Discussions By Condition: I cannot get a diagnosis.

Ready to end my life

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: Anonymous
  • November 29, 2006
  • 08:27 PM

30 something female with a very active lifestyle... at least before.
The last few years I have had episodes where I wake up and can barely move my fingers because they hurt so much.
The past year things have been much much worse. Some days I wake up and cant take the tpain. They are very mono like symptoms but I dont have mono ( I had it twice by the way).
All STD tests negative. Had an MRI of the entire spine and its all ok but the pain in the middle of my back feels like someone is running a needle up and down the middle of the spinal cord which usually happens when Im trying to sleep or first thing in the morning.
Have had severe chest pain for 7 months now and finally the cardiologist did an echo and gee whiz, im not imagining it, I actually have myocarditis... all tests come back negative.
Have had a nagging pain in up under the left side of my rib for TWO YEARS which is progressively worse and now starting to feel slight anxiety attacks that hit me when I least expect it. My elbows hurt so much I can barely use my arms. As I type my fingers are shooting pains.
The doc said last week he is convinced that I have sero negative Rheumatiod Arthritis but I dont have any deformities so is that possible¿
Yes my knees hurt sometimes and my ankles hurt but I am a massage therapist and I am in the gym everyday so that could be the reason.. I have not given a massage in 2 months because of this and I need to work so Im back to the U.S. tomorrow but I dont know how I am going to massage people when I am in so much pain myself.
I woke up today after an entire night of severe pain and thought, ok , today is the day I end this pain.. but when I looked over at my sleeping kids I knew I cant do this to them.
Can anyone at all please recommend a course of action¿ Thankyou ....

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28 Replies:

  • Smoke some pot? Just kidding, kind of... IT is obvious you need to do something.I know a food intolerence can cause progressive rhumetoid arthritis. Once I had figued out I have a problem with gluten, the doctors could suddenly, easily explain why my knees wanted to retire at age 24.Here's a link also that ties together gluten intolerence with myocarditis: "We screened the serum of 187 consecutive patients with myocarditis"... "Thirteen of the 187 patients were positive for IgA-tTG" http://circ.ahajournals.org/cgi/content/full/105/22/2611That's about five times the normal rate in the population, going by the restrictive biopsy conclusion. The blood conclusion suggests almost 10 times the normal rate. Oddly enough, it looks like gluten intolerence accounts for 9% of the myocarditis cases - and it also accounts for about 9% of all food intolerences/allergies. I wonder if problems with milk, corn, soy, nuts, etc. can also be associated with myocarditis? Perhaps its a cross-over condition, caused by a certain type of infection reacting to a certain type of immune system.Of course, it could be any immune disorder/infection combination..but I assume those are the ones they're testing for already.They'll probably also want to look for: (Known associations to myocarditis:)1) Viral infections: Coxsackie, Influenza, Rubella, Polio, Adeno and HIV have all been implicated.2) Bacterial infections with agents such as Corynebacterium, Rickettsia, Chlamydia and Coxiella.3) Protozoal infections: Trypanosoma Cruzi which causes Chagas' disease and is common in South America and Toxoplasma Gondii are both known to cause myocarditis.4) Radiation and poisoning can cause myocarditis (agents such as lead, radon? Get yourself AND your house tested)http://www.virtualgastrocentre.com/diseases.asp?did=51Stay strong. Do whatever you have to do to fight the pain. You have to get rest. I know its difficult if you're used to an active lifestyle, and society and money will pressure you to be active, but its one thing your body really needs right now. I know you have obligations, but they all have to take a second seat when life, health, and happiness is on the line.
