Discussions By Condition: I cannot get a diagnosis.

Doctors say I'm perfectly healthy but I'm obviously not! Help!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Giantsteps
  • August 13, 2008
  • 09:10 PM

Hi I've been seeing doctors for years now because I am constantly tired, I could sleep all day if I could, given the opportunity, I can sleep 20 hours straight and still be tired! I am a 26 year old female, who exercices regulary, eats extremely well, doesn't have a stressful job, takes multivitamins and omega-3 every day and I sleep at least 8 hours a night! So how can this be??? I've been recently reffered to internal medecine, I was so happy, I really had hope that they would find my problem. But no, the doctor saw me, said he would take some blood tests, test my thyroid and test my urine but that they would probably not find anything and that most people in my situation will be tired for ever!!!! What kind of answer is this?? How am I supposed to have kids when I don't even have the energy to cook dinner??? Everytime I see a new doctor they immediately say depression, I'm so sick of this, I was finally reffered to a psychiatrist and I am not depressed...just very very sick of feeling this way!!! Anyways here are my symptoms:

Extemely tired;
Constipated;
Frequent headaches;
Not able to concentrate;
Very bad memory;
Hyperactive bladder;
Jaw pain;
Mood swings.

Does this sound familiar to someone?? Please help, every day is a struggle.

Thank you.

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10 Replies:

