jake87
07-24-2007, 08:53 AM
I’m currently 20 years old and have had one long migraine for the past ten years. I also have had asthma and ibs like symptoms during the same period. The past year I have developed severe pain in my muscles and joints - the doctor diagnosed me with fibromyalgia. There is definatly a genetic factor as my father used to get migraines and my mother currently gets migraines and has rheumatoid arthritis. (And no, its not all in my head as some like to suggest, as my parents purpossely did not tell me about there problems till after I had developed mine.) I have seen the top doctors in the country but they have been next to useless. I have been on over a hundred medications for the different problems, alternative meds, herbal, surgery, diets, hospital stays, meditation, therapy, and pretty much anything else you can name. BUT IF THERE IS SOMETHING THAT SOMEONE CAN SUGGEST PLEASE DO. Im so wiped out from all the pain that by midday i have no energy left. I’m only 20 and I have forgotten what it feels like not to be in pain....please help
Sponsor
mod-anon
07-24-2007, 01:18 PM
Please post your question on one board only.
This post will remain, but the others have been removed.
This post will remain, but the others have been removed.
ticker
07-24-2007, 03:52 PM
Hi Jake. I am sorry you have been feeling bad for so long. I know it is frustrating.
You may want to consider Lyme disease as possibility. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Lyme disease is the second fastest growing infectious disease in the US and the number one vector-borne disease in the US. I believe that NY has the highest number of cases in the nation.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possibility, it is very important to see a knowledge- able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
If you think this may be a possibility if you would like doctor recommendations, let me know. There is a Lyme disease site on this board, and the people there are great.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
Do not give up! You will find out what is wrong.
You may want to consider Lyme disease as possibility. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Lyme disease is the second fastest growing infectious disease in the US and the number one vector-borne disease in the US. I believe that NY has the highest number of cases in the nation.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possibility, it is very important to see a knowledge- able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
If you think this may be a possibility if you would like doctor recommendations, let me know. There is a Lyme disease site on this board, and the people there are great.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
Do not give up! You will find out what is wrong.
jake87
07-24-2007, 04:05 PM
unfortunatley i have already been tested, but i do appreciate the response
georgie04
07-24-2007, 04:56 PM
Jake, have your doctors definitively ruled out an autoimmune thyroid condition? I too have a parent with ra who also didn't tell me until after my diagnosis of a thyroid problem.
My symptoms included severe muscle and joint pain, and extreme fatigue, and the rheumatologist's first thought was fibro, but luckily for me he pursued things further and tried me on thyroid meds. My thyroid tests at that stage were still borderline normal, but he had enough experience to be concerned about the levels (and not all doctors do!!). After only a couple of weeks of thyroid meds most of my pain was gone. There are some very knowledgable people on the thyroid board here - if you have copies of results you can post them there for some input.
Despite my dramatic results on the meds my regular doctor at the time swore black and blue it was not thyroid, I got a third opinion from an endocronologist who agreed that my test results didn't indicate a problem, BUT given my response to meds did not have a problem with me continuing. Apparently my experience is not uncommon, so you need to be persistent and choosy about doctors, and prepared to get more than one opinion if you feel this may be a possibility for you.
As far as the migraine goes, my only thought is to check that you have been tested for antiphospholipid syndrome - it is an autoimmune-related condition which causes 'sticky' blood. Just a suggestion!!
I hope you get some answers soon.
My symptoms included severe muscle and joint pain, and extreme fatigue, and the rheumatologist's first thought was fibro, but luckily for me he pursued things further and tried me on thyroid meds. My thyroid tests at that stage were still borderline normal, but he had enough experience to be concerned about the levels (and not all doctors do!!). After only a couple of weeks of thyroid meds most of my pain was gone. There are some very knowledgable people on the thyroid board here - if you have copies of results you can post them there for some input.
Despite my dramatic results on the meds my regular doctor at the time swore black and blue it was not thyroid, I got a third opinion from an endocronologist who agreed that my test results didn't indicate a problem, BUT given my response to meds did not have a problem with me continuing. Apparently my experience is not uncommon, so you need to be persistent and choosy about doctors, and prepared to get more than one opinion if you feel this may be a possibility for you.
As far as the migraine goes, my only thought is to check that you have been tested for antiphospholipid syndrome - it is an autoimmune-related condition which causes 'sticky' blood. Just a suggestion!!
I hope you get some answers soon.
georgie04
07-24-2007, 05:00 PM
Me again, have you also been tested for lupus? It is much more common in women so not high up on the candidate list from many doctors' perspectives. The ibs and migraine symptoms can occur in that condition.
ticker
07-24-2007, 07:44 PM
Hi Jake. Do you know which test was done? No Lyme test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.
I recommend that you have a Western Blot test done at IgeneX Lab in Palo Alto, CA. They use more sensitive testing and list more bands. Realize that the CDC requires a large number of bands to show for it to be considered positive, yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.
I recommend that you have a Western Blot test done at IgeneX Lab in Palo Alto, CA. They use more sensitive testing and list more bands. Realize that the CDC requires a large number of bands to show for it to be considered positive, yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.