Feel Like I'm Dying

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MyBarbara
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/16/2013 11:55 AM (GMT -7)   
I can completely relate to what you are suffering with... it is the same with me (right down to your every symptom). I have been struggling for over 20 years now... only to have doctors repeatedly tell me that nothing is wrong. But I wonder if nothing could make me feel as if I'm dying all the time? It's very hard to enjoy life feeling this way. I can't give any advise as to what it is we may have... I just wanted to let you know that you are very well understood.

alsky
Regular Member


Date Joined Oct 2013
Total Posts : 42
   Posted 10/17/2013 9:34 AM (GMT -7)   
Evening primrose oil helps many people with CFS. Give it a try. I have been taking it since 1988. It helps a lot !!!!!!

Angelfulofhope
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/3/2013 11:45 AM (GMT -7)   
You described everything I am going through :
Symptoms came on gradually two months ago around sept 2013
Past week and a half nov.22 symptoms are worse and wont seem to lift
Or go away very frustrating and scary
Several trips to the ER because I feel so week and physical empty inside like I'm wasting away.
Brain fog / feeling drunk 24/7
Bed ridden except to eat drink go pee shower few days a week
Can no longer trust myself to drive
Completely dependent on others .
Difficulty concentrating/memory horrible cognitive impairment
Extreme fatigue
Sensitive to light
Personality change .not creative lost of interest barley able to socialize
Depression
Crying easily symptoms get overwhelming
Feeling like a shadow of former self
Anxiety
Feeling "hollow" inside
Insomnia
Can't handle life's stressors
Easily overwhelmed
Isolation
Feeling no joy
Stuck in a dream world
Waking up in the night drenched in a cold sweat
Waking up with heart palpitations

memory and learning issues, short gaps in time, clumsy speech, loss of creativity and problem solving skills, forgetfulness, depression, and general confusion among other brain fog symptoms.

Every test I have taken came back normal or negative
.i know there is something wrong but no drs. Seem to be able to help. I feel so scared like its getting worse day by day.
What helps and what doesn't ?
Any help would be appreciated thank u

AnnaBananna
Veteran Member


Date Joined Jun 2013
Total Posts : 789
   Posted 12/8/2013 10:49 AM (GMT -7)   
This has been a really informative thread. I have a fibro dx and its nice to read up on Lyme and the other possible conditions. Thank you all for posting!

laineyk
Regular Member


Date Joined Sep 2013
Total Posts : 233
   Posted 12/10/2013 3:22 PM (GMT -7)   
angel...my gosh that's me that you described. I had H=pylori this past spring, was treated then had Small intestinal bacteria overgrowth, treated for that..continued to get sicker and sicker.

been retested for both and I am eradicated from that.

saw a RA and was told I have Fibro. GI said I now have IBS

my anxiety is really not being controlled with meds and I EVER SINGLE DAY have gut issues and feel washed out...no stamina at all, I hate going into stores now because it seems like I can not see well in the lighting there. Had my eyes checked several xs.

I keep telling my hubby there is something else wrong with me. Haven't been able to work in a year due to all this.

Thinking I may have chronic fatigue too???
I was tested for Lupus by RA and that was negative, don't know if they tested for Lyme but if they did then that was negative too.

Just feel like I am dieing.....oh HP and SIBO ruins your gut for a very long time, lost 50lbs
Married, three grown children and two grandchildren/ Christian
Anxiety/depression with a little OCD in the mix/ Fibromyalgia dx Sept 2013, after having two severe stomach infections/ dry eye/ menopausal...shall I go on?

Meds: Zoloft 50mg, weaning off slowly, no longer works
Clonazepam .5 mg BID
Motrin when pain is 7-10

CHF52
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/21/2013 9:02 AM (GMT -7)   
I am sorry you feel so miserable. My CfS started when I came back froma trip to Africa. It felt like I had jetlag only it never went away. Besides the fatigue I suffer from body aches, a distant thunder or fluttering sound in my ear and insomnia. The wirst was the body movements that would occur just as I was fallibg asleep. This would happen over and over like 60 times before I went to sleep. I thought I was having some kind of seizures. After going to several neurologists who diagnosed me with a movement disorder. He says some fibro and CFS people have more neurological symptoms. I am. currently taking Mirapex (off-label) and Zanaflex. I have my life back. Although I am not cured, I certainly am greatly improved. I hope you are able to try these meds out to see if you get relief.

