Feel Like I'm Dying

New Topic Post Reply Printable Version
106 posts in this thread.
Viewing Page :
 1  2  3  4  5 
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Sep 2012
Total Posts : 531
   Posted 11/14/2012 4:39 PM (GMT -7)   
Hi To All-
Just one question. Does anybody have any tingling on the top of their head?

New Member

Date Joined Dec 2012
Total Posts : 2
   Posted Yesterday 7:23 AM (GMT -7)   
Hi there all that feel that they are dying, have funny tingling feelings on top of their heads,muscle twitching ,limbs like lead, weak limbs etc.. Etc.. The list of strange feelings is endless. Yes I've had most of them, and after 8 years I have my life back just still bit tired. In 2004 I was diagnosed with CFS or ME, a nasty chronic viral illness that seems to be brought on by a combination of long term mental and physical stress overload, combined with having some form of flu at the time? It's a complicated thing, and I could go into massive detail, but the main ways to start recovery I found were:
-Rest is essential. Sleep when you want to. When you can't don't fret about it. I used sleeping tablets for 7 years, which got me through the worst but were difficult to come off. Finally managed this year.
-I have been on 30mg paroxetine for 7 years. This stopped me from being anxious about the illness(which makes you worse) relaxed my muscles, and generally got me into recovery. This year I'm now down to 20mg as my bad relapses have stopped. I think doctors would prescribe a different antidepressant now, as this one is difficult to come off. I would say don't try to recover from this illness without medication.
-make sure your diet is top notch. Organic where poss, try to eat 7or8 portions of fruit and veg a day(it's quite hard!) have a yoghurt daily,oats say in porridge ,nuts,fish,chicken. I grow sprouted seeds which you can grow all winter and are delicious in a sandwich.
No tea(redbush or herbal only) coffee(use caffeine free) or alcohol. Alcohol is a big no no gives me flu symptoms, or did, I'm not going back to it at least just yet.
-supplements I used magnesium when v.ill, now just take vitamin D in winter as I'm in northern climate and not much sun in winter. I think a healthy diet is more important and cheaper!
-don't try to over do it. If you are still quite ill, forget large shopping trips, working, cancel Christmas and lie back, try to rest and be happy to stay at home, and keep warm. Don't get roped into feeling you have to do things to please other people. Cancel relatives who want to visit. Stick to a few closeby and sympathetic friends if you have any. I didnt! But I do now! Ignore people who tell you you are lazy or everyone's ill sometimes,or pull yourself together! take all the physical help you can get.
- try a very little gentle walk, even to your gate at first. If you are really I'll you may not feel ready for this. Gently build up your walking. You may feel worse sometimes. Don't worry just walk again when you feel ready.
- this illness takes time to recover from, it took me 8years and I'm still sleeping more than others. there are no miracle cures so ignore quick fix cures who just want your money.
-lastly most importantly, get a flu jab every year, this stops you going back over with nasty bugs. I felt bad for about a week after it when I was very ill, but nowadays a have no side affects. You should be eligible for one as cfs( also called ME) is a chronic illness.

Hope this helps!
Feel free to ask me anything else

New Member

Date Joined Dec 2012
Total Posts : 2
   Posted Yesterday 8:49 AM (GMT -7)   
Ps just want to say I've only learnt all this from 8years experience and have made many mistakes on the way. But I've gone from bedridden 8 years ago to having some sort of life about 3 years after that to 90% ish recovery today. And I'm much happier than I ever was even before I was ill !

New Member

Date Joined Dec 2012
Total Posts : 6
   Posted 12/29/2012 6:31 PM (GMT -7)   
You poor dear. I too have had all those symptoms & more since 1997. The first step to getting my life back was to get a sleep study. I have very slight sleep APNEA. So slight, almost uninsurable. However, Dr. went to bat for me. Insurance paid. CPAP isn't sexy. It took awhile but it gave me my life back. My neighbor with MS had the similar symptoms. Bcs she has MS, no one goes further. Dr's attribute everything to her MS. so did hubby & her too. I insisted (nosy neighbor me) that she get a sleep study. Then I insisted she change doctors when she wasn't getting the service I thought she should have.
Outcome: I got the machine 2008. Lost 40 lbs I am 6 days off the machine & have great energy. My neighbor, Noticed the difference in 1 week. I gave her my diet. 3 mths later, she lost 25 lbs & I get lots of love every day when she thanks me for getting her life back.

