Discussions By Condition: I cannot get a diagnosis.

ITS NOT IN MY HEAD, Please help!

Posted In: I cannot get a diagnosis. 38 Replies
  • Posted By: Not Fibro
  • October 5, 2009
  • 08:54 AM

Hi, I am 15 and I was diagnosed with Fibromyalgia last year (though I have had symptoms for nearly 3 years now)

(Also.. i posted this before, didnt get any answers. I am reposting because i am VERY desperate and I really dont know what to do anymore)

Im gonna cut to the chase, so here are the symptoms:

- Chronic leg pain

- Chronic Body pain

- Chronic Stomach pain

- Chronic shortness of breath

- Extremely fast heart rate

- Palpitations

- SEVERE Insomnia (I sleep only max 4 hours per night, 3 hours average and 6 hours on good nights)

- Muscle pain

- Bone pain

- Chronic thrush infection on the tongue. (that wont go away with antifungal mouthwash ect)

- Dry mouth

- Dry eyes

- Weird purple & white marks that feel like tunnels in my knees (Will post a pic as soon as my camera is charged)

- Electrical shocks across my chest and down the side of my chest

- Joint pain

My family has a history of cancer, heart disease, bleeding disorders.

Theres no point in really listing all that ive been tested for.. anything you can think of ive probably been tested.

But to rattle some off the top of my head that ive been tested for:

Lupus, Lyme disease, Autoimmune conditions, Arthritis, and a LOT more

More detail on what tests have been done:

Ive seen countless doctors, 5 full body CT's, 1 target MRI of the head and ENDLESS amounts of blood tests

My doctor says its Fibromyalgia, but I think hes just saying that but really thinks that its all in my head.

The only way I am going to get diagnosed properly is if I take it into my own hands, I have been to so many websites like this... Im just begging for help, please help me get my life back on track.

Thank you very much in advance

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38 Replies:

