Discussions By Condition: Medical Errors

Extreme fatigue - Can anybody help?

Posted In: Medical Errors 16 Replies
  • Posted By: Anonymous
  • April 7, 2007
  • 09:59 AM

Apologies beforehand for my English, I live in Greece. I am wondering whether somebody could relate with me or have a different perspective on what I have been going through for the last month and a half.
I used to smoke a lot and drink a lot of coffee on a daily basis (around 6 cups of nescafe), mainly due to my work which is very demanding and stressful. Two months ago, after having a coffee in the morning, I developed tachycardia and went to the hospital because of a feeling that resembled a panic attack. The cardiologist who examined me told me to quit immediately smoking and drinking coffee and put me on a beta blocker pill (Inderal) for 2 weeks. After a week or so, I started feeling really tired, to the extent that I could not walk for 10 minutes. I went to the hospital again and was told that it was either the pill which can have such side effects, or I was experiencing withdrawal symptoms from nicotine and caffeine. The doctor switched my medication but the symptoms remained and got even worse. There were days that I was so weak, that I could not get out of bed. As this thing would not go away, I was admitted to the hospital for a thorough check. As I am 32 and up to now quite healthy with no medical conditions or problems, my physician was quite alarmed that the fatique would not go away.
In the hospital I had all sorts of tests (half of them I cannot even translate!!!), including all sorts of blood tests (they revealed no anemias, no problems with the thyroid, no deficiencies in nutrients, no HIV and other related diseases), on the whole, my exams were so good I could not believe it. I had also a chest and abdomen cat scan, a thoracic puncture and a myelogram, a stomach examination and a biopsy- they were all clean. My virological tests revealed that I had a type of a gland virus (something like mono) and while I was in the hospital, I was also diagnosed with a subclinical form of the Marfam syndrome, due to the fact that I have long fingers (arachnodachtylia) and a high palate-my heart ultrasound revealed no problems and I was told by the doctors that I have nothing to worry about, that it is a very minor form of the syndrome. The only advice I got re. the Marfan syndrome is to have a heart ultrasound every year, to follow up the condition of my aorta. I researched the syndrome a little bit on the Internet and found it quite alarming, but this contradicts what my doctors told me about the form (subclinical) of the syndrome that I have, that it's basically nothing. I don't know whether I should leave it at this or start looking into it into more depth.
Anyways, almost a month and a half after my first symptoms, I am still on a sick leave and find it quite difficult to function on an everyday basis. I rarely get out of the house (still get tired very easily) and I find this whole thing very disturbing, as I am a very active and social person, nothing like this has ever happenned to me before. I have become very moody and irritable, but I associate that with the overall feeling of weakness and being at home, which makes me feel completely incompetent. So far, the doctors have come up with the following:

1. Potential chronic fatique syndrome
2. Fatigue due to the gland virus that I have, that needs to do its "cycle"-apparently there is no cure.
3. Psychosomatic causes due to the extreme stress that I usually go through
4. Withdrawal symptoms

I feel better on the whole, but I feel weak at the knees and I feel the same weakness in my leg muscles. I occasionally have an upset stomach, too. I can't walk long distances and I am really frustrated because nobody seems to be giving me a concrete answer re. what's wrong, people are treating me a little bit in the sense "hey, get a grip, there's nothing wrong with you, your mind is just playing tricks on you". To be honest, I highly doubt that. One typical symptom of the Marfan syndrome is also leg weakness, so I am really perplexed that not a single doctor of mine seems to be making that association. They probably know better than I do. What the hospital neurologist told me is to come back after a month or so if the symptoms persist in order to have some more neurological and brain/sleep tests. What do you think I should do from now on? I just want a normal life back, I can't be on a sick leave forever!
Any ideas, anybody? Should I listen to what the doctors say or should I go with my gut feeling??? Thank you for listening & Happy Easter!

Reply Flag this Discussion

16 Replies:

  • You said your doctor switched Inderal for something else, but you didn't say what. I'm assuming both medications were to treat hypertension. Are you still taking the second medication? If you are it is likely that the medication is causing your fatigue. Tell your doctor you would like to try a 2 week period medication free. After 2 weeks you should feel 100% better.
    Anonymous 42789 Replies Flag this Response
  • Get sleep study for possible obstructive sleep apnea.