When you have all those symptoms, its really hard to know where to begin. When U can't think, can't concentrate, its so hard to deal with all the other symptoms. So imho, even if you can't get out of bed, I really recomend getting your brain back as the first priority. You may want to check my post InventingJoy or Joy de la Ren, on Yelp where I give more details abt my experience. A good one.

Also, right now, I'm writing up a summary for my pain dr. email me, if you want a copy. Pain dr's. Don't get me started! That's quite a story that I might write when I have time. There's some real scammers out ther. One, I would bet my bottom $$ was a
tweaker. smhair Yikes! I finally found a good one. Don't let anyone ever tell you "its all in your mind. Your a hypochondriac etc. Of course your depressed. Who wouldn't be depressed when your stuck at home, isolated, in pain etc. That doesn't cause the illness. The illness causes depression! In my mind I'm saying (directed to the dr. U stupid shlump etc.) nono Never think that a degree makes them omnipitent.(sp?) nono

I look down this forum & see no one has had a sleep study. I too was misdiagnosed with CFS. All those lost years cry It wasn't a dr. who suggested the sleep study. It was a friend. So I pay it forward & I suggest to all of you. I wish it was suggested to me about 10+yrs earlier. My new friends: Run, don't walk. Try a sleep study. It may give you your life back! turn Pls keep me posted. My neighbor's gratitude & love may run out. I want it from all of you LOL! Seriously, I really want to know & I care! Pls keep me posted. Puppy love from InventingJoy & the Furry Folk caringpro@gmail.com tongue

Regular Member

Date Joined Oct 2012
Total Posts : 143
   Posted 12/29/2012 9:58 PM (GMT -7)   
my wife and i have deulin' twin cpap's.
gout, sleep apnea, asthma, copd, high BP & cholesterol, Gerd, light headedness, muscle weakness.

USAF MSgt (E-7) Retired

New Member

Date Joined Dec 2012
Total Posts : 6
   Posted 12/30/2012 12:33 AM (GMT -7)   
That's so cool! I can hear dueling banjo's playing in the background. Care to share how the cpap's have affeccted your lives?
Puppy Love from InventingJoy & the Furry Folk Caringpro@gmail.com

Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 1/14/2013 9:18 AM (GMT -7)   
Well it's been close to 2 years since I originally posted this message so I thought I would provide an update for those who have been asking, and those going through the same thing.

I wish I could report that things have improved... but the truth is I have continued to go downhill since this whole mess started. 6 months ago I could do more than I can today... and 6 months before that I could do even more... it's kind of scary in a way not knowing how bad things will get but I'm trying to do just one day at a time.

The fatigue has gotten a lot worse... but what's really troubling is I get this burning fatigue feeling in all of my muscles. The type of feeling you would get if you're working out to the point of not being able to do anymore. I get this just from doing my hair, or standing for even 30 seconds then I have to rest my muscles.

Even doing simple tasks like loading the dishwasher... when I bend over slightly my legs start to wobble as if all the energy is drained out of me. Same thing with my arms when I'm holding anything.

I also seem to be very sensitive to temperature... having hot and cold flashes all day long.

Would love to hear from others going through these same things. Feel free to private message me through my profile.

