Discussions By Condition: I cannot get a diagnosis.

Unexplained Tiredness, Stiffness, & Fainting - 22 Years Old

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: imosteve
  • January 25, 2008
  • 01:24 AM

1) Since the age of 18, (I am 22 now), I have "fainted" 5 times. Originally people seem to think they are seizures, but further tests indicate they are not (will describe later). They all occurred right in the morning upon standing

2) I also experience extreme tiredness / lack of motivation throughout the day. This has been happening since I was about 15 or 16. I can't concentrate, and even after a couple hours of being awake (no matter how much sleep I get) I could go back to sleep.

3) Along with the tiredness comes extreme lower body stiffness. Of all the doctors I have seen, they often seem amazed and describe me as "inflexible." I never noticed this before because it has been this way my entire life. My legs look like the legs of a runner who runs marathons everyday for many years. However, I have never worked out my legs.

4) Half of the time that I stand up, I feel lightheaded and lose vision. No matter how slow I stand up, this always happens. My vision will go blurry-black, and if I wait a few seconds I will feel fine.

All of these seem to be related. Here are the tests/medications I have gone through with no results:

A) Sleep Deprived EEG: When I was 18 and had fainted (with slight twitching) the first time they did this to check for seizures. Results: possible abnormal result. Took Lamictal as a precaution. However, a year later, nothing felt better and I fainted again. The doctors, after performing other seizure tests, decided that it wasn't this, especially since right after I faint I am aware of where I am and what I am doing.

B) Tilt Table Test: I was tested on a tilt table at Cleveland Clinic and fainted for 10 seconds. They said that I had a form of Syncope. I have tried these medicines for this: Florinef, Staying extremely hydrated, ensuring I have lots of salt, Midodrine, compression socks. None of these - not one of them, helped with the stiffness, dizziness, tiredness, or fainting.

C) Due to constant tiring, doctor prescribed adderral. This is the only medicine that has helped me stay awake. But even after a few hours, I get tired on this as well. The doctor (at Johns Hopkins), did the standard tests and said that my legs are inflexibile and suggested I go to physical therapy to get the circulation flowing better. Legs are essentially hard as a rock, always stiff, always sore. I went to a physical therapist, and no matter how much stretching and healing I did, nothing ever worked, and I am still extremely stiff.

D) Went to an orthopedic surgeon to see if it was a muscoskeletal problem, and he X-Rayed by back to see if I had Stenosis, in which the nerves in my lower back are trapped and are putting my legs in this stiff position. He said everything came back fine.

E) Went to an endocronologist to test thryroid (I currently take 137 mcg of synthroid). Result is that thyroid is working correctly. Also took an adrenal gland test, results were normal, and all vitamin / blood tests were normal, including B12.

Currently
Doctors are running out of ideas. This seems to be related to my stiff legs. I got professional massages and stretched them as much as possible, and they never budge. What seems to be my veins/arteries are extremely hard. When people put their hands on them they feel like bones. I am also still constantly tired and cannot concentrate. Its a feeling of apathy, but not depressive or anything.

Also, there is NO pain the in the legs when just doing normal activities. However, there IS pain when stretching and there IS a very sharp pain when I run my finger along my legs. The pain is symmetrical on both sides, and there are certain "points" such as the upper calf, that the pain can be much worse. It almost feels like a very tender bruise that never goes away.

Are Ideas?

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6 Replies:

