Do I have chronic fatigue syndrome?

Discussion in 'Fibromyalgia Main Forum' started by Critired, Nov 18, 2006.

  1. Critired

    Critired New Member

    Hi
    I am very scared. I have been feeling really bad for quite a long time now, it all started in May with a sore throat and sore eyes, and whenever I tried to do something physical I felt nauseous. I began having trouble with my stomach bloating, all medicines failed to help. I had an xray and it only revealed a hiatus hernia, causing reflux. I feel as if I have a bad hangover all the time, funny full feeling in my neck, numbness and tingling that started in my feet, now it has spread to my arms and legs, torso and even my face. I feel dizzy and imbalanced. Sometimes I have trouble feeling my feet when i am walking, and have to concentrate on where I am putting them. I can't concentrate without getting horrible headaches, cannot bear to be with a lot of people all talking, it makes me feel nauseous. All blood tests have come back normal, Doctor gave me a full exam, testing reflexes etc. and could find nothing wrong. I have near fainting episodes which get worse as the day goes on. Sometimes I feel as if my head is shaking. Is this Chronic Fatigue syndrome?
  2. sfrazier

    sfrazier New Member

    Critired that doesn't sound like any of the symptoms that I have or had when first dx'ed with CFS or Fibro. I would personally go to a different doctor and get a second opinion because from the sound of your symptoms I would be very scared if I had those. I'm not sure which type of doc you should go see but hopefully someone else reading this will be more informed then me. Good luck.......SueF
  3. Catseye

    Catseye Member

    That sounds like me the year before I got really sick. If I could go back in time and tell myself what to do and if I thought I would listen here's what I'd say:

    Start eating healthy. Don't think you know what's healthy. Google "healthy diet natural remedies". If you don't, you'll get the food pyramid which is mostly a lie. Look into liver cleansing and detox diets, too.

    Get an excellent vitamin and a separate mineral supplement from the health food store.

    Give up bad habits like smoking and drinking too much alcohol, sodas or coffee.

    It sounds like you've definitely got the beginnings of it. Especially when you go to the doctor and blood tests are normal and he can find nothing wrong. YOU know you have a problem and you'll have to do something before it gets worse. If it gets full blown, it won't be a matter of just going to the doctor, you'll have to find someone to carry you to one.

    The year before, I went to the doctor like this and he said I had bronchitis even though I wasn't coughing. He said everybody had it at the time and so he sent me home with antibiotics which, of course, aggravated it. I had bronchitis when I was 15, I know what it's like. I didn't have bronchitis this tiem. I was stupid to give in to him and take the antibiotics but hindisight is always so crystal clear, isn't it?

    I really had hepatitis c to start with and then I got cfs. Maybe you can get a doctor to start checking for viruses. It sounds dumb and "parental", but you have to take care of your body! Start now!! good luck, karen


    [This Message was Edited on 11/19/2006]
  4. Critired

    Critired New Member

    HI
    Thankyou so much for your message. I was interested in you saying you had been given antibiotics - in the past year i have been prescribed antibiotics 5 times!! The worst lot was when i had to take an industrial amount for a helicobacter infection in my stomach - they were 6 times stronger than anything i had taken before, along with powerful acid suppressants, and now i think they may have damaged my immune system. What I am really afraid of is the numbness, shakiness and tingling i am experiencing. I was beginning to think i had multiple sclerosis, as my b12 levels were normal, but as I said the Doctor could find no signs of this when he examined me, and said it would be most unlikely for me to get that at my age (55) Then I happened to read that it is sometimes found in c.f.s. sufferers, I read about one women who had even become paralysed. Also my blood pressure seems to be okay in the morning, then gets lower as the day goes on. I will look into what you said about diet, my eating habits have not been very good over the past year.
  5. sascha

    sascha Member

    BUT i also had many many courses of anti--biotics for many years before onset of CFS which i believe was part of the cause of CFIDS developing.

    VERY VERY IMPORTANT: you should be on pro-biotics big time to replace beneficial bacteria in your gut that the anti-biotics destroy. immediately get good pro-biotic supplement in a health food store. look in the refrigerated section, and get a product that has different types of probiotics in one bottle. there are capsules you can take, or liquid. maybe get advice in the store so you are sure to get a kind that covers all your needs and is highly recommended. this is truly very very critical for you. who knows, it could start alleviating some of your symptoms soon.

    please believe this (find information online if you're not convinced). probably your doctor wouldn't know anything about this, though.

    good luck- find out all you can as fast as you can- i had my CFIDS diagnosed at an alternative medical center through different kinds of testing. my regular doctor didn't find what the alternative center did. best of luck- sascha
  6. Critired

    Critired New Member

    Thanks for your message Sasha, I will look for a good probiotic tomorrow and begin taking them.
  7. dani78xo

    dani78xo New Member

    Everyone with CFS is different, but it doesn't really sound like a typical case of CFS to me. With most people I talk to, the main thing is the fatigue or cognitive dysfunction.