    Azaral 152 Replies
    • November 30, 2006
    • 02:24 PM
    • 0
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  • You have kids; you need to be there (and remain there) for them. But you already know that. I just posted my first email at this site, which has to do with amazing hand pain. So I can relate to the first part of your post. Pain, more than anything else, has a way of getting to your heart, and I don't mean myocarditis. It breaks down your will. I really get that. The other person who responded to you has very very sound points. I hope you follow up on them. As to the joint pain, there are many different kinds of arthritis. I, too, tested negative to RA factor (or whatever they call it; who can keep track?? (:) So don't stop at just one or a few tests for arthritis. Also, if your doc is "convinced," then what is she or he going to do about it? That's what you need to demand, and I mean demand. You are paying them, so they need to work as hard as humanly possible to help figure this thing out. Think of yourself as their boss, because you are. You are in the driver's seat. You need their help, but you call the shots. I know how easy it is to feel overwhelmed, and also like there's no one out their who knows how you feel, or can help. So get mad, but not at life; at your condition. And let it start a fire under you to educate yourself, do the bazillion appointments it takes (I need to take that same advice) and get to the bottom of this. It WILL be figured out; you just need to take a deep breath, concsiously remember that there is beauty all around you, let it energize you, and then continue on. You can do it.
    Anonymous 42789 Replies
    • November 30, 2006
    • 06:53 PM
    • 0
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  • sweetheart, I do know how you feel - I have had the same problem for years now - no diagnosis - apart from rheumatoid arthritis - please don't give up! Your children need you, the same as mine did -find the strength to go on - I have - my pain hasn't gone away, and probably wont - no definitive diagnosis - doesn;t help I know, but somethiing happens - puts things in perspective I CAN COPE AND WILL and so can you! My thoughts are with you and my wishes that things will improve or that you will learn (as I have) to cope, trust me, YOU WILL SURVIVE and cope with this! God bless darling - I am not religious as such, but it is nice to know that people care, I found that anyway.
    Anonymous 42789 Replies
    • December 1, 2006
    • 10:13 PM
    • 0
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  • Chairopractic care has done wonders for me. I'd highly recommend it, but I know it is hard to find a good one.
    Anonymous 42789 Replies
    • December 2, 2006
    • 00:11 AM
    • 0
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  • Hang on, we are out here loving you....making the pot isn't a bad idea, I don;t smike anymore, but it does help relieve pain and soothe you...listen to your intuition, it will lead you to what it is...hang on...hang on...
    Anonymous 42789 Replies
    • December 3, 2006
    • 01:56 AM
    • 0
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  • I could cry that complete strangers would write anything... I never expected this. I feel a flare up coming on today so I know tomorrow is going to be difficult. To the person who said I have probably been tested for certain things, actually only have been tested for Lupus, bacterias or infections. All negative of course... so why do my knees hurt so much, my neck, shoulders, elbows are excruciating at times and my heart gallops with pain. The doc says not to keep up my aerobics but its the only moment of the day Im not feeling too much pain.What else could they test for besides lymes (after all i grew up in a wooded part of maryland which is FULL of it... but that was years ago).Could you have lymes and not know it until years later?I actually live in Panama the country and just come work in new york city. IN Bocas del Toro last year (a beatiful island) I came down with some virus and had to be hospitalized. They said it was dengue at first and then said they never really figured out what it was. It seems that about 5 months after that , the myocarditis started and the rest was down hill.If you dont have SWOLLEN joints but have severe joint pain, can it still be arthritis... even being negative in your blood? Oh, keep getting weird cyst-like balls behind my ears...Is there any hope I can know I will wake up one day without the pain?Last of all can someone recommend a rheumologist here in the U.S. in New York who would actually LISTEN?I hope you all are doing well with your own pain and I wish you all the best, god bless you and yours!!!!I registerd now, under "Lisy"
    Anonymous 42789 Replies
    • December 3, 2006
    • 03:52 AM
    • 0
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  • This could be a food allergy. I know people tend to think that allergies cause other symptoms, but the joints are not immune. WHEAT (gluten) could certainly be a culprit. I can eat very small amounts, but if I go over the threshhold my joints start hurting. SOY I know one person who if he eats soy his joints become inflamed. He wakes up completely stiff, almost unable to get out of bed.SOLANACEAE family (potatoes, tomatoes, eggplant, peppers etc.) years ago we had a family friend who had very crippling arthritis. My father had just read that in some people foods in this family could cause problems with joints. Our friend really loved her tomatoes and potatoes, but gave them up long enough to show immense improvement in her symptoms. Unfortunately, this was only a few weeks. She couldn't live without them and went right back to eating them and her symptoms returned. I wonder if she had stayed off these foods if she might hav fully recovered.One thing that sometimes happens is that the food you crave the most is often the food you are allergic to. I'd start there and see if you don't see some improvement in symptoms.