  • sounds like a sleeping disorder. My uncle, for 10 years, was always sleepy. He finally had a sleeping study done and turned out to have sleep apnea. I also have it. I was in denial for a long time. Ask your doctor (I think you need a new one) to give you a referal to have a sleep study done asap.some symptoms are excessive daytime sleepiness, having problems with memory and concentration, feeling tired and experiencing personality changes, morning or night headaches. to name a few.
    Anonymous 42789 Replies
    • August 14, 2008
    • 03:11 AM
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  • I feel for you :)Frustrating, Doctor's have no idea. Unless someone goes through something similar they have no clue what life is like. The only little bit of advice I can offer is perhaps try alternative doctors......I'm thinking of you :)Samanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies
    • August 14, 2008
    • 07:50 AM
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  • sorry i hate to say this but you may finally have the answer you seek. It sounds like chronic fatigue syndrome (CFS) .. ever the hyperactive bladder is often a symptom of it, (thou a lesser known symptom than the other very common symptoms for it which you have there). I'd say check out sleep apnea.. but then that doesnt cause hyperactive bladder and constipation (i have that with the CFS) .. and jaw pain...so it's pointing more along the lines of you having CFS rather than something like sleep apnea............. http://www.cdc.gov/cfs/cfssymptomsHCP.htm "As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities. A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:cognitive dysfunction, including impaired memory or concentrationpostexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exerciseunrefreshing sleepjoint pain (without redness or swelling)persistent muscle painheadaches of a new type or severitytender cervical or axillary lymph nodessore throatOther Common SymptomsIn addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include: irritable bowel, abdominal pain, nausea, diarrhea or bloatingchills and night sweatsbrain fogchest painshortness of breathchronic coughvisual disturbances (blurring, sensitivity to light, eye pain or dry eyes)allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noisedifficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)psychological problems (depression, irritability, mood swings, anxiety, panic attacks)jaw painweight loss or gain " ............http://wwcoco.com/cfids/bernesx.html "Bladder/prostate problems, frequent urination: 20-95%" of CFS people have that issue.
    taniaaust1 2267 Replies
    • August 14, 2008
    • 11:19 AM
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  • Wow Tania, this sounds like it might be it! You said you have it, how were you diagnosed? Is there a specific test? Are you being treated? If so are you feeling better? Sorry for all my questions but I know that most doctors don't believe in chronic fatigue or they think it's psychological so I'm trying to see if there is a specific test I can ask for. Thank you for help!!!! I'm so desperate!
    Giantsteps 3 Replies
    • August 14, 2008
    • 11:30 AM
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  • Wow Tania, this sounds like it might be it! You said you have it, how were you diagnosed? Is there a specific test? Are you being treated? If so are you feeling better? Sorry for all my questions but I know that most doctors don't believe in chronic fatigue or they think it's psychological so I'm trying to see if there is a specific test I can ask for. Thank you for help!!!! I'm so desperate! Sorry, thou you probably do know your diagnoses now.. the news isnt all that good esp if you've been ill for over 2 yrs (where as then there is much less chance of recovery). Ive had it for 12 yrs now, like many with it, I did go throu a period of remission from it for a while but then it was triggered off again.. Im now at 37 yrs.. on full disability support due to it as I cant work at all and may never be able to again. In my case Ive had it severe.. at my worst when i was 26 yrs, I was completely bedridden for 9mths and having to be cared for, i couldnt even walk, (all cause I kept on trying to push myself throu the illness.. so it became far worst). Now I have so many dysfunctions in my body due to it (I now get 80+ different symptoms with it). 25% with it end up bedridden or home bound. It is a very serious illness to have, they say now it can be bad as late stage AIDS or MS or congestive heart failure. It is very rare, but some even do die from it. It is extremely important for anyone who has this illness to find a doctor who knows about it for support!!! Unfortunately even the best doctors still dont know much about it and there is a HUGE amount to know about it as it can affect so many different body systems and it can be a very confusing illness.. it's also an illness which up till recently, governments havent even bothered putting money into studying it. (They are starting to now thou!! As they know it's a real illness now and not something in our heads. The American Government has now put money into doing some big studies on it) http://www.cdc.gov/cfs/cfsbasicfacts.htmRecovery from CFSCFS affects each individual differently. Some people with CFS remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symptoms.Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up. However, full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission.Possible Causes of CFSDespite an intensive, nearly 20-year search, the cause of CFS remains unknown. Many different infectious agents and physiologic and psychological causes have been considered, and the search continues.Much of the ongoing research into a cause has centered on the roles of the immune, endocrine and nervous systems may play in CFS. More recently, interactions among these factors are under evaluation.Genetic and environmental factors may play a role in developing and/or prolonging the illness, although more research is needed to confirm this. CDC is applying cutting-edge genomic and proteomic tools to understand the origins and pathogenesis of CFS.CFS is not caused by depression, although the two illnesses often coexist, and many patients with CFS have no psychiatric disorder.Diagnosis of CFS There are no physical signs that identify CFSThere are no diagnostic laboratory tests for CFS.People who suffer the symptoms of CFS must be carefully evaluated by a physician because many treatable medical and psychiatric conditions are hard to distinguish from CFS. Common conditions that should be ruled out through a careful medical history and appropriate testing include mononucleosis, Lyme disease, thyroid conditions, diabetes, multiple sclerosis, various cancers, depression and bipolar disorder.Research conducted by the Centers for Disease Control and Prevention (CDC) indicates that less than 20% of CFS patients in this country have been diagnosed.The CDC itself admits that 80% of people with this illness are out there undiagnosed. Most doctors you see if you have CFS, you are going to need yourself to educate the doctor on the illness as 98% of doctors