    You could talk to your doctor about it, though. They're a lot more reliable than any of us, because they see more cases of it and know how much it varies case to case.

    -Danielle
  8. TerryS

    TerryS Member

    Yes, yes, yes!!! I have had or currently have almost all of those symptoms. My throat and head hurt on a daily basis. Most days I feel like I have the flu. I tire very quickly. BUT, I have also had the numbness, tingling, balance and concentration problems. Thankfully, those got better after a couple of months, but no telling when they'll come back.

    I'm pretty much miserable day in and day out. I wonder what all labs your doctor has checked. So far, mine show:

    positive ANA, AMA, ASMA, ssDNA, chronic Epstein Barr
    very low levels of B-12 and vitamin D

    Besides being diagnosed with CFS/FM, I apparently also have an autoimmune liver disease (primary biliary cirrhosis) - we found out only because one of my docs ran the AMA which is a definite marker.

    I had been seeing my doc for over a year complaining of fatigue and dizziness and he wasn't doing a thing about it. I saw an ENT for my dizziness and he was the one that ran the Epstein Barr and others that led to my CFS diagnosis. From there, a rheumatologist ran the AMA only because the ENT had ran the ASMA which was positive. In other words, my ENT has added many years to my life because he was willing to run a few blood tests and get the ball rolling.

    Good luck in getting a diagnosis. I understand it takes years sometimes...mine only took 14 months of visits.

    TerryS
  9. shar6710

    shar6710 New Member

    Is your Dr treating your reflux?

    I have had most of the symptoms you have and was dx with CFS last year after being ill for 18 months.

    You might try printing off the CFS tool kit at the CDC website for your Dr., make an appt and take it with you. It has very good information that he/she can use.

    Good luck,
    Shar
  10. NightAngel

    NightAngel New Member

    I would STRONGLY suggest that you INSIST your dr perform the tests that the previous poster suggested: "MRI, thyroid test, hormone tests, nerve conduction tests, tilt table test"

    Most especially the MRI, and nerve conduction tests...(I am assuming your dr has already tested your thyroid)

    Contrary to many dr's belief, they are not god. Remember you have hired your dr to work for you- they're your employee. Sometimes you have to advocate for yourself.
  11. PVLady

    PVLady New Member

    For two years I had all sorts of problems including digestive. Poor appetite, nausea, bloating, anxiety, and "normal" blood tests. I just felt bad all the time.

    I also developed numbness and tingling in my feet and legs which I believe is from vitamin deficiencies - as a result of poor diet. During the time I was sick, I lost over 50 lbs because I could not eat much.

    After two years of misery guess what???? I was diagnosed with gallstones. It took a simple 10 minute ultrasound.

    I "did not" have stabbing pains, right shoulder pain, etc - which are some common symptoms.

    About one week ago, I had the gallbladder out by laparascopy. (That is a smaller surgery where you recover sooner).

    I am sooooo much better. Aside from recovering from the surgery, day by day, I am completely over the other symptoms.

    For two years I could barely eat. I ate no salads, and many other favorite foods. I could not tolerate the smell of food so did no cooking at all. My life was miserable.

    Since surgery I am now cooking already, eating in restaurant, and ordering salad first!! My anxiety is gone and I am sleeping much better.

    Please, just to make sure, ask your doctor to do a ultrasound to see if you have gallstones. If necessary, tell them you have pain right below your breastbone, or behind your right shoulder blade. (those of some symptoms, but not all).

    My surgeon said my symptoms were classic for gallstones but many doctors miss the diagnoses.

    This came on over years but got much worse in the past two years.

    When you have gallstones, you have a sick gallbladder. It is inflamed and can make your whole body feel sick. You do not necessarily have to have pain coming from the gallbladder, I didn't.

    When I saw the surgeon before surgery he knew where to push, right on the gallbladder. It really did not hurt, just kind of sore, but not really. You just need the ultrasound to make sure.

    I had went through many tests including a abdominal and pelvic CT scan with contrast, Endoscopy, Cystoscopy, you name it.

    If my original family doctor would have just ordered this simple ultrasound, I could have avoided the tests, plus had a life.

    Sorry for the rambling here... I hope you are feeling better and can find out what is wrong.

    As for me, I am kind of mad at my original doctor for missing the diagnosis...
  12. Critired

    Critired New Member

    Hi Wakemeup

    Thank you for your message, I looked this up on the internet, and have a printout to take to my doctor. The symptoms do sound very similar to mine, particularly the rapid onset of the paresthesia, the way it has spread all over my body within a few weeks, and the exhausted, flu-like feeling I have had.

    What also rang a bell was the fact that this illness causes fluctuations in heart rate and blood pressure, that has certainly a feature of my illness - my resting heart rate has been as low as 45 and as high as 105 all within 10 minutes, same with blood pressure, sometimes too high, then 10 minutes later too low.