New Member

Date Joined Jan 2013
Total Posts : 1
   Posted 1/14/2013 5:05 PM (GMT -7)   
Hi I just signed up simply to comment on this discussion. I suffer from Chronic Fatigue Syndrome and have been ill for just over 3 years. Before I became ill I was a qualified nurse and loved my job. My condition started after I received a flu vaccine and then contracted a flu virus. It is common to develop CFS following an illness however it can develop spontaniously as well.
Your symptoms sound very much like mine however, I have a couple of suggestions have you been tested for Ross River Virus or Glandular fever? Both of these condition have been known to produce the symptoms you are experiencing and can be contracted by mosquito bites. Given you were camping I thought this was worth a sugesstion. You can be tested for these conditions in blood tests if you have not already been.
Okay so back to my experience with CFS with the exception of Magnessium and Vitamin B12 all the regular tests I have had done (bloods, CT scans, MRI's, Ultrasounds etc) have been normal. I have had some abnormalities in non standard tests. I was tested for pyrrole disorder (urine test) I was borderline positive however this test discovered I had high copper levels which is treated with Zinc and Vitamin B6 supplements. I have also recently had a hair sample analysis which showed high aluminum and low chromium. I'm not sure what the treatment for these are yet as I haven't been able to gat an appoinment with my doctor to discuss them (she's on holidays).
There isn't a specific test that can be done for CFS it is mostly symptom management. The former reccommended treatment was to exercise and push through to try to increase tolerance this has since been disregarded as it has shown to be ineffective and only exacerbates the symptoms of CFS making the sufferer feel worse. It is now reccomended that the sufferer work within one's own personal limits and not try to push him/herself to hard as this only makes them feel worse. Gentle stretching exercises can help.
With the lack of activity sufferers of CFS or even other conditions in which extreme fatigue is a symptom of pain can be increased and/or mobility can be decreased because of the lack of exercise or movement the body is able to perform. This is due to deterioation of muscles/ligaments/bones etc from lack of use. I had one doctor that made a good suggestion which has helped me with my pain and movement problems. He reccommended gentle stretching exercising and very low level weights (like a can of food or something), no activity that increases heart or respiration rates as this will often provoke a worsening of symptoms. He told me only do the exercises for a couple of minutes every 2-3 days if that's all I think I could stand.
As I have already said supplements do help Magnesium, Vitalin B12, Vitamin B6, Co-enzyme Q10 (helps with brain function and memory). Other supplements like fish oil, probiotics and multivitamins can also help to improve health.
I hope my suggestions help. For what it's worth I know how it feels to be sick all the time. People don't understand and doctor's can treat you like a waste of space. I went to multiple doctors in the begining because they all wanted to diagnose depression which I knew I did not have.

Mystery Illness
Veteran Member

Date Joined Dec 2011
Total Posts : 767
   Posted 1/16/2013 8:16 PM (GMT -7)   
I just stumbled upon your post. I am normally on the Lyme Board and was just looking at other health topics. I have almost all of your symptoms and I have late stage Lyme Disease. Your symptoms are consistent w/ Lyme Disease and it's very "suspicious" that your symptoms started after a camping trip. I would recommend that you go to the Lyme forum on healing well. There is a thread, called "New to Lyme" that has a lot of good info. You need to find a LLMD (Lyme Literate MD) to be properly evaluated, tested, and diagnosed w/ Lyme Disease. You said that you are in Canada? I'm not sure if there are any LLMDs in Canada. More than likely, you would need to travel to the U.S. to see one. Lyme testing is complicated, but in a nutshell, it's highly inaccurate and the sicker you are, the less likely that a Western Blot test will be positive because Lyme Disease supresses the immune system, making it difficult for the body to form antibodies. The best testing is through IGENIX labs, but most Drs. don't tend to order tests through them. However, Lyme is a clinical diagnosis, which is why you need to see a LLMD that specializes in it for proper evaluation.

Lyme Disease is very controversial - with both testing and treatment and most Drs. don't even want to be involved in it.

Also, there are many lyme co-infections such as Babesia and Bartonella. Both of those are a big cause of severe anxiety and insomnia. Babesia is also known to cause night-sweats and air-hunger. Not sure whether or not you have those symptoms.