    Anonymous 42789 Replies Flag this Response
  • I would think about the cause being nicotine withdrawal. I'm having a similar problem that began suddenly about 15 days after I quit smoking, except i also have extreme muslce aches and joint pain. I've even been using a wheelchair when I go to the grocery store, and i'm only 28 years old. I started smoking again and the symptoms decreased.
    Anonymous 42789 Replies Flag this Response
  • Just for the ***l of it ask your Dr if it could be Sarcoidosis (it can,t hurt) but this disease brings on bouts of weakness that make you feel like you are 90 yrs old!
    Anonymous 42789 Replies Flag this Response
  • Have you even considered you might have Lyme's disease? Have you ever been bit my a tick? had a rash? Lyme's disease brings on lots of fatigue.Another possibility...get your hormone levels tested.Keep trying different doctors. Possibly a osteopathic doctor or a nutritionist. If you know that something is wrong then keep looking for answers.
    Anonymous 42789 Replies Flag this Response
  • Hi Lenna,Your symptoms all sound very familiar. Please know you are not alone in this and that there are many, many others who feel your pain. I think we all may have different things that may trigger the immune suppression response in our bodies. The Epstein-Barr virus that you mention (causes mono in young adults and teens etc.) may be a primary problem or may simply be a manifestation of the suppressed immune system. I have it too. I think we have to treat these things symptomatically. It is troublesome though that many doctors think we are either "depressed" or just imagining things. The symptoms are very very real. I was lucky enough to find a doctor who ordered a blood antigen test to find at least the virus that demonstrates a weakened immune system. I find exertion to be difficult and especially the day after exerting myself such as working in the garden. I have to rest frequently. It is difficult to lift up from a chair or an automobile.Environmental exposures may trigger such events as well. Depending upon your occupation, stress levels, levels of polutants in your town or workplace, chemical exposures, mold/fungus or fungal infections or some other infection etc....... There are no easy answers but these areas are things to look at. Additionally, diet may have a large role as far as vitamins, refined sugar and flour consumption, coffee etc..... yeast levels in your digestive system etc... I am ready to give whatever is necessary a try.I have heard that sometimes people's symptoms resolve after different periods of time. I hope that is the case for you. (and me too.) A book by Dr. Teitlebaum "From Fatigued to Fantastic" can be found on Amazon.com which explains a lot. There is a revised edition coming out in September. You might want to at least order the 2001 version, it is about $10 U.S. in paperback. I'm not saying it will help, but it has a lot of good information. I hope you feel better soon Lenna. Best regards to you,John
    Anonymous 42789 Replies Flag this Response
  • For more than a year I experienced severe fatigue, along with severe heartburn and other unexplained ailments that continued to escalate to the point that I was barely able to get out of bed.During this long period which I associated with the chronic depression I had been suffering from for yrs...came a new symptom which began to drain all color from my body. At times I appeared ashen and had difficulty breathing, along with a "wierd feeling" every morning before I rose out of bed that I was about to have a heart attack.In October of 05 I finally went to a doctor and made her fully aware of the fact that I believed I had already experienced a "heart attack" or was clearly on the brink of one.I gave her a list of all the symptoms I had experienced "twice" just a few weeks prior (chest pain, severe increasing heartburn, night sweats, nausea, heart palpitations, shortness of breath, etc.) minus the pain in the arm...so...an echocardiogram and blood work and a chest x-ray were performed...indicating no heart related problems...until I returned again...with the same symptoms...more tests...and was diagnosed with acid reflux disease and given a trial medication called Nexium, which should resolve the symptoms of severe heartburn.In early Nov. (less than 10 days fronm diagnosis) I was awakened with the most painful need to urinate, and frantically ran to the bathroom before my bladder exploded.It was only after I voided that I became aware of intense pain in both arms...that grew progressively worse with each beat of my heart. My daughter recognised other symptoms of which I was unaware (grey ashen color, hyperventilated breathing, cold clammy skin) and promptly dialed 911...who unpon arrival...assessed my symptoms to be a severe anxiety attack caused from the acid reflux disease...until I began to go down hill...clearly showing symptoms of an "Acute MI or Heart Attack" of which it took more than 20 minutes to stabilize...before transporting to the ER.Immediate heart catherization revealed a 99% blockage with angioplasty & heart stent procedures performed.In conclusion...after procedure...congestive heart failure is the "REAL DIAGNOSIS" that all my symptoms were correlated to.Keep pestering the doctors to find the ROOT CAUSE of your problems...before it's too late.
