Need advise .. Undiagnosed

Discussion in 'Fibromyalgia Main Forum' started by DaveH, May 24, 2003.

  1. DaveH

    DaveH New Member

    Hi Guys / Girls,

    Please let me apologise for the long post .. but i'm really looking for someone to give some advise on my problems.
    For 4 months I have been experiencing a wide variety of lovely symptoms. I have been to countless doctors, and had countless tests done all of which have proved negative. (these tests included - blood, urine, thyroid, hormone, low back MRI, abdominal MRI, back Xray, abdominal Xray, chest Xray, ECG etc etc). The only thing the doctors can say is it is all due to anxiety/depression.

    Symptoms :

    Jan 03 - On/off low back pain
    Feb & March 03 - Severe low back pain, hip aches, leg aches, burning pains in skin on legs/arms/chest/back, mild chills/shivering, sweating on hands/feet, lack of energy/motivation. These symptoms alternated on a daily, sometimes hourly basis. I now had it fixated in my mind i had something seriously wrong with (became very anxious/depressed & started to relate my symptoms to every disease / illness i could find on the internet .. all tests done were negative)
    April 03 - Same symptoms as Feb & March .. but with the added bonus of a week of digestive problems with abdominal bloating/pain. Was pretty depressed at this stage (i was also moving house + was trying to cope with the stress of running my home based business while feeling terrible) - Was put on Escitalopram (Cipralex) for depression/anxiety.
    May 03 - Low back pain now much better - almost non existent at the moment .. but the chills/shivering continue. I get aching in my legs .. like i have run a marathon & they feel really weak (but they are not actually physically weak). My temperature also seems to be a little down on normal for the past month (36.1 > 36.8 degrees C). I have virtually constant sweating on my hands & feet .. sometimes my legs also feel damp/clammy. Still feel very lethargic, and have episodes where i simply do not have the enthusiasm to get out of bed. I also have bouts of feeling hot & flushed .. all these symptoms still alternate on a daily or even hourly basis. My temperature is always just below normal.

    Can anyone with FM/CFS relate to this lot ? .. I seem to have reached the end of my doctors interest & have just been sent away with a diagnosis of anxiety/depression caused by the stress of my house move + work (i have worked 7 days a week for the last 4 years with no holiday). True, i am an anxious person ... & true, i do now do feel depressed with all the symptoms i've got .. but could FM or CFS be the underlying problem ?

    Any help / info would be greatly appreciated

    Dave, 30 (UK)
  2. MemoryLane

    MemoryLane Member

    We have many here from the UK and maybe a seasoned individual can guide you through or around your Public Health care system.

    Let them treat the depression, because it ultimely will get out of hand. It will help some of your pain and help you sleep a little better, plus it will show your doctors that you are willing to comply. Continue reading and gradually educate your doctors, until they are ready to acknowledge your other symptoms. You need to cultivate a good relationship, one that, in time, will make you feel more comfortable in addressing some of your other issues. It does take time, but you will get there eventually. If you get emotional, people stop listening to you and don't take you seriously.

    For the present - as for your digestive and bowel problems, this is most likely IBS, irritable bowel syndrome, which is made worse by stress - either external, from food intolerances/allergies (wheat and dairy are common), or too little/too much stomach acid. Malabsorption can occur with IBS, so you may not be getting full benefit of food and vitamin nutrients or your medications. I am assuming they checked you for GORD/GERD, you may also have a Candida yeast related complex. You can get some relief off-the-shelf and a great amount of benefit from a polyphasic digestive enzyme complex (with meals). Polyphasic means it works in both your stomach and in your intestine - this is important, because it helps restore normal gut function. Some probiotics with acidophilus (between meals) would also be beneficial and will help restore normal gut flora.

    Bromelain (from pineapple) acts as both a digestive enzyme with meals and an anti-inflammatory between meals. It is generally well-tolerated and can be obtained as a single ingrediant, usually in a gelatin capsule. Many people have received benefit from this alone along with the probiotics.

    The digestive enzyme complex (I also take Betaine Hcl for too little stomach acid) have been the best thing I have found to help myself and I feel the most beneficial of all the things I have done thus far. I have had NO IBS "inconveniences" since taking these.

    Hope this helps - wishing you well,

    [This Message was Edited on 05/25/2003]
  3. DaveH

    DaveH New Member

    Hi Spacee + MemoryLane & many thanks for your fast replies

    Spacee - I will ask a doctor to look into the hypothyroid theory you've suggested, even after my weeks of internet research i managed to miss that condition !