zachsmom
Regular Member


Date Joined Dec 2013
Total Posts : 24
   Posted 12/26/2013 2:41 PM (GMT -7)   
My son had POTS - developed within a couple months after being under treated for a tick bite with one 200mg doxycycline pill. He tested negative for Lyme on both the ELISA and Western Blot. Then he had additional tests done after being on minocycline, bactrim and plaquenil for a month, for the following prices, paid up front, out of pocket, at Labcorp, and STILL tested NEGATIVE:
CBC.....19.00
CMP 14.....27.40
HS-CRP.....32.00
VIT D.....85.00
WESTERN BLOT.....175.00
BABESIA.....294.00
EHRLICHIA.....648.00
BARTONELLA.....260.00
C4A (857334).....216.00
CD-57 (505026).....143.00
C6 PEPTIDE (010108).....53.00
COXSACKIE ANTIBODY.....304.00
CHLAMYDIA PNEUMONIA Ab.....251.00
MYCOPLASMA ANTIBODY.....236.00
ANAPLASMOSIS-ANAPLASMA PHAGOCYTOPHILUM.

Though my son tested negative, he was obviously infected by *something*, as evidenced by how favorably he has responded to treatment. POTS symptoms almost totally resolved within 27 days of taking abx. No more tachycardia! Driving again! No longer BED-RIDDEN!!!He has another month to go on abx, hoping this will clear up his shortness of breath that remains thus far.
Son under-treated for tick bite April 15, 2013
Severe Panic Attack mid-July 2013
Full-blown Postural Orthostatic Tachycardia Syndrome (POTS) by Oct 8, 2013
Finally see LLMD on Nov 15, 2013
POTS symptoms mostly resolved by Dec 20, 2013
Still dealing with shortness of breath

Salafrance
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/10/2014 5:46 PM (GMT -7)   
Marrit said...
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.

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.

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.


Hi,

I appreciate the clarity of your thinking on this issue. I was struck by the list of symptoms you and other people gave, as I came down with CFS in my early thirties, nearly twenty years ago, and my own symptoms matched, blow for blow. I was working on a software contract in Worthing, in the South of England and I contracted a severe flu-like illness. Prior to this, I'd been in fairly good shape - I'd always been quite athletic, I walked and cycled everywhere, *swam*, visited the gym a couple of times a week.

I never really recovered from the aforesaid illness. It took me six months to get to a point where I could walk for more than a few minutes or so at a time. I did the laundry by crawling around on the floor, trailing a laundry basket.

My symptoms were:

Problems maintaining body temperature - I'd be freezing on hot, hot summer days and at other times hugely overheated.

Sleep. Like you, I slept like the dead prior to the illness. With it, I would 'sleep' in a weird kind of semi-consciousness. I'd wake in panic several times a night because I'd have stopped breathing. The slightest thing would cause me to wake. Sleep never satisfied.

My eyesight developed floaters. This had never been a factor before - in general, I'd always been in excellent health.

I stopped being able to tolerate milk for several years.

Exercise had an invisible threshold. I could tolerate very minimal amounts as my health very gradually improved, but if I stepped over the intensity threshold, I'd feel as though I'd been poisoned, with a delays of several hours to a couple of days. This was a terrible issue for me as I'm a clinical depressive and I'd used exercise as part of my coping strategies. I grew fat, and sickly looking. At my worst I looked pretty hideous. My partner eventually dumped me for a much younger woman.

Cognitively, I was damaged. I had problems with word order when speaking. I could no longer multi-task, particularly when engaging in conversation. If someone interrupted me, I'd lose track of what I'd been saying.

I'd have fade-outs, wherein I'd be more or less functional and then I'd hit a wave of fatigue and have to stop whatever I was trying to do and try to rest instead. It was hard, for years, to undertake long car journeys for this reason.

It was particularly hard as my friends thought for a long while that I was faking it. The only doctor I've ever met who believed it to be a genuine, physical problem was himself a sufferer. I don't know whether the situation's improved in the twenty years or so since I contracted it, but at the time it was being characterised by the idiot press as 'yuppie flu'. The British psychiatric community enacted a master-stroke of empire-building by classifying it as a psychiatric condition and effectively biasing and debasing research efforts for at least a decade (I stopped following the research after a while, out of sheer despair).

I'm left with the feeling that it basically destroyed my life, couple with a vast amount of anger at the medical profession for its lack of any real empathy, its cretinous approach to diagnosis (like debugging software with a ouija board) and its general inability to admit that there are things that it doesn't understand, yet.

While I'm a lot more functional than I used to be when I first had the illness, I don't think I've ever been free of it. I now have some long-term immune problems. My eyes are each growing a terygeum. I have urticaria, seemingly a reaction to one of my depression medications. I still have flake-outs.