  • ok to better understand your situation I have a few questions. what is the timeline of the symptoms? When did each symptom occur? What meds are you taking or have you taken, in respect to the symptoms and right before symptoms started. Do you take antibiotics frequently? Any type of trama,stress, or life changes coincided with the symptoms? Height and weight (or weight category if you prefer). Also you said you have seen several drs. Are they all a part of the same general practice or where they refered by a previous dr? Did they all conme to the Fibro diagnosis? Also. what is your gender. Just looking at symptoms alone, without the other information, I can see how they might conclude Fibro. Its a catch-all for unexplainable pain which can in itself bring on depression and anxiety, which you also seem to have. A few of the symptoms, however, are generally symptoms from medications. Also, I have found that doctors under the same practice or system or will generally not contradict each other.
    Anonymous 42789 Replies
    • October 5, 2009
    • 04:38 PM
    • 0
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  • I'm 29 now and have had huge struggles with doctor's trying to figure out what exactly is wrong for at least 2 decades. DO NOT GIVE UP! I have only gotten answers within the last 4 years. It's not in your head, well not psychiatrically at least.I have one diagnosis that has relieved some of the more serious symptoms I had. I was diagnosed with Neurally mediated hypotension amongst other things. I am taking a Beta Blocker to lower my ridiculously high blood pressure, stop the passing out, and help reduce the breathlessness. The NMH is an autonomic nervous system dysfunction, aka Postural Orthostatic Tachycardia, or Chronic Orthostatic Intolerance, or vaso-vagal syncope. Many names because each has its own extra few symptoms. All of the cardiologists exams were negative, but the symptoms fit and the doctor said the heart racing like that and stopping abruptly (the fainting in my case) can be permanent.http://www.healthy-holistic-living.com/high-pulse-low-blood-pressure.htmlThe onset of POTS often follows a viral infection or other inflammatory condition. It affects an unknown number of patients, mostly female, between the ages of 12 and 50. Symptoms will vary from person to person and will include some of the following: palpitations, dizziness, lightheadedness, exercise intolerance, blurred vision, chest pain, high pulse low blood pressure, fainting, fatigue, migraines, blood pooling in limbs, cognitive impairment, gastric discomfort, and sleep disorders among others. I took ambien for the 7 to 10 days to reset my body and eliminate the insomnia. You do NOT want the ambien you just take every day for the foreseeable future.I hope this helps with a direction to start with. It doesn't cover everything by any means, but it covers some of the symptoms that sound serious. I do not know why your facial orifices are dried out and/or infected (look into a candida cleanse it deals with yeast build-up in the body from the foods we eat and antibiotic use). You should also check into your vitamin levels as I have found that my body being on high alert and stressed for so long has resulted in low DHEA (adrenal gland output), low B12, low vitamin D, and high chortisol and cardiac levels. All of these have led to many other symptoms that after 20 years are now showing up. Also, you may have anemia, metal poisoning, or a complex pain syndrome.Make sure it's not mold allergy.
    Anonymous 42789 Replies
    • October 5, 2009
    • 05:55 PM
    • 0
    Flag this Response
  • ok to better understand your situation I have a few questions. what is the timeline of the symptoms? When did each symptom occur? What meds are you taking or have you taken, in respect to the symptoms and right before symptoms started. Do you take antibiotics frequently? Any type of trama,stress, or life changes coincided with the symptoms? Height and weight (or weight category if you prefer). Also you said you have seen several drs. Are they all a part of the same general practice or where they refered by a previous dr? Did they all conme to the Fibro diagnosis? Also. what is your gender. Just looking at symptoms alone, without the other information, I can see how they might conclude Fibro. Its a catch-all for unexplainable pain which can in itself bring on depression and anxiety, which you also seem to have. A few of the symptoms, however, are generally symptoms from medications. Also, I have found that doctors under the same practice or system or will generally not contradict each other. Timeline of symptoms -3 Years ago, I jumped a fence into a forest at school to get a ball that we accidently kicked over. I went home, Had a thick coating on my tongue, Swollen tonssil, numb mouth Extreme abdominal pain followed (I think i forgot to mention this in the symptoms but ill have to check) about 2 months later. Once the abdominal pain started, I started to get all those other symptoms all at once within 5 moths of the stomach pain. All these symptoms have just gotten worse. So in those few months after that initial incident, I got all these symptoms. Which were fairly mild (besides the stomach pain) and in the years since then the symptoms just get worse Medications taken before and after onset of illness - Cymbalta (After my diagnosis of Fibro) Antibiotics regularly? - No, rarely. Trama, Stress, Life changes - Moved from a city when I was 8, tho that was FAR before the illness onset and I was happy about leaving the city. Other than that nothing Im about 5 - 6 feet tall, 115 