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    Default Not sure where to begin on intro..

    Hello everyone,

    My doctor ran tests on me two weeks ago. He was testing my thyroid as well as other tests I cannot remember and also wanted to do an ANA he said to test for Lupus. I had never been tested and I have had so many problems since 2006. I have chronic back pain, neck pain and headaches. I have had many other symptoms over the years that led a Dr in 2007 to tell me I had Fibromyalgia. I had chest pain when breathing or bending over, unable to eat well due to hernia and GERD, pain mentioned above as well as swelling of hands and feet, dizzy, always going into a daydream mode, memory problems, concentration problems, confusion and unable to have normal conversations due to not able to say what I am thinking, fatigue (which is horrible the last 4 months). I never feel rested. Jaw pain and popping, IBS, sick to my tummy and abdominal pain and many more things. I have progressivly just got worse since then. I am not sure how to take the news, as the ANA came back positive. My dr. said he had asked for a count as well on the ANA and they didn't give it to him so I have to do more bloodwork. Not sure what that means. I also recently found out from my two doctors that my pulse has been high the last few months and irratic.

    In 2007 the Dr ran an RF test that came back high. He sent me to a rheumy that didn't do hardly anything except say all my probs were from Fibromyalgia. I tried his treatment for it but continued to get worse. I knew my back probs weren't due to the FM because I had a spinal fusion in 2002. He wouldn't do any other testing so I moved on. Went to an orthopedic dr that in turn did MRI on back and sent me to a pain Dr. Nothing else has been really address other then the neck pain and headaches.
    Would love any input anyone can give me.
    Last edited by cruizon2005; 03-14-2011 at 12:33 PM.

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    Hello cruizon,
    Welcome to the WHL and it's lovely to have you with us.
    Well i have thyroid trouble but not been diagnosed with fibromyalgia but refering back pain and chest pain i have all those which are connected to the Lupus and the diseases i have below, as my muscles around my lungs are swollen and the pain is terrible, my joint's are swollen, i also get very bad muscle spasms, it's such a terrible disease for us all and if they find out you have autoimmune disease, that can give you other diseases linked to lupus plus if you get an infection instead of your body fighting the infection it fights your own body.
    When they test your bloods you most likely will never get a positive reading straight away as it makes the bloods fluctuate, where you could have something else and the reading comes in negative.
    All the symptoms your suffering nearly all of we have and your ANA being postive is Lupus as my ANA & ENA are positive and high in readings.

    I used to have the jaw pain and popping and was refered to ENT and they x-rayed my jaw and i now have TMJ disease and you get that as well with lupus.

    It will be nice getting to know you.
    Hugs Terri xxx

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    Information on FIBROMYALGIA to help to understand the condition more.

    What causes fibromyalgia?
    The cause is unknown. Research indicates there is disturbance of deep sleep in people with fibromyalgia and a special test looking at brain waves called an electroencephalogram (EEG) can detect these changes.

    People can develop fibromyalgia if their sleep is disturbed repeatedly. Therefore anything that causes sleep problems may eventually lead to it, eg people with arthritis may develop fibromyalgia because the pain and stress of that original condition may have disturbed their sleep pattern (this is called secondary fibromyalgia).

    Emotional upsets and depression may also bring about fibromyalgia.

    In some patients the onset of fibromyalgia can be traced to a recent trauma or accident. This is called reactive fibromyalgia.

    The problem with fibromyalgia is that once the complaints start, the continuing sleep disturbance can result in a vicious cycle of pain and distress. This can lead on to depression.

    Research indicates that fibromyalgia may be linked to a lack of growth hormone production by the brain or to a lack of exercise.

    Who is at risk?
    As many as 3 per cent of the population have fibromyalgia, with 10 times more women affected than men.

    Fibromyalgia has some similarities with chronic fatigue (post viral) syndrome or ME (myalgic encephalomyelitis). However, unlike fibromyalgia sufferers, those with ME may have had a preceding viral infection.

    ME patients feel less pain but are more tired and lethargic.

    What are the symptoms of fibromyalgia?
    The aching can affect almost all of the body and sometimes be bad enough to affect your personal life.

    The sore points over the body are noticeable in specific areas, such as on the outer side of the elbows, top of the shoulders, upper part of the front of the chest, inner side of the knees, etc.

    For a definitive diagnosis to be made, many experts say there should be at least eight tender sites present on the body.

    People suffering from fibromyalgia may look well despite feeling miserable. Patients often feel worse when they wake up, as if they have slept poorly, but may not improve as the day goes on.

    Tiredness can also fluctuate. Patients may lack stamina making it difficult for some to do a full day's work, household chores or even shopping.

    Other symptoms include a sensation of poor circulation or an apparent feeling of swelling of the hands and feet – although this does not actually happen.

    Tingling and numbness in the fingers and toes with a feeling of restlessness in the legs, particularly at night, can also occur.

    Patients often feel irritable, down or even weepy. They may suffer from headaches, poor concentration or lack of memory, irritable bowels syndrome (loose motions, cramps, bloating) or bladder problems (need to urinate frequently).