I'm disappointed, but not surprised, that the medical establishment still hasn't been able to find its collective arse with both hands.

Peace to you all.

Randy_H
Regular Member


Date Joined Jan 2014
Total Posts : 39
   Posted 3/11/2014 8:06 PM (GMT -7)   
Yes, having been from doctor to doctor for months to see if I was suffering from this or that condition, my family internal Med. guy finally told me that he had ruled everything out............except CFS/Fibro. The US CDC has recognized this disease so I don't understand why so many doctors don't.

I don't really blame the medical establishment too much though. There is currently no test for this disease, as you know it is a diagnosis by exclusion. Secondly, there is no universally agree upon theories about it's cause. Given those two facts, doctors are at a loss. What other disease is like ours? Just about nothing.

My family doctor would not officially diagnose we with the condition however because he said there would be no upside for me. It makes getting any kind of insurance impossible. Plus, "there is no effective treatment". That last sentence I now strongly disagree with, being 90% better. (You can read why under " Actual Treatment for CFS/Fibro? Yes")

Weatherman612
New Member


Date Joined Mar 2014
Total Posts : 4
   Posted 3/21/2014 1:35 PM (GMT -7)   
Although I don't have all of your symptoms, I have a good number of them and have had since 2003.  Mine started after being on antibiotics for 9 months for a skin conditions, 3 days after I stopped in late December of 2002 I developed muscle twitching (widespread) weakness in legs and arms, back and leg pain, nausea, electric shock sensations and malaise.  Over the years, I've been on various medications to control my pain and symptoms but have never gotten any answers aside from a psychiatric diagnosis, which does more to hinder the healing process than anything.  I was 100 percent healthy before this hit, walking 6 miles a day, 170 pounds, lifted weights, worked 50 hours a week. 
 
Now, I'm 43 years old, have 200 dollars to my name, I'm on Medicaid, can't work more than 15 hours a week and have added chronic light headedness and stomach problems to my list of symptoms.  In short, I feel your pain my friend, many times I felt like I would simply not wake up the next day or like I have only months to live. 
 
Sounds like you've gotten some good advice here, I've tested negative for Lyme a few times but I would definitely pursue that, based on your story.

ron4ron5
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/13/2014 7:37 PM (GMT -7)   
You all need to check your records and see if you have ever taken a floroquinolone antibiotic...levaquin cipro etc....it causing these problems

eradicator
New Member


Date Joined Apr 2014
Total Posts : 8
   Posted 4/17/2014 7:36 PM (GMT -7)   
I signed up so I can respond to you. I have been battling very similar issues for the last five years. After numerous tests, 5 yrs of PT, 44 cortisone injections, pain meds, etc, I did not have any improvement.
I was finally diagnosed with reflex sympathetic dystrophy (RSD - no cure), chronic regional pain syndrome (CRPS - no cure), joint hypermobility syndrome (JHS - no cure), Fibromyalgia, osteoarthritis, bursitis, neck issues, bulging disks, calcium deposits, cysts, TMJ, recurrent sinus infections and a host of other issues. All these issues are somewhat related. However, JHS is a type of Ehlers Danlos disease that is hereditary and it causes wide spread chronic pain, muscle spasms due to the breakdown of the collagen in the tendons, ligaments and sometimes the internal organs (no cure). Genetic testing is needed to pinpoint the type of this hereditary disease, but you could start with your family history. In my case, I had to beat it out of my parents, because they were too proud to admit that they had health issues and held it as a highly guarded secret. I attached two websites for your reference. I hope that you get a concrete diagnosis soon.

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
http://www.rsdlaughter.com/smf/index.php?topic=261.0

Ajsteele
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/21/2014 3:55 PM (GMT -7)   
Hi I couldn't help but post, I haven't read all the replies so sorry if anyone's said this before, but I find if you find a focus in life before it truly gets a hold of you then you've cracked it, don't lose sight of your goals....I myself have suffered two "near death" experiences this last week due to stress a lack of sleep and a chest infection......the second episode really scared me n I really thought I was going to die it was the thought of not seeing my children grow up that did it for me... But if your children are already grown up or you haven't got any for whatever reason try n finding yourself a goal a good hobby to keep your brain alive and healthy, exercise for your heart n eat healthy food, that should keep you on your toes, when your chips are down, staying alive n fit n healthy is a good task as its a challenge to most, try new foods if you already eat well, explore new places, I find this helps a lot, forget the tablets these are mere sedatives to keep you in a stable frame of mind and probably will do your health more bad than good in the long run, if you have a strong mind and a desire to live you'll most definitely go far, without that, your mind will shut down, my goals are to watch my kids grow up and get fit n healthy to keep myself as young as I can, give yourself a new challenge either every day or every week and keep going til you find a good interest or goal I really hope this helps someone or anyone out there suffering n I'm sending lots of love and support out there to all you sufferers I know it's not nice and trust me you're not alone, I'm not going to disclose my age because I am relatively young but I know this has happened to me I've been one of you but I'm not going to give in to this "illness" keep telling yourself it's just a state of mind and it will pass...I wish you all the best of luck with this and if any of you take something from this then I've done my job in helping someone....I really hope it does xxxx