pounds (Male) Age 15 I was refered by my family doc to a pediatrition, who then sent my to Sick Kids Hospital (I lvie in Canada also, that might be useful in some way) Where they concluded that I have Fibro. After doing no tests at the hospital... and secretly refering me to a neurologist (I say secretly because I only found out about it 1 week ago, when they should have told me when I was at the hospital) So I dont think they are connected in any way other than the referals they gave me. I'm 29 now and have had huge struggles with doctor's trying to figure out what exactly is wrong for at least 2 decades. DO NOT GIVE UP! I have only gotten answers within the last 4 years. It's not in your head, well not psychiatrically at least. I have one diagnosis that has relieved some of the more serious symptoms I had. I was diagnosed with Neurally mediated hypotension amongst other things. I am taking a Beta Blocker to lower my ridiculously high blood pressure, stop the passing out, and help reduce the breathlessness. The NMH is an autonomic nervous system dysfunction, aka Postural Orthostatic Tachycardia, or Chronic Orthostatic Intolerance, or vaso-vagal syncope. Many names because each has its own extra few symptoms. All of the cardiologists exams were negative, but the symptoms fit and the doctor said the heart racing like that and stopping abruptly (the fainting in my case) can be permanent. http://www.healthy-holistic-living.com/high-pulse-low-blood-pressure.html The onset of POTS often follows a viral infection or other inflammatory condition. It affects an unknown number of patients, mostly female, between the ages of 12 and 50. Symptoms will vary from person to person and will include some of the following: palpitations, dizziness, lightheadedness, exercise intolerance, blurred vision, chest pain, high pulse low blood pressure, fainting, fatigue, migraines, blood pooling in limbs, cognitive impairment, gastric discomfort, and sleep disorders among others. I took ambien for the 7 to 10 days to reset my body and eliminate the insomnia. You do NOT want the ambien you just take every day for the foreseeable future. I hope this helps with a direction to start with. It doesn't cover everything by any means, but it covers some of the symptoms that sound serious. I do not know why your facial orifices are dried out and/or infected (look into a candida cleanse it deals with yeast build-up in the body from the foods we eat and antibiotic use). You should also check into your vitamin levels as I have found that my body being on high alert and stressed for so long has resulted in low DHEA (adrenal gland output), low B12, low vitamin D, and high chortisol and cardiac levels. All of these have led to many other symptoms that after 20 years are now showing up. Also, you may have anemia, metal poisoning, or a complex pain syndrome. Make sure it's not mold allergy. Thank you very much, Ill talk to my doctor about this.
    Not Fibro 8 Replies
    • October 5, 2009
    • 10:51 PM
    • 0
    Flag this Response
  • ok to better understand your situation I have a few questions. what is the timeline of the symptoms? When did each symptom occur? What meds are you taking or have you taken, in respect to the symptoms and right before symptoms started. Do you take antibiotics frequently? Any type of trama,stress, or life changes coincided with the symptoms? Height and weight (or weight category if you prefer). Also you said you have seen several drs. Are they all a part of the same general practice or where they refered by a previous dr? Did they all conme to the Fibro diagnosis? Also. what is your gender. Just looking at symptoms alone, without the other information, I can see how they might conclude Fibro. Its a catch-all for unexplainable pain which can in itself bring on depression and anxiety, which you also seem to have. A few of the symptoms, however, are generally symptoms from medications. Also, I have found that doctors under the same practice or system or will generally not contradict each other. Timeline of symptoms -3 Years ago, I jumped a fence into a forest at school to get a ball that we accidently kicked over. I went home, Had a thick coating on my tongue, Swollen tonssil, numb mouth Extreme abdominal pain followed (I think i forgot to mention this in the symptoms but ill have to check) about 2 months later. Once the abdominal pain started, I started to get all those other symptoms all at once within 5 moths of the stomach pain. All these symptoms have just gotten worse. So in those few months after that initial incident, I got all these symptoms. Which were fairly mild (besides the stomach pain) and in the years since then the symptoms just get worse Medications taken before and after onset of illness - Cymbalta (After my diagnosis of Fibro) Antibiotics regularly? - No, rarely. Trama, Stress, Life changes - Moved from a city when I was 8, tho that was FAR before the illness onset and I was happy about leaving the city. Other than that nothing Im about 5 - 6 feet tall, 115 pounds (Male) Age 15 I was refered by my family doc to a pediatrition, who then sent my to Sick Kids Hospital (I lvie in Canada also, that might be useful in some way) Where they concluded that I have Fibro. After doing no tests at the hospital... and secretly refering me to a neurologist (I say secretly because I only found out about it 1 week ago, when they should have told me when I was at the hospital) So I dont think they are connected in any way other than the referals they gave me. I'm 29 now and have had huge struggles with doctor's trying to figure out what exactly is wrong