    You say it can follow a stomach virus, I am now wondering if my stomach problems may have been due to this. None of the usual medications did anything to relieve the constant pain and bloating, which went on for weeks. However, the stomach problems disappeared, only for this numbness to come on a few days later.

    I have noticed in the past 2 days that my headache is lessening, also that my pulse rate is normalizing and my blood pressure seems to be getting more stable. Having read about the time course of the symptoms, I am hoping now that this is as bad as I am going to get - that I have the milder form. I still have the numbness and tingling, but it seems that that can take some time to diminish. Thanks again for your help.
  13. FOYBOYFOY

    FOYBOYFOY New Member

    i have similar issues, numbing and tinling, started in feet and moved to hands and arms. headaches and many many more fun symptoms. ive seen 10 doc and have 4 dx including cfs & fm. you need a mri(brain) for ms. see a rheumy and nuerologist. so were all scared to death when we first got these crazy symptoms and we are all still here. relax and take one day at a time, dont look to far ahead or you will freak out. thank GOD for each and ever sunrise & sunset, stay positive and dont look to far ahead. GOD BLESS FOY
  14. MelaC

    MelaC New Member

    Did you know it can take up to 8 years for a gallstone to form and for it to be diagnosed? I was amazed when I found this out, I have always been sickly. For the past 2 years I kept getting excruciating abdominal pains. I was first told I had a spastic colon when treatment for that didn't work I was sent for an endoscopy and they found nothing. When the pain returned a few weeks later I was treated for diverticulitis and was admitted to hospital and put on intravenous antibiotics. Two weeks later the pain was back worse than ever i felt as if someone had cut me in half. My hubby took me to the emergency room. They admitted me once again and put me on intravenous pain meds. It took a week for the pain to ease. On admission they did blood tests to check for infection and it came up negative, they did CT scans And xrays nothing came up they even did a gastroscopy, nothing came up. Just before I was discharged the surgeon treating me decided to redo some of the blood work and wo and behold I had an acute gut infection. He sent me for another CT scan but they could not see much due to my hip replacements. They sent me for a sonar and jackpot the radiographer found it immediately. I had surgery 2 days later and was told that it hadn't been functioning for months and was so seriously septic it was about to rupture. They also found a 2cm gallstone stuck in my bile duct.They removed it in June.

    I am so relieved it did not rupture. But as happened with me it can be missed by even the most meticulous of doctors. My GP told me in the space of 2 months 7 people were diagnosed all had had long term problems.

    I guess what I am trying to say is it is one of those things that can be missed and it isnt any ones fault. I am glad you are feeling much better.
  15. Critired

    Critired New Member

    Hi

    I am worried that you have low levels of vitamin b12, did you know that can cause a lot of the sympoms that you are having? In some people, even low-normal levels can cause fatigue and neurological problems, plus cognitive dysfunction, headaches, and constant general feelings of malaise. It might be worth while for you to try out some vitamin b12 injections, and see if they make any difference. Even then, it can take quite a while to get full improvement. You can also get sublingual methylcobalamin tablets, which is the type of b12 that your liver does not have to convert, and it is absorbed directly into the bloodstream through your tongue.

    I am now waiting to have an m.r. scan of my head and neck, plus some nerve conduction tests, just to rule out any possibility of tumors or lesions
  16. Empower

    Empower New Member

    I agree with Night Angel

    I think an MRI of the brain can rule out some things to help your doc determine whether or not it is CFS
  17. Critired

    Critired New Member

    Hi Night Angel

    I have had a normal full blood count test, plus all the tests for thyroid, diabetes, hormone levels, kidney function, b12 etc. and all came back normal. Also my neurological examination was completely normal.

    I am now booked in for an m.r.i. of the brain and neck, plus nerve function tests, and a follow-up appointment with a neurologist.

    Thanks for your advice.
  18. Critired

    Critired New Member

    Hi Wakemeup

    It seems I don't have Guillen Barre syndrome, as my reflexes are normal, and my doctor said that one of the symptoms of that disease is a diminishment in reflexes. Anyway thanks so much for your messages.
  19. Andrew111

    Andrew111 Member

    It sounds along the lines of Chronic Fatigue, and I suggest following the supplement suggestions others have made.

    But the standard protocol for Chronic Fatigue is to rule out other things first. Otherwise you can miss something very important. So I think I would want to hear from an infectious specialist and a neurologist. In my case, the neurologist ordered an MRI.

    Also, as I was being sent to specialists, they all seemed to think it was important to rule out heart problems. Not just as a cause, but also as a possible effect. So, tests that were more extensive than an EKG were ordered by various specialists along the way.
  20. woofmom

    woofmom New Member

    You may want to check your environment. The chemicals in fragrances have caused me to have the same symptoms. Artificial sweeteners and msg have also done the same.