Ajsteele
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/21/2014 4:02 PM (GMT -7)   
Sorry my response is to the people that have the mental not physical symptoms sorry....

AlexDAK
New Member


Date Joined May 2014
Total Posts : 4
   Posted 5/18/2014 1:47 AM (GMT -7)   
Hi. My sysmptoms are very similar:

1. Chronic fatigue (most mental)
2. Brain fog, derealization
3. Anxiety
4. IBS-D
5. Light, sound sensitivity
6. Afterimages, visual snow
7. Constant ringing in ears
8. Cold hands
9. Gas, bloating
10. Hair loss
11. Weight loss
12. Feeling my heart beat in my head
13. Cracking joints
14. Many others, that are gone
I had them for 5 years. I am better now, but still far from feeling as my old self.

I think, it can be:
1. Anxiety
2. Celiac
3. Lyme
4. CFS
5. Something else

I had many tests done, but they are all negative. MDs say it's just anxiety, but I can't believe in it.

kdavis308
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/18/2014 6:47 PM (GMT -7)   
I was searching for something else and came across this post. I have to tell you the very first thing that popped into my head was a parasite. American physicians are not very tuned into this diagnosis as it is not as common here as in other parts of the world. I wish you would have posted labs. A parasite will cause all of your symptoms and elevate your CRP & ESR as stated in the thread.

Your physician can check for this and this is very treatable.

Chotti
Veteran Member


Date Joined Oct 2013
Total Posts : 500
   Posted 5/19/2014 9:59 AM (GMT -7)   
Hello ,
Symptom CHECK...see vedio...

The you tube video goes over a lot of Fibro info. and talks about important supplements and why blood tests are not always right. Gives details why we fee the way we do.

I thought this info might be helpful ....the resources are useful not only in treating CFS/FM but also pain, insomnia, allergies, sinusitis, many others. Dr. Jacob Teitelbaum himself had been diagnosed CFS/FM in 1975. He knows all to well the games doctors play to convince us that all the pain we feel in in our heads. He proved thru studies that CSF/FM is real and treatable.

Dr. Jacob Teitelbaum M.D. at the 2013 ABHIM discusses his double-blind study results with 91% effectiveness in treating CFS/FM using the SHINE protocol:

https://www.youtube.com/watch?v=KuIRDzUDO3o#t=352
"As long as there is breath there is hope, LIFE is a GIFT. "

Fish Biscuit
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/30/2014 11:15 PM (GMT -7)   
To Lisa and the person you responded to and anyone else here who is suffering.
Please check our Dr. Richard Schulze and his book online: "There Are No
Incurable Diseases"
He is in his 60's and had a clinic where he got people well for about 30 years. People by the thousands literally with "incurable" diseases were almost all healed.
This included cancer patients.

Dr. Schulze was told at age 16 by 4 doctors that he needed heart surgery or he wouldn't live to see age 20. He opted out and began studying herbs, nutrition, etc. and healed himself. THEN he went to school and learned all about herbs and shared what he knew with others, getting them healed.

My mom was told by the medical profession (4 doctors) that she needed three organs removed when she had a bowel obstruction. My dad told her not to have the surgeries but to go to a health clinic that he recommended. Ironically run by a medical doctor (who got tired of not healing patients with drugs and decided to open a clinic). She was placed on a fast and other protocols and the obstruction was removed in two weeks and she never did need those organs removed.

Bottom line folks, is we ALL have to TAKE responsibility for our own health and do our own research.

Most medical doctors only study drugs and surgery. Very little on nutrition or herbs is taught. (Probably nothing on herbs)
Only one or two classes are dedicated to nutrition.

I recently stopped antibiotics and transferred to garlic. Garlic kills bad bacteria but leaves the good bacteria alone, plus it has other healing properties and boosts the immune system. Antibiotics do one thing. And even that isn't done well.
I like what one commenter said about this drug.
Quote:
"Antibiotics are like a policeman with an FDA frame of mind who enters a bank during a robbery. To make sure he gets all the robbers, he just shoots and kills everyone in the bank"
Great analogy! Antibiotics kill all the good bacteria along with the bad. Garlic does not AND GARLIC WON'T GENERATE SUPER BUGS only antibiotics have the capability of doing that.