for at least 2 decades. DO NOT GIVE UP! I have only gotten answers within the last 4 years. It's not in your head, well not psychiatrically at least. I have one diagnosis that has relieved some of the more serious symptoms I had. I was diagnosed with Neurally mediated hypotension amongst other things. I am taking a Beta Blocker to lower my ridiculously high blood pressure, stop the passing out, and help reduce the breathlessness. The NMH is an autonomic nervous system dysfunction, aka Postural Orthostatic Tachycardia, or Chronic Orthostatic Intolerance, or vaso-vagal syncope. Many names because each has its own extra few symptoms. All of the cardiologists exams were negative, but the symptoms fit and the doctor said the heart racing like that and stopping abruptly (the fainting in my case) can be permanent. http://www.healthy-holistic-living.com/high-pulse-low-blood-pressure.html The onset of POTS often follows a viral infection or other inflammatory condition. It affects an unknown number of patients, mostly female, between the ages of 12 and 50. Symptoms will vary from person to person and will include some of the following: palpitations, dizziness, lightheadedness, exercise intolerance, blurred vision, chest pain, high pulse low blood pressure, fainting, fatigue, migraines, blood pooling in limbs, cognitive impairment, gastric discomfort, and sleep disorders among others. I took ambien for the 7 to 10 days to reset my body and eliminate the insomnia. You do NOT want the ambien you just take every day for the foreseeable future. I hope this helps with a direction to start with. It doesn't cover everything by any means, but it covers some of the symptoms that sound serious. I do not know why your facial orifices are dried out and/or infected (look into a candida cleanse it deals with yeast build-up in the body from the foods we eat and antibiotic use). You should also check into your vitamin levels as I have found that my body being on high alert and stressed for so long has resulted in low DHEA (adrenal gland output), low B12, low vitamin D, and high chortisol and cardiac levels. All of these have led to many other symptoms that after 20 years are now showing up. Also, you may have anemia, metal poisoning, or a complex pain syndrome. Make sure it's not mold allergy. Thank you very much, Ill talk to my doctor about this.
    Not Fibro 8 Replies
    • October 6, 2009
    • 03:39 AM
    • 0
    Flag this Response
  • Timeline of symptoms -3 Years ago, I jumped a fence into a forest at school to get a ball that we accidently kicked over. I went home, Had a thick coating on my tongue, Swollen tonssil, numb mouth Extreme abdominal pain followed (I think i forgot to mention this in the symptoms but ill have to check) about 2 months later. Once the abdominal pain started, I started to get all those other symptoms all at once within 5 moths of the stomach pain. All these symptoms have just gotten worse. So in those few months after that initial incident, I got all these symptoms. Which were fairly mild (besides the stomach pain) and in the years since then the symptoms just get worse Medications taken before and after onset of illness - Cymbalta (After my diagnosis of Fibro) Antibiotics regularly? - No, rarely. Trama, Stress, Life changes - Moved from a city when I was 8, tho that was FAR before the illness onset and I was happy about leaving the city. Other than that nothing Im about 5 - 6 feet tall, 115 pounds (Male) Age 15 I was refered by my family doc to a pediatrition, who then sent my to Sick Kids Hospital (I lvie in Canada also, that might be useful in some way) Where they concluded that I have Fibro. After doing no tests at the hospital... and secretly refering me to a neurologist (I say secretly because I only found out about it 1 week ago, when they should have told me when I was at the hospital) So I dont think they are connected in any way other than the referals they gave me. Thank you very much, Ill talk to my doctor about this. Sorry, double post'd this (dunno why that happened) Right now I am thinking about: Sjorgens Disease. Churg-stauss syndrome Fabry's disease. Autoimmune disorder AIP (Acute Intermittent Prophyria) POTS Thoughts? If i could get some insight on which of those is most likely, id greatly appreciate it. I have a doctors app soon so i could ask about it
    Not Fibro 8 Replies
    • October 8, 2009
    • 06:40 AM
    • 0
    Flag this Response
  • Hi, I checked back to mention Sjorgens Disease after I had initially said I couldn't place the dry facial orifices. So, I agree with your new thoughts on that. I also agree that Acute Intermittent Prophyria should be considered. You definetly want to do the candida yeast cleanse. Regardless of the cause of the chronic tongue infection, the fact that it is chronic means it has gone untreated for too long already and it can spread into the esophagus and eventually into other organs. I also think you may want to add diabetes to the blood work I previously mentioned. It could explain some of the symptoms along with the thrush.I don't think that Churg-stauss syndrome or Fabry's disease fit, but you may be experiencing slight things you know make it relevant.I now question the POTS only because the Cymbalta can effect orthostatic hypotension and Serotonin Syndrome. You'll have to think back to make sure the POTS symptoms were present before last year when you started the Cymbalta. Please look at the link; specifically, page 4 of 10 to view precautions about insomnia, orthostatic hypotension, and Serotonin Syndrome. Also, remember anti-depressants like Cymbalta are not indicated