer.

New Member

Date Joined Aug 2011
Total Posts : 6
   Posted 8/16/2011 7:13 AM (GMT -6)   
Definately Fibromyalgia symptoms there as well.

New Member

Date Joined Aug 2011
Total Posts : 8
   Posted 8/28/2011 12:56 PM (GMT -6)   
hey jr991, any updates? The thing you should be looking for when taking the antibiotics is if they make you WORSE, then it is lyme. Its called a herxheimer reaction when you are killing the bacteria they release toxins and you feel slightly worse. I know when i first started treating everytime i would take my antibiotics i would feel dizzy and unable to concentrate for about 2 hours after taking them. I also think that many people choose to treat if they have ANY positive bands, and most will improve. The testing is all around bunk, lyme should be a clinical diagnosis based on symptoms. I hope you don't rule out lyme too soon, keep an eye on your symptoms and check out lyme forums to find a symptom list! good luck to you!

Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 8/28/2011 1:23 PM (GMT -6)   
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.

New Member

Date Joined Aug 2011
Total Posts : 8
   Posted 8/28/2011 7:44 PM (GMT -6)   
Hey jr991, thanks for the update, sorry your tests weren't conclusive, were there any positive bands? Some people treat for lyme even if they only have one or two specific bands....i think 41 and 32-33 are indicative but dont quote me. All i can tell you is my own personal experience, i was tested negative ELISA by a primary care...but i already had an appointment with an llmd. She clinically diagnosed me with lyme based on symptoms and i have treated with combo antibiotics for almost 5 months and my symptoms have resolved about 50% and somedays i feel great. I would take your improvement on antibiotics as a very encouraging sign that your on the right track. Take care

New Member

Date Joined Mar 2012
Total Posts : 5
   Posted 3/6/2012 3:31 PM (GMT -6)   
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



Regular Member

Date Joined Mar 2012
Total Posts : 22
   Posted 3/6/2012 7:28 PM (GMT -6)   
I was going to say, as someone else suggested, see a rheumatologist. If he/she does not listen, keep hunting for a doctor that will listen to you. I have a great rheumatologist, a sweet 63 year old gentleman.
Don't give up, it looks like you are right up there on the possible Lyme list.
Good luck!!
Moky yeah

Regular Member

Date Joined Jan 2012
Total Posts : 146
   Posted 3/16/2012 8:32 AM (GMT -6)   
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.

New Member

Date Joined Apr 2012
Total Posts : 1
   Posted 4/1/2012 10:48 AM (GMT -6)   
Hello I understand and feel ur pain. I have almost the exact same problem. I have one question and plz don't take the wrong way but was there ever any drug use mainly cocaine done?

New Member

Date Joined Apr 2012
Total Posts : 1
   Posted 4/30/2012 11:41 AM (GMT -6)   
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.

Regular Member

Date Joined May 2012
Total Posts : 22
   Posted 5/4/2012 3:41 PM (GMT -6)   
You`re alive and you need continued support. It is challenging to navigate the medical system when you are ill. I know that well. Remember to seek out support because that is precisely what you need when you can`t figure it out. The support to keep going and being strong as you have been. Sometimes that is the difference between staying strong and giving up. You clearly have a lot of support here and hope you do equally in life.
You are clearly very strong; remember that.

Veteran Member

Date Joined Aug 2011
Total Posts : 934
   Posted 5/15/2012 11:15 AM (GMT -6)   
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)

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