That about sums it up.
We all need to stop trusting in medical doctors and find doctors who studied nutrition and herbs and who are interested in getting people well, as well as taking upon ourselves to DO OUR OWN RESEARCH. With the internet, the library is at our finger tips.

God Bless All of you and I Sincerely Hope and Pray for all of you to RECOVER and get well!
Erika:)

Ericamy
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/14/2015 4:09 PM (GMT -7)   
Hi there. I have been experiencing some of the same symptoms for some time now. It started when I returned from a weekend that we stayed on our boat. Little sleep, many cocktails, etc. and it wasn't the regular rocking feeling. I have the foggy/dazed feeling all the time. Can't concentrate and excessively tired I believe from trying to focus during the day. Have you found out what has been causing your symptoms?

Gmoore16
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/19/2015 2:20 PM (GMT -7)   
Hi, im Georgia. I have been experiencing the same thing for the past 3 years and im only 16. I am taking alot of time off school which worries me.

I always feel tired. And sometimes so tired i dont even want to move any muscle...like.. at all...nothing. i just lie there. Its horrible.

My nausea started after i was sent to the hospital with scarlet fever. A few weeks later i started feeling like i wanted to throw up 24/7

The doctors dont know whats wrong with me and i fear they never will. I have been through EVERY test you could ever think of and im over it. Im over not knowing why i dont want to eat or why i cant move. Any advice you have on how to cope with it or make things better would really help alot
Thanks,
Georgia

Hoshie
Regular Member


Date Joined Mar 2015
Total Posts : 55
   Posted 3/31/2015 4:49 PM (GMT -7)   
My story:

about 15 years ago while living in Japan I passed out in a field. When I awoke I realized that something had bit my hand (some believe it was a brown recluse spider). My hand became about the size of a softball and shortly thereafter, I developed neurological symptoms. I got better for a period of time and then regressed.

At present I have:
Constant fatigue
Brain fog
Severe anxiety
Tingling legs and face

I had a MRI several years ago, which revealed a few signal intensity lesions and they discussed MS, but I just don't think it is based on the violence of my symptoms and how poisoned I feel.

I recently became a psychologist, which appears to have triggered additional anxiety and symptoms. I'm currently a psychologist who thinks about suicide to escape the 24-7 hellish symptoms. I truly feel like I'm dying. Sorry to hear others are struggling. I just have alwAys been searching for answers. Frustrated as hell.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20044
   Posted 4/2/2015 3:55 AM (GMT -7)   
dying - feel like, are dying and have died. clinical death is not death either. i have had near death experiences. 3 times in surgery. 2 in one and 1 in another. but they are only this as effective support is administered. you have only actually died when you have totally and utterly given up. totally and utterly. it is not in the human spirit to do this. i urge you all to not give up, to have strength in your hw brothers and sisters. continue being proactive. never bloody surrender. if you do that is when you have died, death in actuality will just be a formality. i send many healing thoughts to you all. many. flail that expletive sword. i know i am not on this forum, but the title caught my impaired sights eye. keep fighting. i am beggining to recover from many of my battles. love and peace.
THE HAPPY TURTLE.
SEE YA ROUND THE BEND!!
'

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 947
   Posted 4/2/2015 9:42 AM (GMT -7)   
I would see a doc who specializes in Mystery like diseases.
The only two I know is simon Yu in St. Louis and Tom Rau in Switzerland
I would bet that there and more but good luck finding them

hellomind
New Member


Date Joined Oct 2015
Total Posts : 1
   Posted 10/22/2015 11:01 AM (GMT -7)   
hello,
i had issues feeling chronically fatigued,
digestive issues like gastritis,
brain fog, spaced out, poor concentration
memory loss, depression, anxiety
muscle loss, muscle weakness
poor nutrient absorption
weakened immune system
and it turns out i had a yeast infection called Candida
which many doctors don't recognize
it's a yeast that naturally grows in our digestive tract
but it can grow unbalanced after a period of stress
or from alcohol use, or from antibiotics
or many other factors
and when it grows out of balance,
it can wreak havoc on the body and health

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 947
   Posted 10/24/2015 12:09 PM (GMT -7)   
Lots of head related issues. Ears-eyes jaw-sinus-eye floater-fog. I would see a biological dentist can get check.
I would be very surprised if dental isn't a big part of this.
Most people look at everything else-if everything else doesn't cure you check dental
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