for peds under age 24. I tried it in 2005 at about age 25 and had to stop within a week for exacerbating my POTS symptoms. Just be careful.http://www.rxlist.com/cymbalta-drug.htm#How this all started 3 years ago I think is very important. I don't know what caused your particular set of symptoms: heavy metal poisoning, or mushroom or plant poisoning, or if it was a virus like TB, http://www.emedicinehealth.com/tuberculosis/page3_em.htm epstein barr/mononucleosis, or varicella-zoster virus which causes chicken pox, shingles, and Ramsay Hunt syndrome,http://www.nlm.nih.gov/medlineplus/ency/article/000858.htmor a bug bite (I know you said it wasn't Lyme), but there are other mean forest critters.Keep in mind that you may not have the most common symptoms that we hear about, but you may have a long-term chronic blood disease; so, rule out Shingles and TB or anything else you think could remotely be right. If you don't ask the doctors for the specific tests you may need to consider, they won't think of it.Good luck and well being.
    Anonymous 42789 Replies
    • October 8, 2009
    • 05:10 PM
    • 0
    Flag this Response
  • I had an epiphany. Now just... follow me for a second. Okay, POTS, high heart rate when standing, sitting, laying down, and all other symptoms of the disease. Check. POTS Accompanied by Fibromyalgia. Check. My doctor being an idiot and misdiagnosing me with anxiety (As the cause of my heart problems) Check. Now, on to what I noticed today after reading this: "Veins have leaflet valves to prevent blood from flowing backwards (retrograde). Leg muscles pump the veins to return blood to the heart, against the effects of gravity. When veins become varicose, the leaflets of the valves no longer meet properly, and the valves don't work. This allows blood to flow backwards and they enlarge even more" I have these in my arms, When my arms are to my sides, the veins bulg and if you touch them they feel like stone. As soon as i raise my arms higher than my heart they go back to normal. So Varicose veins caused by POTS, (fast heart rate causing blood to pool in my arms and legs) Check. Now... Im starting to think i do have POTS with a complication of Fibromyalgia. I just wanna know how a 15 year old comes to this conclusion and a doctor doesn't. Anyway, I have an upcoming doc appointment so Ill talk to him about it. Hi, I checked back to mention Sjorgens Disease after I had initially said I couldn't place the dry facial orifices. So, I agree with your new thoughts on that. I also agree that Acute Intermittent Prophyria should be considered. You definetly want to do the candida yeast cleanse. Regardless of the cause of the chronic tongue infection, the fact that it is chronic means it has gone untreated for too long already and it can spread into the esophagus and eventually into other organs. I also think you may want to add diabetes to the blood work I previously mentioned. It could explain some of the symptoms along with the thrush. I don't think that Churg-stauss syndrome or Fabry's disease fit, but you may be experiencing slight things you know make it relevant. I now question the POTS only because the Cymbalta can effect orthostatic hypotension and Serotonin Syndrome. You'll have to think back to make sure the POTS symptoms were present before last year when you started the Cymbalta. Please look at the link; specifically, page 4 of 10 to view precautions about insomnia, orthostatic hypotension, and Serotonin Syndrome. Also, remember anti-depressants like Cymbalta are not indicated for peds under age 24. I tried it in 2005 at about age 25 and had to stop within a week for exacerbating my POTS symptoms. Just be careful. http://www.rxlist.com/cymbalta-drug.htm# How this all started 3 years ago I think is very important. I don't know what caused your particular set of symptoms: heavy metal poisoning, or mushroom or plant poisoning, or if it was a virus like TB, http://www.emedicinehealth.com/tuberculosis/page3_em.htm epstein barr/mononucleosis, or varicella-zoster virus which causes chicken pox, shingles, and Ramsay Hunt syndrome,http://www.nlm.nih.gov/medlineplus/ency/article/000858.htm or a bug bite (I know you said it wasn't Lyme), but there are other mean forest critters. Keep in mind that you may not have the most common symptoms that we hear about, but you may have a long-term chronic blood disease; so, rule out Shingles and TB or anything else you think could remotely be right. If you don't ask the doctors for the specific tests you may need to consider, they won't think of it. Good luck and well being. Thank you very much, I will read those links asap and then get back to you.
    Not Fibro 8 Replies
    • October 9, 2009
    • 07:01 AM
    • 0
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  • Any1 have any more ideas of what it could be? I want to have as many possibilities for my next doctors appointment
    Not Fibro 8 Replies
    • October 11, 2009
    • 07:50 PM
    • 0
    Flag this Response
  • Any1 have any more ideas of what it could be? I want to have as many possibilities for my next doctors appointment It could be a coincidence that these symptoms started after jumpig the fence but it sounds like a tick or something to me...but you said lyme was ruled out. Have you had your vitamins/minerals tested??? These symptoms sound like they could be related to a B12 defiiency...this can mimic fibro....!!! I would start there. Perhaps they can do a hair analysis and see if you have any heavy metal problems, etc. What about celiac disease? What is your diet like? You could try eating whole foods to see if your symptoms get better...staying aways from processed stuff.