    Anonymous 42789 Replies Flag this Response
  • Hi Lenna,I just got diagnosed after 8 years of "chronic fatigue syndrome" and almost failing out of med school from the disabling fatigue. As it turns out, I have a rare variant of a common disease. I have Hashimoto's encephalopathy, which is also known as steroid responsive encephalopathy associated with autoimmune thyroiditis (SREAT). It's symptoms included loss of balance, profound fatigue, headaches that would get worse doing things like climbing stairs, memory difficulties, problems with word finding, sleepiness, startling easily, swollen lymph nodes in my neck...A very sharp neurologist diagnosed me by looking for thyroid antibodies. Normally these antibodies are not tested for unless a patient has abnormal thryoid hormone levels (TSH and free T4)... I have had mine tested 6 times over the years and they were always normal. As it turns out, by the time I saw the neurologist, I had problems swallowing and a hoarse voice, and the lymph nodes had gotten larger, which prompted another doctor to order a thyroid ultrasound. Sure enough, my thyroid gland had nodules in it indicating it was under attack from my own body (by the antibodies). Hashimoto's thryoiditis is the more common disease, and it can linger for years. It affects far more women than men and it passes though several phases. First, your gland starts getting attacked and you have these periods where your thryoid hormone dumps out into your body, making you jittery and your heart race, etc. Then you can pass through a phase where you are euthyroid- your gland still functions and is under attack but not actively dumping out hormone. Eventualy- and it can take years- your gland will burn out/get completely eaten up and you will become hypothyroid with all the sluggish symptoms that go with it. Along the way, you may have periods of hormone dumping and the palpitations, jitteriness, etc...The encephalopathy/SREAT is a rare thing that can go along with the thyroiditis, although, personally, I suspect that this may be the answer to CFS. Only research will tell.I have no idea if this is your answer, but i'm going to throw this out as an idea because I don't want another human being to go 8 years like I did being fed Paxil like they were tic tacs. The treatment is steroids.
    Anonymous 42789 Replies Flag this Response
  • I have recently discovered that I have vitamin D deficiency. My symptoms have been profound exhaustion, extreme mental fog, and mood changes. I only found out by doing research online and then taking suppliments and my symptoms have completely resolved (in a few days). In my research I discovered that some medications can cause vit D deficiencies.http://www.wrongdiagnosis.com/v/vitamin_d_deficiency/causes.htm#medicI also have gluten intolerance (my symptoms were exhaustion, extreme GI upset, gastric reflex so extreme that I couldn't swallow). It is possible that one caused the other. My gluten intolerance was missed by multiple physicians also, which was very discouraging. Once I figured that out (six years ago) and stopped eating anything with gluten, my symtoms completely resolved.After doing much research I've discovered that Celiac's disease (a gluten autoimmune disease), gluten intolerance, and Vit D deficiency are three very common problems that are missed diagnosises because they mimic so many other diseases.Hang in there and keep asking questions and doing research. You'll figure it out. Doctors tend to want to just prescribe a medication in hopes that it will solve the problem. They've lost their clinical problem solving abilities.Best of luck,Kathy
    Anonymous 42789 Replies Flag this Response
  • Hi Lenna,I came across your posting and couldn't help but notice the similarities of what you are going through. First off, we're both fairly young and the extreme fatigue came on suddenly (I'm 32 now). For me, it started one morning 2 years ago, with a slight chest pain and a feeling of doomsday- The ER confirmed a heart attack with blood work. Heart catherization showed no blockage- clean as a whistle...Doctors were a bit puzzled, but released me after 3 days. From there on, I haven't been able to walk more than 300 steps. I even had to fight an 80 year old for a power chair at the super market. There's been all sorts of test done on me to test for heart disease- other than the heart catherization, a heart thalium stress test, EKG, etc has been done and all came back normal. Also, all other kinds of test, from thyroid, to diabetes, to full blood workup, to lyme disease... Sometimes I'm not sure how much longer I can take of this. I even took prozac for a couple of months (didn't do any good). Before that one event I was very healthy and active, walking about a mile a day, and running a few miles on certains days...biked on weekends...I'm about out of ideas of where to go next. I can't even find a doctor to see now- I've about exhausted every type of specialist there is to see. I'm hoping you're doing better now and hoping you've found something you can share.