    Women can also suffer painful periods.

    How can fibromyalgia be diagnosed?
    There's no single test, such as a blood test or X-rays, to help in the diagnosis.

    The doctor may suspect the condition from the symptoms in the absence of any structural damage, inflammation or swelling of the joints.

    The presence of sore areas on the body along with a history of undue tiredness and sleep disturbance can help the doctor to make the diagnosis.

    Those bordering on chronic fatigue syndrome or ME may occasionally show evidence of recent or past infection from blood tests, such as glandular fever or some other viral infection.

    Doctors usually ask for several blood tests or even X-rays to rule out other likely causes that can sometimes look like fibromyalgia, eg underactive thyroid disorder.

    What else could it be?
    The following conditions sometimes cause fibromyalgia-like complaints and need to be excluded by X-ray, physical examination and laboratory tests.

    Underactive thyroid gland.
    Polymyalgia, an inflammatory condition affecting mainly those over 55. These patients, unlike fibromyalgia patients, have an elevated ESR (erythrocyte sedimentation rate) on blood tests.
    Patients with an immune disorder called Sjogren's syndrome are frequently tired with widespread aches and pains and may therefore be confused with fibromyalgia. But these patients also suffer from dry, gritty eyes or dry mouth and glandular swelling. Blood tests will help confirm Sjogren's syndrome in these individuals.
    Like Sjogren's syndrome, other conditions – such as rheumatoid arthritis or lupus – may initially look like fibromyalgia. But after some months the true cause becomes more obvious and tests can then help diagnosis and rule out fibromyalgia.
    How does it progress?
    Occasionally, the condition settles down after months or even years, but it usually continues long term.

    People with fibromyalgia can be reassured that it will not cause any permanent joint or bone damage or lasting physical disability. They're at no greater risk of developing any form of arthritis later in life.

    What treatment is available?
    While there's no cure, a lot can be done to improve the symptoms – especially with the help of the patient's family and the family doctor.

    Painkillers of various types, starting off with the simple ones such as paracetamol (eg Panadol) may be helpful. Stronger ones containing codeine should only be used when simple painkillers have had a fair trial and proved ineffective.

    Non-steroidal anti-inflammatory drugs (NSAIDs), like ibuprofen (eg Nurofen), may be helpful – but they are best used only when simple painkillers fail because these medicines can often cause side-effects, such as stomach ulcers or other problems.

    When one or two areas are particularly sore – such as the outside of the elbows, side of the hip or the shoulder – a local anaesthetic injection mixed with corticosteroids may be helpful.

    A splint or neck collar should only be used for short periods to obtain relief – prolonged use is discouraged as this can cause stiffness and muscle weakness.

    Sleep disturbance is a major problem, but sleeping tablets are best avoided because they're habit forming.

    Antidepressants can be effective, even if the person is not truly depressed, by improving sleep and breaking the vicious cycle of sleep disturbance and pain.

    Amitriptyline and fluoxetine (Prozac) are two commonly prescribed antidepressants in fibromyalgia. They do not help immediately, and it takes at least two or three months to decide whether they are beneficial.

    Amitriptyline must be started at a low dose and slowly built up to the required level.

    More recently, medicines such as duloxetine and pregabalin have been found to be beneficial, whilst others have failed. Trials have also shown that there's real improvement from cognitive behavioral therapy (CBT).

    Good advice
    Most people learn to cope with fibromyalgia.

    Patients are often encouraged to do regular aerobic exercises or swimming to improve physical fitness. Relaxation and regular exercises will help by making the sleep pattern more normal. Routine attendance at a physiotherapy department is unnecessary but initial advice from a physiotherapist is useful in deciding which exercises to do.
    Patients should avoid certain medications that can adversely affect some of the body's systems . These include nasal decongestants, excess alcohol, tea or coffee, especially late in the evening.
    Stress management, healthy eating and attempting to maintain an ideal weight are also beneficial. A special diet is not necessary.
    Prescribed medication should continue to be taken. If this has unacceptable side-effects, they should be discussed with a doctor.
    Let family members know of the condition, so they can provide support if necessary.
    What can your doctor do?
    Your GP can provide support and advice.

    Complementary therapies, including acupuncture and osteopathy in particular, may be helpful and your GP may be able to guide you in your choice of complementary practitioner.

    What is the outlook for fibromyalgia patients?
    Although a small number of patients have short-lasting complaints, the majority may continue to suffer from the symptoms for months or even years.

    However, most patients learn to control their condition. Some help can be sought from fellow suffers and support groups.