Also, in the mean time, there are things that you can do to help yourself feel better, like detoxing. This info. is on the new to lyme thread on the forum. There are also herbal protocols (such as one by Stephen Buhner) that you could start yourself while trying to get to see a LLMD. Dr. Buhner has a book that you can read that explains it.

I hope this helps you. I wish you the best and a return to health.

New Member

Date Joined Jan 2013
Total Posts : 1
   Posted 1/18/2013 2:55 PM (GMT -7)   
Hello jr991,

Your symptoms sound exactly like something is wrong with your thyroid. You should check for Hashimoto's disease! Even if the first blood results show nothing (your doctor will check TSH, fT3 and fT4) it is possible that you have it. A more detailed test for antibodies (anti-Tg and anti-TPO) and an ultrasound of the thyroid
will bring clarity. Even with a normal TSH you can have the disease already and have symptoms from it!

Hashimoto's disease is an autoimmune disease where your body is destroying you thyroid gland. As a result you will have a lack of thyroid hormone or possibly at the beginning of the disease or during the destroying process too much of it. So you have either hypothyroidism (http://en.wikipedia.org/wiki/Hypothyroidism) or Hyperthyroidism (http://en.wikipedia.org/wiki/Hyperthyroidism). I know wikipedia isn't the most trustworthy source but they list a lot of possible symptoms. Some people experience no symptoms having the disease and others all of them and also mixed up.
I belong to those people having experienced nearly all of the possible symptoms. That's why I directly thought of it when I read your post. I searched for feeling like dying while having a panic attack (was looking for tips how to calm down) on google and that's how I found your entry.

The list of symptoms is long but especially your sensitivity to temperature, muscle and joint pain, fatigue and weight loss sounds a lot like a thyroid problem.
Thyroid problems can explain a lot : weird feelings like itching or trembling at any part of the body, digestion problems, a tense or uptight feeling at the neck, anxiety/panic attacks, etc.. It basically affects the whole body.
You obviously have a feeling that something is wrong with your body. I know this feeling and many people told me that I have nothing and I should just reduce stress and do more sport. I told my doctor to at least do a blood test and that's where they found that something is wrong with my thyroid levels and later also found a lack of Vitamin D3 (which is common for Hashimoto and can cause also a lot of symptoms). btw I realized that the feeling that something is wrong mainly occurs in a phase where my thyroid gets destroyed a lot (I sometimes have pain ,where the thyroid is located, then).
So even if it isn't your thyroid it could be another autoimmune disease. I would always let the doctors check first and if they find nothing at all you can still start listen to people telling you that it just comes from stress etc. ...

I hope I could help you (or maybe others who have similar symptoms). Thyroid diseases are much more common than people think and I am convinced that it should also be common to check the thyroid levels once in a while. I didn't even really know what the thyroid was until I got the diagnosis and also doctors often forget about it (no idea why). The good thing of having the diagnosis is that you can do something about it and believe me it feels good to know that I was right. However, I experienced it myself that sometimes when you search for explanations in the internet you feel even worse afterwards because you read all these possible diseases and you start looking at your body in another way, noticing every tiny little change or symptom. Just be aware of it and try to stay rational ( I know easier said than done).

I wish you all the best and how we say in the Netherlands: Alles komt goed! :) (Everything will be fine)

New Member

Date Joined Feb 2013
Total Posts : 1
   Posted 2/13/2013 9:20 PM (GMT -7)   

Chronic fatigue syndrome (CFS) is characterised by medically unexplained, disabling fatigue and neurological symptoms.

 It has been characterised by a system under chronic stress and chronic inflammation

Who does it generally affect?

Many with CFS are achievement-oriented go-getters

Most people with CFS have some degree of depression

Women are four times as likely as men to develop CFS.

The illness most often affects people aged 40–59.

Many sufferers are Type ‘A’s who multi-task, juggle careers, families and studies

How does it affect people?

Even when CFS sufferers sleep, their stress-response systems are on high alert, signalling it is not safe to relax which would be why many awaken to exhaustion having not really slept at all.