    cyang408 6 Replies
    • August 26, 2007
    • 05:21 AM
    • 0
    Flag this Response
  • Sounds like your doctors put you thru a lot of testing to cover a lot of possiblities. A lot of those test they did would show if body organs were not functioning. I would keep listening to them and go back in the month just as they said and be sure to express to them how you are feeling.Yes, its very hard to be young, outgoing, then being housebound. I go to Greece every year and when you said you drank a lot of Nescafe I am familiar with the caffeine in those...a lot (but oh so good) so I would think you would have to come off that and feel it.Since you seem to have doctors who just didn't say you had "stress" and did the whole testing like they did, I would listen to them. You can "match" your symtoms to fit most any illness but they are the ones that have actually examined you and tested you.......not us.
    agypsygrl 79 Replies
    • August 26, 2007
    • 10:21 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • "Another possibility...get your hormone levels tested."I was thinking the same thing, like adrenal exhaustion.
    birdie 40 Replies
    • September 6, 2007
    • 03:38 AM
    • 0
    Flag this Response
  • Apologies beforehand for my English, I live in Greece. I am wondering whether somebody could relate with me or have a different perspective on what I have been going through for the last month and a half. I used to smoke a lot and drink a lot of coffee on a daily basis (around 6 cups of nescafe), mainly due to my work which is very demanding and stressful. Two months ago, after having a coffee in the morning, I developed tachycardia and went to the hospital because of a feeling that resembled a panic attack. The cardiologist who examined me told me to quit immediately smoking and drinking coffee and put me on a beta blocker pill (Inderal) for 2 weeks. After a week or so, I started feeling really tired, to the extent that I could not walk for 10 minutes. I went to the hospital again and was told that it was either the pill which can have such side effects, or I was experiencing withdrawal symptoms from nicotine and caffeine. The doctor switched my medication but the symptoms remained and got even worse. There were days that I was so weak, that I could not get out of bed. As this thing would not go away, I was admitted to the hospital for a thorough check. As I am 32 and up to now quite healthy with no medical conditions or problems, my physician was quite alarmed that the fatique would not go away.In the hospital I had all sorts of tests (half of them I cannot even translate!!!), including all sorts of blood tests (they revealed no anemias, no problems with the thyroid, no deficiencies in nutrients, no HIV and other related diseases), on the whole, my exams were so good I could not believe it. I had also a chest and abdomen cat scan, a thoracic puncture and a myelogram, a stomach examination and a biopsy- they were all clean. My virological tests revealed that I had a type of a gland virus (something like mono) and while I was in the hospital, I was also diagnosed with a subclinical form of the Marfam syndrome, due to the fact that I have long fingers (arachnodachtylia) and a high palate-my heart ultrasound revealed no problems and I was told by the doctors that I have nothing to worry about, that it is a very minor form of the syndrome. The only advice I got re. the Marfan syndrome is to have a heart ultrasound every year, to follow up the condition of my aorta. I researched the syndrome a little bit on the Internet and found it quite alarming, but this contradicts what my doctors told me about the form (subclinical) of the syndrome that I have, that it's basically nothing. I don't know whether I should leave it at this or start looking into it into more depth.Anyways, almost a month and a half after my first symptoms, I am still on a sick leave and find it quite difficult to function on an everyday basis. I rarely get out of the house (still get tired very easily) and I find this whole thing very disturbing, as I am a very active and social person, nothing like this has ever happenned to me before. I have become very moody and irritable, but I associate that with the overall feeling of weakness and being at home, which makes me feel completely incompetent. So far, the doctors have come up with the following:1. Potential chronic fatique syndrome2. Fatigue due to the gland virus that I have, that needs to do its "cycle"-apparently there is no cure.3. Psychosomatic causes due to the extreme stress that I usually go through4. Withdrawal symptomsI feel better on the whole, but I feel weak at the knees and I feel the same weakness in my leg muscles. I occasionally have an upset stomach, too. I can't walk long distances and I am really frustrated because nobody seems to be giving me a concrete answer re. what's wrong, people are