    ohfaithful 68 Replies
    • October 12, 2009
    • 03:21 AM
    • 0
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  • Sarcoidosis has MANY of these symptoms and then some. A disease with an UNKNOWN cause. In other words A sneaky ONE THAT GETS overlooked FREQUENTLY. This website has pics if the skin leisions and more. Check it out, it's obviously worth the look. http://www.healthline.com/adamcontent/sarcoidosis
    Anonymous 42789 Replies
    • October 13, 2009
    • 05:16 AM
    • 0
    Flag this Response
  • Hi, I am 15 and I was diagnosed with Fibromyalgia last year (though I have had symptoms for nearly 3 years now) (Also.. i posted this before, didnt get any answers. I am reposting because i am VERY desperate and I really dont know what to do anymore)Im gonna cut to the chase, so here are the symptoms:- Chronic leg pain- Chronic Body pain- Chronic Stomach pain- Chronic shortness of breath- Extremely fast heart rate- Palpitations- SEVERE Insomnia (I sleep only max 4 hours per night, 3 hours average and 6 hours on good nights)- Muscle pain- Bone pain- Chronic thrush infection on the tongue. (that wont go away with antifungal mouthwash ect)- Dry mouth- Dry eyes- Weird purple & white marks that feel like tunnels in my knees (Will post a pic as soon as my camera is charged)- Electrical shocks across my chest and down the side of my chest- Joint painMy family has a history of cancer, heart disease, bleeding disorders.Theres no point in really listing all that ive been tested for.. anything you can think of ive probably been tested.But to rattle some off the top of my head that ive been tested for:Lupus, Lyme disease, Autoimmune conditions, Arthritis, and a LOT moreMore detail on what tests have been done: Ive seen countless doctors, 5 full body CT's, 1 target MRI of the head and ENDLESS amounts of blood tests My doctor says its Fibromyalgia, but I think hes just saying that but really thinks that its all in my head.hi have you looked in to hughes syndrome http://www.hughes-syndrome.org/also porhyria http://www.porphyria.org.uk/facts.htmits also sounds as if your aneamic, sjogens sounds about right but becuase the bloods tests dont show anything yet it may do in years to come. took 4 years before i got diagnoises of lupus. with in the few years after that then got other diagnoises of sjogens and scleroderma etc. mixed tissue connective disorder.is it possible to have lymes, fibro, anemia and sjogen?i have a lot of your symptons. nicola
    Anonymous 42789 Replies
    • October 14, 2009
    • 11:24 AM
    • 0
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  • QUOTE=Not Fibro;199221]Hi, I am 15 and I was diagnosed with Fibromyalgia last year (though I have had symptoms for nearly 3 years now) (Also.. i posted this before, didnt get any answers. I am reposting because i am VERY desperate and I really dont know what to do anymore)Im gonna cut to the chase, so here are the symptoms:- Chronic leg pain- Chronic Body pain- Chronic Stomach pain- Chronic shortness of breath I would definitely have a doctor check you for porphyria...i have been suffering similar symptoms for over 25 years and am getting close to the diagnosis. Porphyria usually starts to show symptoms at puberty, looks like when you started with your problems. It is very hard to detect, and may be misdiagnosed easily. It is a complex disease so I would suggest you pull it up online. Hopefully you dont have to hear its in your head for 25 years like myself!!- Extremely fast heart rate- Palpitations- SEVERE Insomnia (I sleep only max 4 hours per night, 3 hours average and 6 hours on good nights)- Muscle pain- Bone pain- Chronic thrush infection on the tongue. (that wont go away with antifungal mouthwash ect)- Dry mouth- Dry eyes- Weird purple & white marks that feel like tunnels in my knees (Will post a pic as soon as my camera is charged)- Electrical shocks across my chest and down the side of my chest- Joint painMy family has a history of cancer, heart disease, bleeding disorders.Theres no point in really listing all that ive been tested for.. anything you can think of ive probably been tested.But to rattle some off the top of my head that ive been tested for:Lupus, Lyme disease, Autoimmune conditions, Arthritis, and a LOT moreMore detail on what tests have been done: Ive seen countless doctors, 5 full body CT's, 1 target MRI of the head and ENDLESS amounts of blood tests My doctor says its Fibromyalgia, but I think hes just saying that but really thinks that its all in my head.The only way I am going to get diagnosed properly is if I take it into my own hands, I have been to so many websites like this... Im just begging for help, please help me get my life back on track. Thank you very much in advance
    Anonymous 42789 Replies
    • October 15, 2009
    • 04:10 AM
    • 0
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  • Don't underestimate the effects of fibromyalgia. I took it as a "catch-all" diagnoses but it really isn't. The fatigue, pain, brain fog ,etc. forced me to apply for disability whcih I receive. Also be tested for B12. Low B12 can cause many of those symptoms. After discovering that my B12 was low, my elderly parents were tested and found that they also had low B12. Good luck!
    LindaS 3 Replies
    • October 16, 2009
    • 04:52 AM
    • 0
