Discussions By Condition: I cannot get a diagnosis.

Acts like fibro, but getting worse fast

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: cindy101520
  • April 17, 2009
  • 03:18 AM

Please help.

My 15 year old daughter has had abdominal pain, nausea and stomach pain after eating, chronic muscle aches, muscle weakness, headache and migraine, and persisting fatigue for over 7 years. Now, She can't eat or drink without pain. She is too weak to attend school.

Every doctor we've been to assumes that she a) doesn't like school (she loves school), b) is anorexic/bulimic (she isn't), or c) is "simply" depressed/anxious. She has been tested for the basic autoimmune disorders (mono, Guillaume Barre), inflammatory diseases (RA, OA), allergies (all negative), thyroid disease, and psychological disorders. After 7 years of chronic illness, this year she did start treatment for depression and anxiety .

We are at our wit's end. Every time we try a new doctor, we have to start all over again. 7 years. Somebody please help us find a new direction. I've probably left out vital information because we've just returned from another ER visit during which a uninterested doctor gave her fluids and sent her home. So please ask questions to help me clarify.

Thanks.

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15 Replies:

  • sorry to hear about your daughters state. The most likely cause of her condition is chronic fatigue immunity dysfunction syndrome CFIDS also called ME and CFS. CFIDS is the most common medical cause of long term school abteeism in children. This can cause a lot of different symptoms http://wwcoco.com/cfids/bernesx.html daisy is a child with severe CFIDS who talks about this illness (your daughter may find she reasonates to a lot of what daisy says). http://www.youtube.com/watch?v=wzH6gI86pfk . Another child (this one a doctomentry) talking about this illness http://www.youtube.com/watch?v=dtWzp_7Z034&feature=related................ The CDC says that 80% of ones with this illness remain undiagnosed. This is cause most doctors are not completely familiar with this illness and there is many different misconceptions about it out there.. (so I strongly suggest you research this illness yourself some).I suggest you join up with one of the online support groups to learn more about this illness. Seek out a doctor who specialises in CFIDS and is used to dealing with CFIDS patients to get a diagnoses or to rule this illness out. Many with CFIDS are harmed by doctors trying to treat them who just dont know enough about this illness. (the latest research is showing that their is mitochrondial malfunctions happening.. the mitochrondia is the power house of the cells). Anxiety and depression are common with this illness and often coexist.. often due to how CFIDS patients are treated we end up with these issues on top of the whole rest of the illness. best luck.message me back if you seek any more info on this illness (ive had it for 12 yrs).
    taniaaust1 2267 Replies Flag this Response
  • I have asked my PCP to run tests for ME for myself (down with something that's not only fibro for 26 years now). I've gone to his office armed with articles, lists of tests, websites to visit... Clearly time to get a new PCP. :(What is the likelihood that we BOTH have it? And have you found any relief?
    cindy101520 4 Replies Flag this Response
  • I have asked my PCP to run tests for ME for myself (down with something that's not only fibro for 26 years now). I've gone to his office armed with articles, lists of tests, websites to visit... Clearly time to get a new PCP. :( What is the likelihood that we BOTH have it? And have you found any relief? There certainly seems to be a genetic component in this illness. Many of the CFS/ME experts talk about this.. and I also know many including in my own case who has more than one family member with it. (my first degree cousin has been on disability with this illness since a teen). Also at the very start of the illness, there can be also be an infectous component to it so its possible for two unrelated household members to come down with this illness. This is why outbreaks happen worldwide at times of this illness. (One of the most famous ones is the one back in the 1980's in which Dr Cheney and Dr Peterson became well known for investating.. the Lake Tahoe Nevada outbreak). (Many of those are still sick this day!). FM and CFS are overlapping illnesses too... one study showed that up to 75% of CFS patients have FM. While many FM specialists say that many of their patients (25%) go on to develop CFS. (my nanna has FM). There is no specific test for ME.. so hence the diagnostic guidelines were formed (the latest one the CDC is using is crap, as ones with major depressive illness often are wrongly diagnosed with CFS by it.. The canadian CFS/ME diagnostic guidelines are far more accurate and world wide more accepted). There are thou tests which CAN back up a CFS/ME diagnoses as CERTAIN *non specific findings are often found. So testing for these can help back up that a CFS/ME diagnoses is actually correct. It is very likely that your doctor hasnt given out a CFS/ME diagnoses as he doesnt know about it and unless he's a specialist in this field, he wouldnt know about what things to even go looking for in tests to do with the CFS/ME. Most doctors dont know much at all about this illness, hence it's so important to find one who does. *non specific means they are also