treating me a little bit in the sense "hey, get a grip, there's nothing wrong with you, your mind is just playing tricks on you". To be honest, I highly doubt that. One typical symptom of the Marfan syndrome is also leg weakness, so I am really perplexed that not a single doctor of mine seems to be making that association. They probably know better than I do. What the hospital neurologist told me is to come back after a month or so if the symptoms persist in order to have some more neurological and brain/sleep tests. What do you think I should do from now on? I just want a normal life back, I can't be on a sick leave forever!Any ideas, anybody? Should I listen to what the doctors say or should I go with my gut feeling??? Thank you for listening & Happy Easter!Hello Lenna,I, too, have suffered with debilitating fatigue. I was unable to work for 2 1/2 years due to an indescribable fatigue... and both of my sons are beginning to exhibit the same symptoms. We are still in the process of being diagnosed... however, I can share the following:1. Caffeine and tobacco intake are some of the ways in which people try to subconsciously heal themselves. Like dogs, we seek out the substances in our environment that our bodies need to stabilize. Coffee raises our blood pressure... so if you have chronically low (faintingly low) blood pressure like me, you might note a desire to drink pots of coffee and eat lots of salty foods. Coffee also contains the naturally occurring drug theophaline occassionally used in asthma management. Additionally, coffee robs the body of magnesium (an electrolyte needed to support over 300 metabolic activities)... and if you have a rare disease such that your body overproduces caffeine, it might be one way in which you are trying to compensate. Also, if you have a mitochondrial cytopathy, wherein your body is unable to produce enough ATP to power your brain, heart, and muscles... you may find that caffeine gives you a 'false' sense of energy. Regarding tobacco, I know that tobacco use can inhibit the imflamatory response related to inhaled allergens. Also, tobacco increases the body's manufacture of dopamine. One other item you might question is whether are affected by lactic acidosis... my son's lactic acid is normal in his blood, but 4x normal in his urine. Anyhow, I wish you all the best in resolving your fatigue-related issues.Paula
    Anonymous 42789 Replies
    • September 12, 2007
    • 01:16 AM
    • 0
    Flag this Response
  • Take a test to see if you have Adrenal fatigue. The test is done on your saliva and it the kit for this can be found at a naturopathic doctor's office. If you've been stressed, drinking coffee and smoking, you most likely have some sort of adrenal fatigue.
    Anonymous 42789 Replies
    • September 16, 2007
    • 10:54 PM
    • 0
    Flag this Response
  • Hi certainly understand your frustration, have had thyroid symptoms for years, blood work came back abnormal once and was put on synthroid, but next test came back normal and synthroid was stopped, finally because of swallowing problems, hoarse voice, and swollen glands, ent ordered ultrasound which showed many nodules on the thyroid, was given minimal dosage of levoxyl, even pharmacist was surprised but all doctors insist the nodules will not cause the other symptoms (extreme fatigue, muscle weakness, gastric disturbances, always hot, dizzines and shakiness, inability to lose weight, losing my hair). Have blood work done at least once a year that come back normal. Since I am diabetic, doctors usually want to give that or depression as the cause.
    bdkfam 2 Replies Flag this Response
  • Have you even considered you might have Lyme's disease? Have you ever been bit my a tick? had a rash? Lyme's disease brings on lots of fatigue.Another possibility...get your hormone levels tested.Keep trying different doctors. Possibly a osteopathic doctor or a nutritionist. If you know that something is wrong then keep looking for answers.I was just diagnosed with Celiac disease. This may be an option for you to look into. I am having difficulty breathing, I am tired, and I have migraines but my doctors think it is from a medication I was taking. I agree with this person who mentioned Lyme's disease. It is the most undiagnosed and misdiagnosed disease in the world. My neighbor's two daughters have it and they only saw the tell tale ring on one of the girls. Now the oldest is in her twenties and getting sicker and sicker. If she had gone on antibiotics immediately, she would be fine now. The younger one is doing ok but is tired most of the time. Make sure you get the Western Blot test and I have heard that there are many false positives as well as false negatives unless you send it to a company in California called Igenex. Good luck.
    Anonymous 42789 Replies
    • February 1, 2011
    • 03:41 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.