Feel Like I'm Dying

Hi To All-
Just one question. Does anybody have any tingling on the top of their head?
LalA

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 !

my wife and i have deulin' twin cpap's.

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.

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.

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 alert ness may be necessary for survival, but chronic or repeated alert ness 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 alert ness 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 alert ness 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 Fibromyalgia 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 Depression 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    G iven the similarity between chronic fatigue syndrome and fibromyalgia, many physicians believe that they are the same disease with different primary symptoms. Treatment 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 behaviour al 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 fe ed 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   Summary Cognitive behaviour al 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 rossco     Post Edited (rossco) : 2/13/2013 9:24:52 PM (GMT-7)

Lyme and other tick born infection. My son tested negative for 4yrs as he declined. Treat!

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.

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.

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.

Mine was, ironically, partly caused by antibiotics (chronic widespread candidiasis).

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:)

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!