In short periods this alertness may be necessary for survival, but chronic or repeated alertness can result in damage to health. (It’s interesting to note that people in WWII in concentration camps after being rescued from the camps slept for days after experiencing this high state of alertness for long periods)

With stress, cortisol is released in response to it. However, prolonged cortisol secretion (which may be due to chronic stress results in significant physiological changes and this prolonged state  may impair normal brain function setting off a chain reaction in chemicals in the body. 

It would be similar to people in this highly anxious state to compare it with  post-traumatic stress disorder, but the experience in CFS is most likely initially a physiological one brought on by :a post viral  or bacterial response, heavy metal build up in the body  over time like :cadmium, mercury, lead or other toxic metals, exposure to toxic chemicals. It also could be emotional shock, trauma or state of chronic anxiety.

This stressful life experience can have significant effects on a variety of physiological systems, including the *autonomic nervous system and the immune system.

*(The autonomic nervous system(ANS) is the part of the peripheral nervous  control system which functions largely below the level of consciousness, controlling functions like: heart rate, blood pressure, digestion, urination, respiratory rate, salivation, perspiration, dilation, sexual response. )

A recent study at the University of NSW found the ANS function in CFS patients clearly indicated a dysfunction in stress-response in neural and physiological systems.

In other words this continual state of chronic alertness with varying levels of stress may set a pattern for the brain to follow and become a habit impairing a normal relaxed function and causing damage to the physiology of the body.

At least 3 of these Symptoms would point to chronic fatigue syndrome


Dizziness, Post-exertion tiredness

Insomnia/Un-refreshing sleep

Widespread muscle and joint pain

Sore throat

Headache type not previously experienced

Cognitive  difficulties

Mental and physical exhaustion

Muscle weakness

Increased sensitivity to light, sounds and smells


Cardiac and respiratory problems 

Impaired concentration

Tender lymph nodes

Restless leg syndrome

Food intolerances

Irritable bowel syndrome, abdominal pain, nausea, diarrhea or bloating

Chills/night sweats

Brain fog

Chest pain

Shortness of breath

Chronic coughing

Visual blurring, eye pain or dry eyes

Difficulty maintaining upright position.

Depression, irritability, mood swings, anxiety, panic attacks


Impaired concentration

Tender lymph nodes

Restless leg syndrome

Food intolerances

Irritable bowel syndrome, abdominal pain, nausea, diarrhea or bloating

Chills/night sweats, Brain fog

Chest pain, Shortness of breath

Chronic coughing

Visual blurring, eye pain or dry eyes

Difficulty maintaining an upright position.

Depression, irritability, mood swings, anxiety, panic attacks


 Given the similarity between chronic fatigue syndrome and fibromyalgia, many physicians believe that they are the same disease with different primary symptoms.


It appears there are 4 main areas of focus to rehabilitate the CFS sufferer.

1.     Reduce the stress and alter habitual thought processes through re-learning  by way of ‘cognitive behavioural therapy” which is often used to treat CFS patients by helping them understand individual symptoms and beliefs by avoiding these stress triggers which may be incite the condition. This may mean clearing the head of preconceived anxieties by re-learning the process of mind control.


2.     Some people say their CFS symptoms get better with complementary or alternative treatments, such as massage, acupuncture, chiropractic care, yoga, stretching, or self-hypnosis. It is a learning process and not a quick fix but has achieved success. In other words controlling thoughts processes through conscious self-intervention.


3.     Many patients with CFS and are deficient in magnesium. Magnesium is essential for over 350 different functions in the body. Our body slows down during deficiency, resulting in slower cellular functioning, making the body sluggish, until fatigue eventually kicks in.


Magnesium is found in bones, red blood cells, teeth, and when combined with zinc and iron, helps with the enzyme system. The use of magnesium supplements can greatly improve the condition and dramatically improve energy levels. Magnesium, Potassium and Calcium are vital requirements in a healthy body to function correctly.