    Anonymous 42789 Replies
    • December 6, 2006
    • 08:16 AM
    • 0
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  • I know what you're going through with the pain. I've had near debilitating arthritis since I was a teenager. I've tested negative for the RA factor, don't have lupus, and show no signs of osteo athritis. In the end, after explaratory surgeries on my knees, hips and elbows, they called it non-specific rheumatoid-like arthritis. You know, that just means it looks like RA, acts like RA but without the deformity or the RA factor. Grrr. In the end, I not longer take any medications but instead strongly watch my diet. Aspartame and black pepper are crippling to me. I'm sore sometimes, but more functional than I ever was before. But it took several months of breaking down my diet: Today I eat only bread and milk, tomorrow I can add oranges, the next day I can add apples, the next day I'll have some chicken, the next some salt.... Yes, it was a long, slow process and I get real tired real quick of only being able to add one food type a day, but believe me, when the time came to add pepper, I was in extreme pain within hours. A few weeks later I tried a diet soda. OUCH! Then I tried a 'sugar-free' drink that had aspartame. Again, OUCH! The only common ingredient in the drink and the soda was aspartame.There are other things which affect me as well, but those were the two worst and ended up with my joints being so painful I couldn't even walk to the bathroom on my own (my poor husband, I was only 19!) and my lymph glands swelled to epic proportions. No pepper or aspartame, no swelling.So, I'd recommend going through your diet bit by bit. It really paid off for me in the end!
    Anonymous 42789 Replies
    • December 6, 2006
    • 07:18 PM
    • 0
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  • Get a doctor to press the tender points for Fibromyalgia to check to make sure you dont have that. from wikipedia "Although it is common in people with fibromyalgia for pain to be widespread, it may also be localized in areas such as the shoulders, neck, back, hips, or other areas. Many sufferers also experience varying degrees of temporomandibular joint disorder. Not all patients have all symptoms." "Tender points — there are 18 designated possible tender points (although a person with the syndrome may feel pain in other areas as well). During diagnosis, four kilograms-force (40 newtons) of force is exerted at each of the 18 points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered". Realise too that pain can be treated so if your doctor isnt helping you, seek out another. "They are very mono like symptoms but I dont have mono ( I had it twice by the way)." If you have mono like symptoms.. AS WELL as feeling VERY FATIGUED esp after excertion and have these symptoms really affecting your life, it is possibly you may have CFIDS (chronic fatigue immunity disfunction syndrome). With CFIDS one can get reactiving mono ... and also suffer from various pains like you describe.
    taniaaust1 2267 Replies
    • December 7, 2006
    • 01:19 PM
    • 0
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  • Smoke some pot? Just kidding, kind of... IT is obvious you need to do something.I know a food intolerence can cause progressive rhumetoid arthritis. Once I had figued out I have a problem with gluten, the doctors could suddenly, easily explain why my knees wanted to retire at age 24.Here's a link also that ties together gluten intolerence with myocarditis: "We screened the serum of 187 consecutive patients with myocarditis"... "Thirteen of the 187 patients were positive for IgA-tTG" http://circ.ahajournals.org/cgi/content/full/105/22/2611That's about five times the normal rate in the population, going by the restrictive biopsy conclusion. The blood conclusion suggests almost 10 times the normal rate. Oddly enough, it looks like gluten intolerence accounts for 9% of the myocarditis cases - and it also accounts for about 9% of all food intolerences/allergies. I wonder if problems with milk, corn, soy, nuts, etc. can also be associated with myocarditis? Perhaps its a cross-over condition, caused by a certain type of infection reacting to a certain type of immune system.Of course, it could be any immune disorder/infection combination..but I assume those are the ones they're testing for already.They'll probably also want to look for: (Known associations to myocarditis:)1) Viral infections: Coxsackie, Influenza, Rubella, Polio, Adeno and HIV have all been implicated.2) Bacterial infections with agents such as Corynebacterium, Rickettsia, Chlamydia and Coxiella.3) Protozoal infections: Trypanosoma Cruzi which causes Chagas' disease and is common in South America and Toxoplasma Gondii are both known to cause myocarditis.4) Radiation and poisoning can cause myocarditis (agents such as lead, radon? Get yourself AND your house tested)http://www.virtualgastrocentre.com/diseases.asp?did=51Stay strong. Do whatever you have to do to fight the pain. You have to get rest. I know its difficult if you're used to an active lifestyle, and society and money will pressure you to be active, but its one thing your body really needs right now. I know you have obligations, but they all have to take a second seat when life, health, and happiness is on the line.Keep taking the pain medication --- take anti-anxiety medication also if you have to and keep fighting to get more tests done, more opinions, more referrals --- also keep your hope up --- I understand as I am in a similar situation but with different symptoms --- am reaching out for as much help as possible, keeping hopeful and staying out of pain.