found in other illnesses too.. Some abnormalities which could be found in this illness are hypoglycemia, low cortisol (one third of us have that), postive romberg's test (that's a neuro test, ive read that up to 95% of those with ME have that finding..but i dont know how true that percentage is, non specific findings on EEG. Many of us have POTS (postural tachycardia syndrome) (tilt table testing can show that) or other autonomic nervous system dysfunctions going on which arent found unless the doctors run the right tests. (i have ALL the above abnormalities due to the CFS/ME.. but my case of CFS/ME has been severe.. many may just find one of those or another known abnormalities which often appear in this illness). Thou this illness cant be cured as such.. there are treatments for ME. Be wary of GET as it is well known to make many of us a lot worst (some permanently). CBT is only useful in helping one to accept one is ill and learn to pace ones energy better, it doesnt cure. Many CFS specialists in the field do have other treatments which are either like hit or miss for us, they do know a lot more about this illness then they did just a few years ago. In my own case Im on twice weekly B12 injections and that helps my memory and concentration issues. Im also on treatment to try to boost my fluid volume due to the CFS/ME giving me POTS... and im on many supplements and an anti anxiety drug which is commonly used in CFS/ME (as it's also a neuro protector). The thing Im doing do help me some but Im still on disability and far away from being recovered. * I was getting a lot of anxiety due to never knowing when im going to "crash" and due to just how hard this illness makes it to function in my daily life. (Anti anxiety pills dont actually fix the other issues.. but stop me from stressing out so much when the other issues kick in).............. If you are seeking more advice and support on this illness.. I recommend the CFS support forum at http://forum.notcrazy.net/index.php (there are several who have had it from young age there or are still young and has a mother caring for them.. or mother and child combination both dealing with CFS/ME). (it's mostly an aussie group but others are quite welcome)
    taniaaust1 2267 Replies Flag this Response
  • "What is the likelihood that we BOTH have it?" I came across the following news item today which talks some about how genetics can be involved in CFS/ME (talks about that about half way throu) http://www.youtube.com/watch?v=TRtxMYI-zKg
    taniaaust1 2267 Replies Flag this Response
  • Thank you! Researching (again) like mad and have stiffened my resolve to find someone who can help us. We had a disastrous ER visit on Thursday. :mad:Thanks for your happy thoughts.
    cindy101520 4 Replies Flag this Response
  • The ER is not the place for your daughter, unfortunately they cannot help chronic conditions like the one you describe...it is like putting a bandaid on a fracture. Have you considered a more holistic approach to helping your daughter heal? A good naturopathic doc or acupuncturist or NAET practitioner may really help shed some light on her condition and offer real solutions. A few questions: you mention stomach pain - does she have pain on one side or in the middle of her abdomen? How are her stools? How frequent and does she suffer from constipation, loose stools, diarrhea or IBS? How is her menstruation? Any problems? Heavy periods or painful periods? Where do you live? Has she been tested for Lyme by a Lyme Literate Doc? Does she have a history of respiratory illnesses, sinusitis, or other? Has she taken multiple courses of antibiotics and does she get sick easily? Does she drink sodas or diet sodas daily? How is her diet - does she drink milk or eat a lot of dairy or wheat products? Just because allergy testing was negative doesn't mean she isn't having food intolerances. Testing is notoriously inaccurate. This is important and is often overlooked by docs: has she had her B12 and vitamin D levels tested? Do you know what the numbers are if so, and if not please get her tested asap for both B12 and D. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • We are at our wit's end. Every time we try a new doctor, we have to start all over again. 7 years. . One thing I found helpful when doing the doctor to doctor and specialist to specialist thing.. is to get a copy of all ones medical records and keep these in a file yourself to take to appointments. Have all tests previously done by others etc with you. One thing I found is that often info isnt passed on when one is refered elsewhere.. and hence the same ground is sometimes gone over time and time again, some tests redone each time one goes back to square one. For myself as I have so many different symptoms.. I often will post a cover letter to the doctor just before my visit.. detailing all these with a description of my complex history. cindy.. try to contact your local CFS/ME/CFIDS society and try to get some recommendations of doctors who understand this illness from them. i dont know if i can help you there or not (im familar with many of the organisations) .. but if you want to tell me what part of the world you are in, maybe i can.
    taniaaust1 2267 Replies Flag this Response