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  • My diet is very.... messed up. I pour salt on everything I eat, I eat a lot of healthy food though, I get a lot of meat in my diet, i dont eat veggies often. But I do love apples, oranges, pears, ect so I eat those most of the time.I'm dealing with some similar stuff and just like you I spent over 20 years going to idiot doctors who can't find anything wrong until 2005 when I started getting answers. It's not that doctors are idiots, it's that if they heal you they have no one to buy their crap medications and overpriced 10 min consultations.You pour salt on everything: me too, that's because of my adrenal fatigue. Have your cortisol levels checked. And whatever you do, don't go on any steroids: they ruined my body and left me obese and worse off than I was. And this is NOT normal fat, it's really hard to lose. Anyway keep using salt but switch to celtic sea salt imported from France. Very important. Table salt as craploads of aluminum and other crap that makes you worse.Like you I ate no veggies, those are super important for magnesium and etc. Buy them, organic if you can. Eat raw as much as you can (spinach with cold cuts without bread), buy them frozen and mostly greens. I found out I have acidosis from a lack of veggies & fruits. So I need to eat acidic veggies & fruits which are alkaline forming in the blood (ie: lemons, kiwis, oranges are acidic but turn your blood alkaline). I drink apple cider vinegar in water before meals and it really helps. I also have severe (as in dangerous) hypoglycemia which has been routinely misdiagnosed. So yeah, false negative. I probably have low thyroid, I ahve all the symptoms but tests are negative. Hypoglycemia is not some trendy illness any idiot coworker (or student in your case) throws lightly when they're super healthy and running marathons on the weekend: it's a serious illness that can kill you. I just started researching acidosis reversing diet via food combining when now I find I need to adjust for hypoglycemia. It can be mind boggling but I am now keeping a food journal and noting everything and time I eat (it was weird the first day as in OMG if I don't write it down no one will read it and they won't judge me for eating so ***n often but I have to do it and it's helping me trace symptoms to foods). I also write the supplements I take. You are lucky, kid. 20 years ago there was no Google. Today I only see a doctor for a blood test but I wont' buy their crap medication and I found I'm better off doing search on my own. I was in a coma early this year and when I came to I did research and traced it to lack of B vitamins (I was told to eat no grains and to not take B vitamins by another doctor and this could have killed me). When all else fails, prayer moves energy that helps. That's how Google landed me on the right sites. Good luck to you, kid. Hope you don't waste 20+ years like me.
    Anonymous 42789 Replies
    • October 16, 2009
    • 07:24 AM
    • 0
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  • Any1 have any more ideas of what it could be? I want to have as many possibilities for my next doctors appointmentHave you looked into Conn's syndrome? I have had a lot of the same symptoms for a year now, have seen tons of doctors and now am going to an endocronoligist because I have been online researching and think that's what I haveBridget
    Anonymous 42789 Replies
    • October 16, 2009
    • 03:03 PM
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  • well,theres i guess no easy way to say this but you must prepare yourself for you are looking straight down the barrell of a straight jacket. Thats what i was going to ask are you by any chance on any prohibited drugs? Maybe hallucenegetics like trips, extacy, ghb, gbl, cocaine or ice perhaps?...the doctor asks looking at you in the eyes as if to say go on tell me the truth im on the right track and now dont you dare ask because if you were to in anyway suggest the insomnia they immediately assume your a bendozapine addict. I feel ya, i feel ya, i feel ya well i cant help ya all that much but i feel ya! See heres my story cause well everyone loves to talk about themselves in the last two years doctors have convinced me and i have infact shown the symptoms alot are similar to yours i have also even taken medications for the following which clearly now i dont believe i ever had but back then dont dare say im wrong or i will do your head in trying to prove it. Anyway here goes at first i was told i may have a rare parasite worm that usually exists in malaysia or sth africa appart from the main factor that i hadnt travelled to neither country quite clearly the symptoms were all of that of a worm at the hospital not long after i presented with a worm trying to break through my neck into my head so it could enter my brain. Quite understandably the cheeky look from the nurse and theres the drug question? At my wits end and with it slightly agitated as u do become i found myself to be held under the mental health act. Whilst there i came to the conclusion the only way out of there was to convinced them i belived them and now that i realize i have psychosiss i will start taking the medication so i dnt have another episode for if i kept contesting i were right id still be there today. Really i do still think i have this worm but shh i keep it quiet i decided to call him farkwad as he delivers me a sharp pain i say fark ..wad. Still people still stare. Farkwads medical term strongyloides look it up its sure to do ur head in, or u may just find a friend your own farkward. And with strongyloides (a type of tapeworm) out of 10 people that have it only 1 will come up positive and if u find yourself starting to spit alot dont worry i bring up around a litre a day though my record was a 2L cotties cordial bottle full. Im not mad really im not and im not on ice and farkwad i mean the worm no longer exists. You think i sound mad? If only you knew what normal people think of your pathetic plea for help. Its time youve crossed over all thats left to console u is now your mind u are one of us crazy people. Warm welcomings to u! Leave the spirits alone and they too will leave you alone my names nat if u wnt to talk to me again your most welcome to send out a plea for dr nats sad but true help. Brains fried we gotta i mean i gotta go.x