    Anonymous 42789 Replies
    • December 12, 2006
    • 07:45 AM
    • 0
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  • I felt the same way for a long time. I kept telling myself , this can't go on much longer, someone knows what's causing this pain. I had to believe help would come. After 13 years of chronic groin and back pain, 13 doctors, urologists,chiropractors and "specialists"...I was told about a pain management program.They believed how much I had suffered and would help! We worked on severalcombos of pain & antidepressants to start. Once the pain was controlled we started looking for the underlying cause of the pain. Long story short... A youngdoctor just out of school diagnosed me w/ Avascular necrosis, (AVN). My bonesand joints were dying. The delayed diagnosis caused my hips to collapse. Thatwas the cause of my groin pain. I had my r-hip replaced on Nov. 15 , the l-hip will be done shortly. I believe you will also see brighter days , you can overcomethis, you can perservere! Remember... someone out there knows what's causingyour misery, you'll find him (her). Pray!
    Anonymous 42789 Replies
    • December 12, 2006
    • 09:01 AM
    • 0
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  • I have alot of the same symptoms as you. I have been sick for the past year. I went to see my GYN a few weeks ago, and pang.. I got hit in the face with a positive chlamydia test. I have had it in my body for years. (at least 5) and I have been having chronic pain like you. I dont know if you have had it, but if you did and were treated with it, you could still be sick from it. Chlamydia can turn into PID and in turn perihepatitis. You get reactive arthritis/ reiters syndrome from it as well. It might be worth looking into.
    Anonymous 42789 Replies
    • January 1, 2007
    • 00:39 AM
    • 0
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  • I am in a similar situation. I have been diagnosed with mono recently, but have had two major bleeding events (in July and September 2006) where there was siginificant blood in my stool. (Bright red.) The doctors have been less than helpful. The one who did my colonoscopy thinks it is hemmorhoids. Of course, I think he is being naive. Today I have had a resurgence of pain and have been online looking for answers. I am not impressed with American medicine or doctors, although they have done their best. From time to time I have thought about ending my own life. It has been difficult finding and keeping a job and paying all of my bills. I just don't know what is happening with my life. I really don't think I'll be around in six months.-- Aaron
    Anonymous 42789 Replies
    • January 1, 2007
    • 06:49 AM
    • 0
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  • As was mentioned before, you could have fibromyalgia, it often onsets after a viral infection, car accident, or in my case, years of dibilitating chronic pain caused from a spinal defect. I have mentioned before an excellent book on fibromyalgia, and chronic fatigue, you can probably get it at your local library. This book is an excellent source as it was written by a doctor who has fibromyalgia and chronic fatigue syndrome. The book is called: Fibromyalgia & Chronic Myofascial Pain Syndrome A SURVIVAL MANUAL by Devin Starlanyl, MD, Mary Ellen Copeland MS, MA in this book they describe as one of the symptoms, (besides the severe leg, back, shoulder pain) Heart attack like pains, rapid heartbeat, and/or fluttery heartbeat, which can actually be caused by pectoral and sternalis trigger points. Hope this helps.