4.     Detoxing any heavy metals from the body is also vital.


5.   Good sleep is also vital to a healthy functioning body by taking extra minerals and salts into the body this will eventually feed the cells starved of the right minerals needed to correct the condition and good sleep will follow.


6.   Detoxing the body  of toxins of heavy metals


7.   Measured degree of exercise each day without over doing it to the point of exhaustion. Gradually strength and energy will improve



Cognitive behavioural therapy is worthwhile learning to ease out the bad thought habits that may contribute to CFS. Many have had success with the program and once learned is easily self-managed.


Minerals provide the building blocks from which the body can achieve optimum health for proper growth and body function. Repair Incontinence recommends a dose for Living Clay is 1 level tablespoon each night before bed or 3 capsules.

This will not only remineralise the body with essential minerals, but aid in good sleep significantly as well as slowly detoxify the body.


Finally exercise produces endorphins which are the body’s natural opiates and not only give a feeling of wellbeing after exercising but also relax the body and strengthens it.


Go to www.repairincontinence.net for further info

Good luck




Post Edited (rossco) : 2/13/2013 9:24:52 PM (GMT-7)

Regular Member

Date Joined Jul 2012
Total Posts : 335
   Posted 2/15/2013 9:15 AM (GMT -7)   
Thank you rossco, that's a wealth of information not know by me on CFS, I was starting to think i'm the only one with this disease who is also without a Dr. to treat it. But I have learned something new today and that counts :) Among other things I've learned is that I need to stop feeling sorry for myself ;{
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

Post Edited (Recoveryme2day) : 3/15/2013 7:28:09 PM (GMT-6)

New Member

Date Joined Feb 2013
Total Posts : 11
   Posted 3/2/2013 8:31 PM (GMT -7)   
Lyme and other tick born infection. My son tested negative for 4yrs as he declined. Treat!

New Member

Date Joined Mar 2013
Total Posts : 6
   Posted 3/3/2013 4:00 PM (GMT -7)   
funny,but it is like reading exactly like myself...so these symptoms have a cause.
ive had MRI s and cystoscopy(never again and absolutely no more sex drive!)ive had epidurals
and am due another soon
i take codeine amytriptotine zopiclone fluoxetine tramadol and now gabapentin.
thats it it feels .like im about to drop dead anytime soon.
the last cou0ple of months,i developed a twitch in my left eyelid,and didnt think too much about it and,are happening during the day,and also
now im having these twich/tremors all over and just about when falling to sleep,these are quite violent,on a few occassions,enough to throw me out my bed.im afraid to go to sleep its quite scarry,to be honest.
but these tremors or whatever to call them,during the day and especiallly in mmy arms and hands,where it feels like(weve all touched something electricamy doctor says it is l with wet hands?¬)an electric shock and really powerful,
my doc says it is syatica,but there must be more to it than that:where does the extreme fatigue come from?the stabbing sensatioin my right side of my stomach,no balance,blurring vision,and sound like a tap being turned on,or a hi pitch drone...allso afriend says my left pupil is open very wide,compared to the other one.funny really that most of the aching/tremors/excruciating head and neck pain,are concentrated down my left side
some days i get stuck in weird positions open mouthed,and so tense in the muscles it feels like something is going to SNAP!i really feel like im dragging a corpse around.i am so detached on some days,no concentration,no memory and the only times i get out is to pay bills and food,and walk my dog
im on ESA and am waiting on a date for an appeal,as i 'scored' no points.
im on my own,have no real contacs anymore,and im fairly scared as to what is happening to me.can people develop epilepsy,i thought that people were only born with it?
im so exhausted trying to chill the pain and fighting the tension and long story short,its all getting worse by the day
and need some sort of answer to this.im 45 years old,done all the drugs n alchohol thing,and have had my fair share of knocks,and im not easily pained,but this,this is awesomely skilled at making me totally incapacitated,or passed out,for hours on end.
i dont drink now but smoke(only tobacco)fairly heavyly,but one thing i did want to mention was that these tremors started after using a TEMS machine,patches that vibrate with different intencities that you place on a pained area.
have i unwitingly switched something on in my nerves with this treatment?
well i hope someone can help me to understand why this is happeening,as im fast loosing the will to live with myself.
thanks for reading ok?