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    Quote Originally Posted by cruizon2005 View Post
    Hello everyone,

    My doctor ran tests on me two weeks ago. He was testing my thyroid as well as other tests I cannot remember and also wanted to do an ANA he said to test for Lupus. I had never been tested and I have had so many problems since 2006. I have chronic back pain, neck pain and headaches. I have had many other symptoms over the years that led a Dr in 2007 to tell me I had Fibromyalgia. I had chest pain when breathing or bending over, unable to eat well due to hernia and GERD, pain mentioned above as well as swelling of hands and feet, dizzy, always going into a daydream mode, memory problems, concentration problems, confusion and unable to have normal conversations due to not able to say what I am thinking, fatigue (which is horrible the last 4 months). I never feel rested. Jaw pain and popping, IBS, sick to my tummy and abdominal pain and many more things. I have progressivly just got worse since then. I am not sure how to take the news, as the ANA came back positive. My dr. said he had asked for a count as well on the ANA and they didn't give it to him so I have to do more bloodwork. Not sure what that means. I also recently found out from my two doctors that my pulse has been high the last few months and irratic.

    In 2007 the Dr ran an RF test that came back high. He sent me to a rheumy that didn't do hardly anything except say all my probs were from Fibromyalgia. I tried his treatment for it but continued to get worse. I knew my back probs weren't due to the FM because I had a spinal fusion in 2002. He wouldn't do any other testing so I moved on. Went to an orthopedic dr that in turn did MRI on back and sent me to a pain Dr. Nothing else has been really address other then the neck pain and headaches.
    Would love any input anyone can give me.
    I am really sorry that you are going through all of this. Please keep in mind that a positive ANA can be from many things, not just Lupus. Many people with Lupus also have Fibromyalgia and the combination is difficult however some doctors (possibly like your old one) do not really understand how Lupus or other AI diseases are diagnosed so they toss the Fibro name on it and send you away.

    It is good that they are looking into this. I am going to post a link here to a thread in the Newly Diagnosed section that tells you how Lupus is diagnosed. Please remember that these things do NOT all have to be happening at once. These things are cumulative. If you had a malar rash 6 months ago and you have mouth ulcers today you don't ignore the fact that you had the rash even though it is gone now. Too many doctors don't even understand that and therefore too many people are waiting years to get diagnosed because of it.

    I know this is a scary time but know that we will be here for you while you go through all of this. Please make yourself at home because you are now a part of the WHL family and that means you are no longer alone in this
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    hi, i have lupus and fibro.
    the symptoms are basically identical.
    the difference is that one(lupus) is caused by inflamation of the joints, and the other (fibro) by dehydration of the joints.

    very non technical talk.

    you can have both. it unfortunatelly makes it harder (BUT NOT IMPOSSIBLE) to treat.

    talk to your rhummy. there is good medications that can work on both.

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    Hi cruizon,

    How are you feeling today? and i hope you've not been suffering to bad.

    Terri xxx

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    I am having one of those, it is time to go take a shower and bawl, days. I am overwhelmed with trying to deal with our cobra insurance amoung other things. I feel like everything we are going through is my fault. just an overwhelming day

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    Quote Originally Posted by cruizon2005 View Post
    I am having one of those, it is time to go take a shower and bawl, days. I am overwhelmed with trying to deal with our cobra insurance amoung other things. I feel like everything we are going through is my fault. just an overwhelming day
    OHHH do you sound like me last year. I am the only provider in my home and I was "let go" at work last april because I was unable to return to work. I was given 3 months of short term leave but the long term that I paid for was not given to me. I cried most night because what had I done to my family? There is no way I can keep up with this car payment and we already lost the house. My daughter is gonig to be so embarassed and on and on. I would feel sick to my stomach and wait for my daughter to go to bed so I could cry uninterupted. It was all my fault. Look what I have done to my family!

    It is going to sound funny but the best thing that happened to me was having my car repossed. It was the last step for me. Once it was gone I looked around and said" well, so much for my credit. One big payment out of the way". It allowed me breathe and actually move from the cloud of depression to a place of acceptance. I felt free. I still had no money and no insurance but if things got really bad I would go to the ER. They have to take you no matter what. I have filed for SS/Dis and I am still waiting on that but it is amazing what you can live without and do it happily.

    We don't have cable anymore. We have antenna TV and there are abot 45 channels on there! (who knew!). My daughter and I both watch TV in the living room now. The TV thing actually worked to give us more time together! We switched cell phone companies to one cheaper. We got a "magic jack" for our home phone and it is 29 bucks a year. None of these things would have happened early on. None of them would have happened when I was in that place of utter desperation. I guess that is what I am trying to tell you. You won't always be in that place. It does get better even if it doesn't get better.

    We are all here for you and if you ever want to talk privately feel free to PM me if you want . A special hug to you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    i also was the only bread winner in our family.
    my wife was already on disability.
    we lost our house car ......................

    it also was the best thing.
    i went bankrupt.. (still am)

    without all the stress, life does look better and easier.

    sometimes we need to stop and let our mind catch up to where our body is.

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    Quote Originally Posted by cruizon2005 View Post
    I am having one of those, it is time to go take a shower and bawl, days. I am overwhelmed with trying to deal with our cobra insurance amoung other things. I feel like everything we are going through is my fault. just an overwhelming day
    Hi Cruizon,

    Sorry to hear your having such a bad time and i bawl away like you most of the time and after 2 solid hours of it, always notice i've got no where.lol
    I do wish you all the best though with dealing with the insurance besides other things.

    Terri x

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