    Anonymous 42789 Replies
    • October 17, 2009
    • 03:56 AM
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  • Hi, I am 15 and I was diagnosed with Fibromyalgia last year (though I have had symptoms for nearly 3 years now) (Also.. i posted this before, didnt get any answers. I am reposting because i am VERY desperate and I really dont know what to do anymore)Im gonna cut to the chase, so here are the symptoms:- Chronic leg pain- Chronic Body pain- Chronic Stomach pain- Chronic shortness of breath- Extremely fast heart rate- Palpitations- SEVERE Insomnia (I sleep only max 4 hours per night, 3 hours average and 6 hours on good nights)- Muscle pain- Bone pain- Chronic thrush infection on the tongue. (that wont go away with antifungal mouthwash ect)- Dry mouth- Dry eyes- Weird purple & white marks that feel like tunnels in my knees (Will post a pic as soon as my camera is charged)- Electrical shocks across my chest and down the side of my chest- Joint painMy family has a history of cancer, heart disease, bleeding disorders.Theres no point in really listing all that ive been tested for.. anything you can think of ive probably been tested.But to rattle some off the top of my head that ive been tested for:Lupus, Lyme disease, Autoimmune conditions, Arthritis, and a LOT moreMore detail on what tests have been done: Ive seen countless doctors, 5 full body CT's, 1 target MRI of the head and ENDLESS amounts of blood tests My doctor says its Fibromyalgia, but I think hes just saying that but really thinks that its all in my head.The only way I am going to get diagnosed properly is if I take it into my own hands, I have been to so many websites like this... Im just begging for help, please help me get my life back on track. Thank you very much in advanceHave you ever been tested by blood or ****k test for multiple allergies? Also try not eating anything with wheat, barley or rye for more than 2 weeks and see if your symptoms alleviate.
    Anonymous 42789 Replies
    • October 17, 2009
    • 05:59 PM
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  • Hey guys, I just quickly read all the posts, and put them down on paper.I would answer, But I am about to leave for the walk-in-clinic. Before i go though, I thought id ask If any1 knew what could cause a small lump to appear in my cheek (Its not in the gumns, and I havent noticed it before so its not a tooth) Anyway, thank you all for your answers! I will reply to each post that was written after my last post when I get back
    Not Fibro 8 Replies
    • October 17, 2009
    • 08:29 PM
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  • Hey guys, I just quickly read all the posts, and put them down on paper.I would answer, But I am about to leave for the walk-in-clinic. Before i go though, I thought id ask If any1 knew what could cause a small lump to appear in my cheek (Its not in the gumns, and I havent noticed it before so its not a tooth) Anyway, thank you all for your answers! I will reply to each post that was written after my last post when I get back Best of luck with your doctor's appointment! If your mother gets B12 shots, there is a HUGE possibility that you are B12 deficient because it is HEREDITARY! Testing for this includes serum B12, MMA, and homosystein testing... You may want to jump over to the B12 Misdiagnosed thread...it is long over 1000 pages and the experts can help you better over there! I would not start ANY SUPPLEMENTING until you get those tests done! B12 deficiency can cause other deficiencies in the body leading to autoimmunite disorders! You also need to clean up your diet...start with just eating fruits, veggies, and clean meat...no processed stuff and see how you feel. Do this for two weeks and then slowly add one food back to your diet and keep a diary of what you ate and how you feel before and after each meal. Unfortuatey, you have to become your own detective! Most people think that you have to have Celiac Disease to be allergic to gluten, but some people are simply GLUTEN intolerant and gluten is in MOST PROCESSED FOODS! Once I started on whole foods a lot of my extreme symptoms improved enough to keep me out of the hospital frequently! If I do occasionally eat something processed, I follow it up with apple cider vinegar (Braggs's with the mothe) which detoxes all of the toxins quickly! Good luck and keep us posted! You are very couragous!!!;)
    ohfaithful 68 Replies
    • October 17, 2009
    • 10:32 PM
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  • Hey guys. Doc app didn't go well. He pretty much ignored me. Anyway... moving on :l I found a small little lump IN my cheek (not in the gums) Its about the size of a nickle And at the same time when i found this lump for the whole week I have had extreme pain in my neck shooting up into my head, and now my jaw is starting to hurt a lot (at, and around the lump) Does any1 have any idea what this lump could be? its kinda scaring me because im starting to freak out and think its cancer
    Not Fibro 8 Replies
    • October 19, 2009
    • 06:30 PM
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