    Anonymous 42789 Replies
    • January 2, 2007
    • 09:56 PM
    • 0
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  • One more thing, from last post, as one who has had to live with debilitating pain for over 30 years, my heart goes out to you. I know what it is to not be able to work because of severe hand pain, and elbow pain. Please keep being a 'squeeky wheel' with your doctors. Insist on seeing a pain specialist, this is someone who deals specifically with treating chronic pain, which you have as you mentioned dealing with pain under your ribs for 2 years. Have you had an MRI? It will help to rule out nerve causes for your pain. One of the things that is important is that you get relief, this is imperative for your state of mind, and also for the future in regards to pain management control. If you cannot get any more help from doctors, do not be afraid of seeking alternative medicine relief. I go to a Chiropractor once a week, after asking my specialist if there was any reason I couldn't go, he said, "no, but I wouldn't waste my money on those quacks." the first one I saw didn't help me, the second one I saw has made my life so much more bearable. He has given me back mobility, and I function quite well, (still can't work, but the pain rarely keeps me awake any more) You might also benefit from a good acupuncturist, as they can work wonders with hand and arm pain. You are so right in thinking of your kids, they are such a blessing. They need you as there is no one else in the world who can love them like you do. Blessings and praying for you. PJJ
    Anonymous 42789 Replies
    • January 2, 2007
    • 10:08 PM
    • 0
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  • I was so happy to hear the last post mention alternative (I prefer to call it complimentary) medical approaches as these treatments can work wonders. I am an acupuncturist and see a variety of patients with lots of pain and "mysterious" undiagnosed syndromes. To me, it doesn't matter what they are diagnosed with as Traditional Chinese Medicine has it's own diagnostic methods. We treat the whole body and there are many different causes of pain. I have had patients come to me who are on oxycontin, oxycodone, morphine - you name it. And they STILL have lots of pain. Acupuncture not only helps with their pain, but it improves their sleep, digestion, emotional state, etc... To find an acupuncurist near you, please go to www.acufinder.com and type in your zip code. Give it a chance - it may take several treatments before you see a dramatic change. Best of luck to you.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 2, 2007
    • 10:33 PM
    • 0
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  • You may look into getting tested for Lyme Disease, even if you've been tested before it can come up as a false negative, since it is a bacterial infection and does not always appear in the sample of blood they take. I'm no doctor, but I recently watched a medical show where a girl talked about symptoms similar to yours that she had for years, debilitating pain, especially in her fingers and legs. The test is a good thing to take, since Lyme disease can lead to heart problems if it is left untreated. *best wishes* --Kade
    Anonymous 42789 Replies
    • January 3, 2007
    • 04:55 AM
    • 0
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  • I can emphasize with how you feel. I have similar symptoms and have desperately been searching for the reason. Last night (Jan. 2, 2007) on Medical Mysteries, a girl had your exact symptoms. She had been tested for Lyme disease several times with a negative response. Later, a more understanding doctor, took three more blood tests and sent them to different labs. She then tested positive. Evidentally, it can be missed because the bacteria (or whatever it is) may not have been captured in the vile.I would look up doctors that treat Lyme disease. If you are like me, you are tired and greatly discouraged with doctors not searching for what is wrong and saying you are fine. Like anyone would choose to live in agony and miss out on everything.I keep thinking myself that I don't want to live another day. I've lost everything and it is a lonely and desperate feeling, especially when you physically can't fight to find the reason any more.Keep trying and I will too.I'm so sorry for your illness. I hope you find what is wrong and you get some relief really soon!!!Lindsay
    Lindsayx12 29 Replies
    • January 3, 2007
    • 05:21 AM
    • 0
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  • I'm not a doctor, but my advice is to go to a rhuematologist and ask him or her to check you for fibromyalgia. It may not have anything to do with your heart, but it may have something to do with all of your pain.
    Anonymous 42789 Replies
    • January 3, 2007
    • 05:33 AM
    • 0
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  • Hello,I'm sorry that you have such a painful condition. I think you must not give up! Your kids need you!One of your questions was -- "If you dont have SWOLLEN joints but have severe joint pain, can it still be arthritis... even being negative in your blood?" There are several types of arthrites that are sero-negative (the rheumathoid factor is negative). Usualy the joints are suposed to be swollen. Do you have fever, or weight loss. Did they find any changes at radiographies (for joints I mean)?I think I have more questions then answers, but they might help.How were your inflamatory tests (ESR, CRP) and the blood count?Do you use any pain-killers? or antiinflamatory drugs? Do they help? Did they treat the miocarditis (are you still feeling fatigue?)Did you look for antibodies for gluten intolerance disease? It seems to me that Azral was well informed.Again, please don't give up!
    Anonymous 42789 Replies
    • January 3, 2007
    • 07:16 PM
    • 0
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