Post Edited (dandlion) : 3/3/2013 4:08:59 PM (GMT-7)

Regular Member

Date Joined Oct 2012
Total Posts : 20
   Posted 3/15/2013 5:16 PM (GMT -7)   
I experienced EVERY one of your symptoms in 1998.  I went to Mayo Clinic for 10 days and underwent every test in the book.
Their diagnosis was fibromyalgia and severe clinical depression.  I was admitted and treated for the depression and I improved about 90%.  I am on Remeron for depression for the rest of my life.  I still have the fibromyalgia and some other chronic conditions (heart arryhthmia, GERD, Meniere's) but the symptoms I had went away when the depression lifted.
I went on disability for six months because I couldn't function.  After the depression was treated I resumed my career as a college professor.  The difference was dramatic.
Depression runs in my family.  I was certain that the fibromyalgia was causing me to be anxious and depressed but that was not the case.  When the depression was treated, even my fibro pain lessened a great deal.

New Member

Date Joined Mar 2013
Total Posts : 1
   Posted 3/16/2013 8:21 PM (GMT -7)   
Hi there,
I joined just now because I am also very tired all of the time (I can never make it through even a quarter of a movie before I am sound asleep), but just 5 years ago I started getting the muscle spasms, extreme aches and was losing my balance. Doctor's mystery patient is what they called me. Little by little I started developing different autoimmune disorders: Pernacious anemia, Hashimoto's thyroid disease, my body doesn't absorb certain proteins, etc. I was always the healthiest of all of us kids growing up, but just a little over 2 years ago they found out what I did have. It's called, "Stiff Person Syndrome", a very rare autoimmune disease, in which your antibodies attack parts of your body. I'm just kind of wondering by reading some of your symptom's if this isn't a possibility. Not saying that fibromyalgia or lyme's disease couldn't also be possible, but this might be another thing to check up on. If your doctor/neurologist hasn't ever heard of it, they draw blood and check for a certain protein (GAD-65 is what they call the test and the protein) to see what the levels are at. Good luck with everything and I hope you find what it is that you are looking for :-)

New Member

Date Joined Mar 2013
Total Posts : 2
   Posted 3/24/2013 5:20 AM (GMT -7)   
I had almost all of the symptoms you had - they started 15 years ago when I was 17. Through MUCH research and trial and error, I have this diagnosis:

-CFS and Fibromyalgia
-Toxoplasmosis (parasitic)
-Functional seizures/functional weakness (google Dr Jon Stone along with those search terms)
-Irritable Bowel Syndrome
-Chronic Insomnia
-Various mental illnesses brought about by the above

I have found the below EXCELLENT - I have gone from bedridden and wasting away to the nearest to healthy I've ever been.

-As much organic vegies and fruit and product as you can afford
-Building up walking (to the letterbox and back, to the lamppost and back, etc until you reach 1/2 an hour)
-Usana Essentials
-High potency Olive Leaf Extract (strong anti-viral/anti-parasitic/anti-fungal/anti-bacterial)
-Counselling and psychology - past issues and unforgiveness (not saying you have this but it was my experience) can weigh you down and keep you sick
-Some social contact
-Avoid antibiotics unless absolutely necessary and make sure to take a strong acidophilus supplement with it
-Try gluten-free, dairy free or sugar-free one at a time to see if it makes a difference.

That's what helped me - I really hope it helps you.

New Member

Date Joined Mar 2013
Total Posts : 3
   Posted 3/25/2013 11:31 AM (GMT -7)   
Hi, I was diagnosed with CFS and Fibromyalgia and sufferers for year. I was told there was nothing I could do. Until I saw a doctor who prescribed antibiotics -- I took doxycycline for four months. Boom! All symptoms of pain and fatigue GONE. 100 percent remission for 7 months. Some symptoms (mostly fatigue) reoccurred after a cold or virus. Took antibiotics again for three months and been in 85 to 90 percent remission for one year and a half.
YOU NEED SOMEONE WHO WILL TREAT THIS WITH ANTIBIOTICS! Plain and simple. Don't take no for an answer.