will not be up to date on this illness. Maybe print that page i got the above quotes I've quote from the government CDC site http://www.cdc.gov/cfs/cfsbasicfacts.htm and take that to your doctor and see what he/she says. (The CDC site will help force the uninformed doctor to get rid of any myths he/she has about this illness). Unfortunately lack of knowledge in this illness, will lead most doctors to be very reluctant to give a diagnoses, if so.. ask to be sent to another doctor or specialist who specialises in this illness. Sometimes one will have to contact local CFS support groups to find doctors who specialise in this illness. As far as tests go.. they are trying to develop one at the moment based on 88 abnormal genes they've found in CFS patients... but it probably will be years before they've finished developing the test and it's public. CFS thou does have scientific tests which can be done which point towards CFS based on the diagnostic criteria probably being correct eg in my own case i have the following abnormal tests (which thou not all with CFS have, they are common ones for ones with CFS to have) ...-postive rombergs test (it's a neuro test)-abnormal EEG's, abnormally low cortisol (one third of women with CFS have this... adrenals malfunctioning is common), -sympathetic nervous system dysfunction showing by 24 hr BP monitoring, hyper-reflexia, i can faint on tilt table testing etc. - vitamin D deficiency (my body cant convert D2 to D3 active form of D) Only a CFS specialist will have any idea at all at what tests to do if one has CFS in which one MAY find the abnormalities often found in CFS people. For more info on CFS.. I suggest to check out www.immunesupport.com which is the webs biggest CFS site.
    taniaaust1 2267 Replies
    • August 15, 2008
    • 08:37 AM
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  • Thank you for all this information you have been very helpful. I am very sorry to hear how bad it has gotten for you :( You must be a very strong minded person to be able to deal with all of this, you are a courageous one. It makes me realise that I should probably stop pushing myself so hard, before it gets worst for me also. I really hope that doctors will start taking this illness seriously and that more research will be done. For my part I will keep my healthiest life style hoping that this will not become worse and I will try to find a doctor who understands this. Thank you for all the information. Good luck my dear!
    Giantsteps 3 Replies
    • August 15, 2008
    • 00:43 PM
    • 0
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  • Do you have a carbon monoxide detector to make sure there is no gas exposure?Get your glands checked, adrenal, thyroid..
    Monsterlove 2921 Replies
    • August 18, 2008
    • 05:14 AM
    • 0
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  • I don't know if you've done this already but ask your doctor for a complete blood work. Often times B12 deficiency is overlooked. If you are diagnosed with B12 deficiency, you will need to take B12 injections. Taking B12 orally will not help as the problem stems from our stomach not being able to extract B12 in the first place. At first, you will need subsequent injections until normal levels are reached and then be put on a maintenance program. Each person is different and you might need a few weeks or months to notice any difference. But if you feel no considerable improvement ask your doctor if the injections frequency can be increased until you start feeling a difference. Apparently there is a low level of toxicity with B12 as the excess is excreted in the urine.The important thing is to find out why your body is not absorbing B12 in the first place. This usually starts in the stomach.Hope this helps.IMO
    falcios 1 Replies
    • August 18, 2008
    • 10:17 AM
    • 0
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  • Thank you for all this information you have been very helpful. I am very sorry to hear how bad it has gotten for you :( You must be a very strong minded person to be able to deal with all of this, you are a courageous one. It makes me realise that I should probably stop pushing myself so hard, before it gets worst for me also. I really hope that doctors will start taking this illness seriously and that more research will be done. For my part I will keep my healthiest life style hoping that this will not become worse and I will try to find a doctor who understands this. Thank you for all the information. Good luck my dear! Thanks. This is something else you could find helpful which my CFS specialist (Dr John Graham) has written www.sacfs.asn.au/medical/summary_cfs_like_states.htm (gives you more of an idea how a CFS specialist may be treating you and what other kinds of things would be being looked for.. another thing which would be good for you to copy and take to a doctor if you cant yourself find a specialist).
    taniaaust1 2267 Replies
    • August 18, 2008
    • 10:50 AM
    • 0
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  • CFS & Fibro & much MORE have been tied to UnDX'D Lyme Disease and other tick infections. There are no "real" tests for Fibro or CFS...BUT the Western Blot is the best for Lyme detection. Check out www.lymenet.org and see how many there were told its "just fibro or CFS." Most drs don't know abt Lyme, so a special dr, one who is Lyme Literate is needed.No offense intended, CFS & Fibro are syndromes, a collection of symptoms. Lyme/Borriella is a real, bacterial disease. 10 yrs ago, I was dxd with Fibro. 2 yrs ago I found it was Lyme, from a bite that happened 20 yrs ago. The right treatment, does make a difference. For 10 yrs, I was on usless antidepressants, for Fibro. To help manage some of the pain and with time it got worse and more symptoms appeared. Please, don't waste your precious life, time and money on a dx of cfs or fibro. The choice is yours, run the "gamet" or cut to the chase and get feeling better. Best wishes~~JerseyLymiehttp://www.ilads.org/files/ILADS_Guidelines.pdf"The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological Borrelia burgdorferi infection."Fibromyalgia"The outcome of treating fibromyalgia secondary to Lyme disease with nonantibiotic regimens has been poor. The most encouraging clinical trial showed success in only one of 15 patients and only modest improvement in 6 of 15 individuals with fibromyalgia despite 2 years of treatment.Antibiotic therapy has been much more effective than supportive therapy in symptomatic patients with fibromyalgia secondary to Lyme disease.Fibromyalgia treatment alone without antibiotics raises the risk of conversion to refractory chronic Lyme disease and/or exacerbation of an undiagnosed persistent infection and is not recommended. Increasingly, clinicians do not feel comfortable treating fibromyalgia in Lyme disease without antibiotics."~~~~http://www.immunesupport.com/library/showarticle.cfm/ID/3579""When there are clinical signs, e.g., rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued. On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12). ""
    Anonymous 42789 Replies
    • August 19, 2008
    • 11:00 AM
    • 0
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