  • Im cleaning out old things out of my email box so coming across various things and one had a link which i thought this one may interest you being relevant to what you are facing right now.This survey shows what a sad story is getting a correct diagnoses when one has CFS. This is why i keep saying make sure you go to a doctor who is familiar with this illness.. or you will go doctor to doctor without diagnoses. http://www.prohealth.com/library/showarticle.cfm?id=8861&t=CFIDS_FM "Results of an ME/CFS Patient Survey Recently, more than 1,200 patients diagnosed with ME or ‘Chronic Fatigue Syndrome’ took a survey posted in ProHealth’s ME/CFS newsletter. The following results – statistics on patient age, length of illness, and years/number of doctors required to receive a diagnosis - may contribute to a sharper picture of the ME/CFS community and their challenges. ProHealth ran this survey at the suggestion of Encounters with the Invisible author Dorothy Wall and ME/CFS doctor Lily Chu, MD, MPH. Wall and Chu are researching information for a public education article on ME/CFS, and have found that answers to these types of questions are not easily available in the research literature. We also recognize that this group of diagnosed patients is a minority - since as reckoned by researchers at the CDC and DePaul University, about five of every six ME/CFS sufferers in the U.S. are still undiagnosed.* ME/CFS Public Education Survey Questions 1. How old are you?The majority (76%) are between ages 30 and 60 Under 20....17.....1%20-29........76......8%30-39.......189....16%40-49.......329....27%50-59.......401....33%60-69.......173....14%70-older.....34......3%____________________Total.......1219....100%** 2. How long have you been ill with ME/CFS?One in three have been ill for more than 15 years, and one in five for more than 20 Under 1 year.....15.....1%1-5 years........258....21%6-10 years......318....26%11-15 years....211....17%16-20 years....188....15%20+ years.......227....19%_______________________Total.............1217...100% 3. How long did it take you to be diagnosed with ME/CFS by a healthcare provider?29% had been ill from 6 to 20-plus years before being diagnosed. Under 1 year....275....23%1-5 years.........579....78%6-10 years.......171....14%11-15 years.......80......7%16-20 years.......53......4%20+ years..........52......4%________________________Total..............1210....100% 4. How many healthcare providers did you see before you were diagnosed?44% saw from 5 to more than 20 doctors before being diagnosed 1-4 doctors........679....58%5-9 doctors........336....28%10-15 doctors.....110.....9%16-20 doctors.......34.....3%More than 20........53.....4%_________________________Total.................1212....100% ___* Researchers at the CDC and DePaul University put the number of Americans with ME/CFS at about 900,000 - and estimate that between 80% and 90% of them are undiagnosed and not receiving proper medical care. (See "The Face of CFS in the U.S." by Dr. Leonard Jason, et al.) ** Totals differ slightly as not all respondents answered all questions "
    taniaaust1 2267 Replies Flag this Response
  • taniaaust1,I just wanted you to know I'm still reading your posts... just really ill today, both of us. We are in Arizona. thanks againCindy
    cindy101520 4 Replies Flag this Response
  • ok.. here's some associations you could end up getting some advice re CFS specialists from. CFIDS Association of America www.cfids.org. Chronic Fatigue Syndrome Association of Arizona P.O. Box 15234. Scottsdale, AZ 85267-5234. Phone: (602) 407-2511. (not sure if this one still exists). June MolineHC 62, P.O. Box 47093Pinetop, AZ 85935Fax: (520) 369-5029 (runs a FM or CFS support group) also http://www.prohealth.com/supportgroups/index.cfm 8 listings come up if you search there "ME/CFS" and "Arizona" using that for local CFS support groups (then click the names which come up for addresses and phone numbers......... FM and CFS patients recommendations of doctors they've find helpful with dealing with these things http://www.co-cure.org/USA_AZ.htm....... Im sure there is a very well known CFS/ME specialist or CFS treatment centre ive heard about before in Arizona?.. but unfortunately i cant remember which specialist is running it??......... http://www.geocities.com/cfsdays/find_dr.htm you could try contacting this one. FM and CFS are overlapping illnesses and many specialists treat both. They should know of a doctor............. http://www.fibroandfatigue.com/center_locations.php (not in your place but these are across America and from what i've heard are successfully helping quite a few with CFS/ME). The one who is head of these centres have done some news interviews......... If all the above fails to find you a doctor you can contact with knowledge in this area.. I then suggest to use the forums of the biggest online CFS/ME site (that's the prohealth site.. which had the area support groups on it, it also has a huge online support group)and request to those there for the name of a good doctor dealing with this illness. One of these things will get you a doctor which will be of support and help. i hope tomorrow is a better day for you both
    taniaaust1 2267 Replies Flag this Response
  • Here's a twist: Someone at Facebook messaged me about a news article concerning the area we live in. Bottom line is that there's a old mine nearby that has been listed by the EPA as a hazardous waste area, and the reports I found listed serious issues with lead and arsenic in neighborhood wells. The latest report said that it was not yet clear if the runoff from the tailings had contaminated the river (and I would think) the primary water source of our town.:eek:My daughter used to play in that water. No one told us not to drink the tap water.She and I are being tested for arsenic and lead tomorrow. If it's positive, the rest of the family will be tested too.********And on a different note: My tongue is blue tonight. :confused:
    cindy101520 4 Replies Flag this Response
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  • blue tongue!! if you are certain it wasnt something you've eatten, i'd be ringing the doctor. That could be a serious symptom
    taniaaust1 2267 Replies Flag this Response
  • ohh.. i didnt know much about lead poisoning so just looked it up and as you yourself would of already found out, it fits too with the abdomenal symptoms etc. "The symptoms of lead poisoning may include:IrritabilityAggressive behaviorLow appetite and energyDifficulty sleepingHeadachesReduced sensationsLoss of previous developmental skills (in young children)AnemiaConstipationAbdominal pain and cramping (usually the first sign of a high, toxic dose of lead poison)Very high levels may cause vomiting, staggering gait, muscle weakness, seizures, or coma "from http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/002473.htm ................... from the research i just did.. Arsenic poisoning particularlly tends to affect the brain. Usually starting with headaches but then other symptoms go on and develop eg stomach pains etc. .......... Im so glad you found that out and a doctor is going to be testing you both. Please let us know the outcome.
    taniaaust1 2267 Replies Flag this Response
  • Tania, you have described exactly what I've been suffering from for the last 20 yrs - it could so easily be the story of my life.... including the POTS - I was'nt even aware that the palpitations i get everytime I lie down, or after eating ... had a name. Tell me, what is GET and CBT ... I've been to myriad docs in the past and everyone of them gives me a different spiel .. so much so that I've decided, enough is enough .. and had decided to just live with it!!! Thanks so much for your enlightening article.If you would be so kind as to e-mail me re GET and CBT - i would be grateful. Thanks and God blessKayThere certainly seems to be a genetic component in this illness. Many of the CFS/ME experts talk about this.. and I also know many including in my own case who has more than one family member with it. (my first degree cousin has been on disability with this illness since a teen). Also at the very start of the illness, there can be also be an infectous component to it so its possible for two unrelated household members to come down with this illness. This is why outbreaks happen worldwide at times of this illness. (One of the most famous ones is the one back in the 1980's in which Dr Cheney and Dr Peterson became well known for investating.. the Lake Tahoe Nevada outbreak). (Many of those are still sick this day!). FM and CFS are overlapping illnesses too... one study showed that up to 75% of CFS patients have FM. While many FM specialists say that many of their patients (25%) go on to develop CFS. (my nanna has FM). There is no specific test for ME.. so hence the diagnostic guidelines were formed (the latest one the CDC is using is crap, as ones with major depressive illness often are wrongly diagnosed with CFS by it.. The canadian CFS/ME diagnostic guidelines are far more accurate and world wide more accepted). There are thou tests which CAN back up a CFS/ME diagnoses as CERTAIN *non specific findings are often found. So testing for these can help back up that a CFS/ME diagnoses is actually correct. It is very likely that your doctor hasnt given out a CFS/ME diagnoses as he doesnt know about it and unless he's a specialist in this field, he wouldnt know about what things to even go looking for in tests to do with the CFS/ME. Most doctors dont know much at all about this illness, hence it's so important to find one who does. *non specific means they are also found in other illnesses too.. Some abnormalities which could be found in this illness are hypoglycemia, low cortisol (one third of us have that), postive romberg's test (that's a neuro test, ive read that up to 95% of those with ME have that finding..but i dont know how true that percentage is, non specific findings on EEG. Many of us have POTS (postural tachycardia syndrome) (tilt table testing can show that) or other autonomic nervous system dysfunctions going on which arent found unless the doctors run the right tests. (i have ALL the above abnormalities due to the CFS/ME.. but my case of CFS/ME has been severe.. many may just find one of those or another known abnormalities which often appear in this illness). Thou this illness cant be cured as such.. there are treatments for ME. Be wary of GET as it is well known to make many of us a lot worst (some permanently). CBT is only useful in helping one to accept one is ill and learn to pace ones energy better, it doesnt cure. Many CFS specialists in the field do have other treatments which are either like hit or miss for us, they do know a lot more about this illness then they did just a few years ago. In my own case Im on twice weekly B12 injections and that helps my memory and concentration issues. Im also on treatment to try to boost my fluid volume due to the CFS/ME giving me POTS... and im on many supplements and an anti anxiety drug which is commonly used in CFS/ME (as it's also a neuro protector). The thing Im doing do help me some but Im still on disability and far away from being recovered. * I was getting a lot of anxiety due to never knowing when im going to "crash" and due to just how hard this illness makes it to function in my daily life. (Anti anxiety pills dont actually fix the other issues.. but stop me from stressing out so much when the other issues kick in).............. If you are seeking more advice and support on this illness.. I recommend the CFS support forum at http://forum.notcrazy.net/index.php (there are several who have had it from young age there or are still young and has a mother caring for them.. or mother and child combination both dealing with CFS/ME). (it's mostly an aussie group but others are quite welcome)