New Member

Date Joined Mar 2013
Total Posts : 3
   Posted 3/25/2013 11:40 AM (GMT -7)   
And 85 to 90 percent remission is great -- I can fully function. Back to work, the whole gamut. Still can't over do my aerobic dance but I can't do it about a half hour a day.

New Member

Date Joined Mar 2013
Total Posts : 3
   Posted 3/25/2013 11:41 AM (GMT -7)   
I mean I CAN do it for a half hour, not can't. Sorry my typing is terrible today.

New Member

Date Joined Mar 2013
Total Posts : 2
   Posted 3/25/2013 5:10 PM (GMT -7)   
Mine was, ironically, partly caused by antibiotics (chronic widespread candidiasis).

New Member

Date Joined Mar 2013
Total Posts : 1
   Posted 3/30/2013 2:04 PM (GMT -7)   
OMG! You are me, or I am you. I am going through the exact same thing word for word and cant get help...what if anything have you come up with? Sitting here right now I feel like dying.

New Member

Date Joined May 2013
Total Posts : 3
   Posted 5/8/2013 6:47 AM (GMT -7)   
Hi You are describing me perfectly1 you are not alone and As I write..I feel like Im "dying"! (I do not believe you have Lymes Diesese(especially if you tested negative) You have Chronic fatique Syndrome. Ive had it since 1989..after a bout with a terrible flu. I can remember to the HOUR when it struck. A series of ER visits(Id be so weak ,Id be on the floor!) revealed nothing on tests(all normal) which made it frustrating..my "tierdness I knew was beyond normal..Finally in 1990 ,I was formally diagnosed with CFS..and my DR said most therapies ,although some might help a little,would be useless. the best one for me was B 12 shots. It is now 2013..I struggle off and on with this..now I have IBS and IC..I can never wake up feeling "good"..there are however little pockets of well being that come and go..I struggle with having to still perform Motherly duties for my kids and family..my career came to a dead halt(commercial Artist) I cant work and am still fighting for Disability(its hard because you cant "see" CFS on a medical test. What Ive learned to do is take each hour and day at a time..Start your morning with prayer and realize God is in controll(you will experiance good days ..Realize too youre not alone..just wondering..do you have almagan fillings? I became very sick after dental work too..we CFS are very chemically sensative(If you ever need surgery ,be sure to tell your Dr,because we do not respond well to anasthetics and need a special protocol..Also see if you can join a support group..it feels a lot better to connect with others..Maybe they will soon find a cure..try and eat well..take care and God bless:)

New Member

Date Joined Jun 2013
Total Posts : 16
   Posted 6/4/2013 4:38 PM (GMT -7)   
For lyme disease check out Bob Becks protocol on You Tube.

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/14/2013 11:53 AM (GMT -7)   
JR991, I know I'm a little late here but if you still check this, I would recommend being tested for Chiari Malformation. My mother had surgery for it, I have many of the same symptoms but have minimal insurance and can't afford the tests right now for myself. It can cause many of the same symptoms you listed and can be a beast to get a diagnosis for. It involves multiple neck MRI's and a doctor who knows what they're looking for. Hope this helps!
New Topic Post Reply Printable Version
106 posts in this thread.
Viewing Page :
 1  2  3  4  5 
Forum Information
Currently it is Friday, December 15, 2017 11:12 AM (GMT -7)
There are a total of 2,905,792 posts in 318,891 threads.
View Active Threads

Who's Online
This forum has 158242 registered members. Please welcome our newest member, Jay777.
348 Guest(s), 12 Registered Member(s) are currently online.  Details
PeteZa, Melissa D., xfmlg, Hoagie, Girlie, Eph, Tudpock18, Samura, Tim Tam, straydog, UCmee, iPoop