    MemoryLane - I haven't been checked for GORD/GERD or a yeast related complex .. the first doctor i saw labeled me as an anxiety case & related all my symptoms to it. Then i think (like Spacee said) all the rest of the doctors just followed his diagnosis .. just the easy option for them. I ended up having to pay for the MRI scans & Xrays (when i was worried about having a nasty disease/illness in the beginning) as the doctors refused to do them on the UK public health system. I somehow need to get them to listen to the fact that my symptoms go beyond anxiety/depression.
    You also mentioned food intolerances/allergies .. i haven't been tested for any of these either - so thats something else i will be asking the doctor about.

    Many many thanks for the replies

    Best regards

  4. Stillkicking

    Stillkicking New Member

    Hi Dave!
    It sounds like you have entered "The Twilight Zone" or the nightmare of CFS/FM. This is not a disease. It is a symptomology they put a name to. The disease or diseases which cause these symptoms are usually unknown or undiagnosed or known but not resolved.

    Most people who recover get well within the first year. This is why you must find out what your problem is now and the sooner the better.

    There are two conditions to pay special attention to:
    TICK BORNE illness - blood tests are available
    Unresolved chronic SINUS INFECTION caused by bacteria. You didn't mention any head symptoms like headache, postnasal drip, stopped up nose, sore throat etc... Was this because everything else hurts you more? When did it first began?

    What might help: multiple vitamin, iron, thiamine, lots of rest, good food and time.

    These are illnesses you doctor can treat. I hope you are feeling better soon.
  5. tansy

    tansy New Member

    In theory ME/CFS is officially recognised, in practice it depends upon the doctor. Even if recognised it can be poorly understood.

    In the UK advice has generally been to give anti-depressants, even though so many of us cannot tolerate their effects. Any antidepressant should be started in very low doses and built up gradually, these initial dosages must be lower than the levels at which treatment usually starts. Cognitive behavouur therapy is also being pushed, though they are now being more careful with severe cases. If you do have ME/CFS it's too early to start on this so if offered it bear in mind that you could be asked to push against this illness too soon. Recently there has been a call to provide pain relief.

    Get your GP to give your thyroid tests a really close check. Any lower levels in these DDs means there is a chance you will respond to treatment. Also your adrenal function. There's been loads of posts on low thryroid and adrenal insufficiency on this board. Use the box at the top of this page to search for them.

    Also as, advised before, check out candida, if this seems valid you can start doing something about it yourself. Be warned though docs in the UK dismiss this on the whole, I have one of the few GPs who doesn't.

    So sorry you are ill. It's always worse not knowing and not understanding, almost any diagnosis seems better than being dismissed with depression and anxiety when you know that's not the cause.

    Even if you only THINK it is ME/CFS then you need to do something about it now, pacing is the first step, secondly get any treatable infections treated. Diet and supps help too. Pat Palmer has posted some brilliant info on this as have others.

    It will all seem very confusing at first, take your time, chances are bells will ring when you see something relevant.

    Good luck


    [This Message was Edited on 05/25/2003]
    [This Message was Edited on 05/25/2003]
  6. tansy

    tansy New Member

    Hi Dave

    Usual problem, can never recall what I want when I want to.

    In the UK they recognise (well some docs anyway) both acute onset ME/CFS and a slow onset.

    Acute is easier to spot because the blood tests will show an acute infection in the earlier stages. Slow onset obviously does make diagnosis more difficult.

    Ask for a lymphocyte study, this will show if the levels of TH(helper)1 and TH2 have reversed: this is a common finding but not diagnostic. Also suppresor cells may be low, red blood cells abnormally shaped, and there well might be a few abnormal lyphocytes as well.

    These tests are not dianostic but they support the diagnosis. Also plantar reflexes are often reversed, your GP can check those.

    Both ME/CFS and FM tend to be a diagnosis of elimination. That's why a lot of docs don't like them.


    [This Message was Edited on 05/25/2003]
    [This Message was Edited on 05/26/2003]
  7. MemoryLane

    MemoryLane Member

    I thought to mention that there may possibly be an easy way to determine if you have Candida. Do you suffer from Athlete's Foot, Irritations or skin erruptions "elsewhere", crave sweets or foods with yeast in them? These include all fermented or brewed beverages and Root Beer, as well as anything with baker's yeast, too.

    Candida is the same fungus that causes Athlete's foot. If you have this, you only need to account for the years you have known about this to know how long you have had a yeast overgrowth. Candidiasis is the proper term for this condition. Candida is a part of our bodies natural intestinal flora, but it can get out of control from antibiotic therapies and high sugar and yeast diets.

    There are some natural remedies you can use to combat this, such as fresh garlic or one of the more effective supplements marketed under the trade name Kyolic. This is an aged garlic supplement that is "odorless" and produces less gastric distress than large doses of natural garlic.