    Anonymous 42789 Replies Flag this Response
  • Kay. sorry this is going to be a long post GET stands for graded exercise therapy. Unfortunately many therapists use this in a way which is unwise in someone who truely has CFS/ME (and hasnt just been misdiagnosed with it). (Misdiagnoses could be up to two thirds of patients.. when the Empirical (Reeves) CFS defination is used and aslo some doctors are using CFS/ME like a waste basket diagnoses, if you havent got CFS/ME but another illness instead eg just depression or more depression than CFS, yes then GET could be very benefical). Many using this therapy as treatment, aim to have the patient do exercise.. with the aim being to constantly progress the amount of exercise being done. Considering that it is actual exercise which often makes and keeps a CFS/ME patient really unwell and puts them at risk of actually "crashing" or "relapsing" and getting worst, most patient groups are against GET.. or say it has to be used extremely carefully. Several CFS/ME patients have actually died due to GET. As many CFS/ME patients that are helped by GET are actually made worst by GET! (and the ones dropping out of the studies due to not being able to continue, often arent being counted). So as far as Im concerned, GET is a game of like russian roulette. (anyone with severe CFS/ME should completely avoid GET) http://www.investinme.org/Article-253%20CBR%20Dutch%20Press%20Release.htm (the other patient groups world wide say the same thing) Lots of CFS/ME patients comment on GET http://www.ahummingbirdsguide.com/cbtandget6.htm Surveys of M.E. patients on the effects of GET illustrate the accuracy of these findings only too well: "In 1998 a survey of over 3000 UK M.E. patients found that the single most harmful strategy was graded exercise therapy. 50% of respondents who had tried GET indicated that graded exercise had made their condition worse.. The most helpful strategies were: a) Pacing activity with rest: 90% b) Bed rest: 89% (Jones 1998, .) In 2004 a survey of severely affected M.E. sufferers again found that graded exercise was by far the single most harmful treatment. 95% said that graded exercise was ‘unhelpful’ while a shocking 82% reported that it had made their condition worse. A significant number of those surveyed indicated that they were not severely affected before GET. (25% M.E. Group 2004, ) Thus GET should not be considered safe for M.E. sufferers of any severity." "In addition to the risk of relapse, sudden deaths have also been reported in a small percentage of M.E. patients following exercise. As Dr. Elizabeth Dowsett, explains; ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’ Dr Dowsett has estimated the death rate of M.E. to be 3% . (This figure however also includes other causes of death including organ failure, another common cause of death in M.E. patients). (2000, ) (2001, )." the well known CFS co-cure site not long ago did a survey there on GET, over 2000 CFS/ME patients responded. I cant find the survey right now but the GET came out very bad on that too.......... There are some therapists who do do GET differently to most with their patients....these teach their patients the importance of "pacing" and rest and teach their patiences not to over do things. This form of GET can be very helpful to someone who hasnt had CFS/ME for a long time and hence keeps overdoing things and "crashing". This form can help someone learn to balance out their activities according to what they can do, and avoid post exertional symptoms. (long terms ones with CFS/ME usually have learnt all this for themselves anyway).............. So why do doctors recommend this therapy.. 1/ Cause GET studies have been done misleadingly, not telling of the rates of drop outs or worsening etc. (and most doctors are not aware of this)2/ they just dont know what else to do for us and suggest (a lot of them dont understand CFS/ME and have the mistaken belief it's just in our heads)3/ Some ARE helped by GET (just thou the ones made worst are ignored).................. CFS/ME is a disease in which there is mitochrondrial malfunctioning.. highly specialised tests are needed to show this. (these tests right now are being developed more for the general public and they've said should be more available in a couple of years. Some are gettin this test now but it's expensive and i dont know if it's available outside of (England??). Mitochondria provide our bodies with energy. Energy is needed in ALL parts of our bodies and burning this energy up at a rate faster than our misfunctioning mitochrondria can provide it, isnt a good idea as it can actually damage our cells etc.
    taniaaust1 2267 Replies Flag this Response
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