  • Why are you on the synthroid?Have you ever been diagnosed with autoimmune thyroiditis? (Hashimoto's Thyroiditis?). This means your white blood cells make antibodies that destroy your thyroid gland. A rare complication of autoimmune thyroiditis exists and is called Hashimoto's Encephalopathy, also known as SREAT, steroid responsive encephalopathy associated with autoimmune thyroiditis.I was diagnosed in April with HE after years of fatigue, bad headaches, balance problems, subtle neuro symptoms, and years of what I believe were thyroid symptoms, including tiredness, dizziness and trouble keeping my blood pressure, although I never fainted... plus others.Hashimoto's Encephalopathy is sort of a newly recognized phenomenon, so not too many doctors know about it yet. It presents differently in each patient. If you have it, it could explain your EEG changes (almost 100% of HE patients have abnormal EEGs), your potential seizures, your apathy, fatigue, daytime somnolence (some patients have gone into comas even),concentration problems, and the leg stiffness (HE can produce a stiff-person like syndrome or even look like spastic paraparesis, although I'm not sure either of these fit your case). There's a long list of potential symptoms you can have with HE, and you do not have to have all or even most of them (I had maybe five or six). I don't know if you will think this fits you, or if you even have Hashimoto's thyroiditis, but I'd thought I'd throw this out to you since I went 8 years undiagnosed (I did not even know I had a thyroiditis- my hormone levels were always okay, which is true of many HE patients). This was a very painful experience for me, as many doctors discounted my symptoms but I felt very ill.Another thing that comes to mind is perhaps celiac disease. If you have autoimmune thyroiditis, you are at increased risk for celiac, which can cause a wide variety of symptoms. You don't have to have GI symptoms, either.I am sorry you do not know what you have yet. I hope you find answers, whatever they may be.Best Wishes!
    Anonymous 42789 Replies
    • January 25, 2008
    • 08:24 AM
    • 0
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  • What is Hypertonia?Hypertonia is a condition marked by an abnormal increase in muscle tension and a reduced ability of a muscle to stretch. It is caused by injury to motor pathways in the central nervous system, which carry information from the central nervous system to the muscles and control posture, muscle tone, and reflexes. When the injury occurs in children under the age of 2, the term cerebral palsy is often used. Hypertonia can be so severe that joint movement is not possible. Untreated hypertonia can lead to loss of function and deformity. Hypertonia may result from injury, disease, or conditions such as spasticity, dystonia (prolonged muscle contractions that cause twisting and repetitive movements or abnormal posture), rigidity, or a combination of factors. Spastic hypertonia involves uncontrollable muscle spasms, stiffening or straightening out of muscles, shock-like contractions of all or part of a group of muscles, and abnormal muscle tone. It is seen in disorders such as cerebral palsy, stroke, and spinal cord injury. Dystonic hypertonia refers to muscle resistance to passive stretching (in which a therapist gently stretches the inactive contracted muscle to a comfortable length at very low speeds of movement) and a tendency of a limb to return to a fixed involuntary (and sometimes abnormal) posture following movement. It is seen is the different forms of dystonia and sometimes in parkinsonism. Rigidity is an involuntary stiffening or straightening out of muscles, accompanied by abnormally increased muscle tone and the reduced ability of a muscle to stretch. This type of hypertonia is most common in parkinsonism Is there any treatment?Drugs such as baclofen, diazepam, and dantrolene may be prescribed to reduce spasticity. All of these drugs can be taken by mouth, but baclofen may also be injected directly into the cerebrospinal fluid. Injections of botulinum toxin are a recent treatment for chronic hypertonia in cerebral palsy, spasticity, and other disorders. Rehabilitative treatment may involve range of motion exercises, active stretching exercises, and occupational therapy. In severe cases, clinicians may use selective dorsal rhizotomy, a surgical procedure in which the nerves that cause spasticity are cut. Dystonic hypertonia and rigidity can be treated with therapies directed to the underlying disorders. What is the prognosis?Hypertonia is sometimes painful and can lead to functional limitation, disability, or, in severe cases, reduced quality of life. What research is being done?NINDS supports research on brain and spinal cord disorders that can cause hypertonia. The goals of this research are to learn more about how the nervous system adapts after injury or disease and to find ways to prevent and treat these disorders. Select this link to view a list of studies currently seeking patients. OrganizationsDystonia Medical Research Foundation1 East Wacker DriveSuite 2430Chicago, IL 60601-1905dystonia@dystonia-foundation.orghttp://www.dystonia-foundation.orgTel: 312-755-0198Fax: 312-803-0138Christopher and Dana Reeve Foundation636 Morris TurnpikeSuite 3AShort Hills, NJ 07078info@christopherreeve.orghttp://www.christopherreeve.orgTel: 973-379-2690 800-225-0292Fax: 973-912-9433United Cerebral Palsy (UCP) Research & Educational Foundation1025 Connecticut AvenueSuite 701Washington, DC 20036national@ucp.orghttp://www.ucpresearch.orgTel: 202-496-5060 800-USA-5UCP (872-5827)Fax: 202-776-0414 You probably know all this, but have you tried baclofen or botox? Here are some other possibilities.Disorders of spinal cord, peripheral nerve, muscle, or connective tissue. Such disorders include startle syndromes, stiff person syndrome, http://pediatrics.aappublications.org/math/agr.gif (alpha)motorneuron dysfunction, myotonia, neuromyotonia, myokymia.
    rad-skw 1605 Replies
    • January 25, 2008
    • 09:36 AM
    • 0
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  • Syncope is just another word for fainting. Fainting on standing can be caused by low BP? Have you got low BP? ..or maybe it's something like POTS (posteral orthostatic tachycardia). I suggest you look up Posteral orthostatic tachycardia online. I myself have POTS and have found that most doctors know nothing at all about that condition.. in fact most of them have never heard of it. POTS is a very common conditon for ones with chronic fatigue syndrome to have. This is a long shot, im not currently thinking you have this.. but On the subject of CFS. Does your tiredness seem much worst "post exertionally" (come in some time after mental or physical exertion or during it) and is it not just mental fatigue..but also physical body fatigue too after exercise???? (With CFS can come all kinds of weird problems etc as it can affect the whole body so hence my questions about the tiredness)
    taniaaust1 2267 Replies
    • January 25, 2008
    • 10:57 AM
    • 0
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  • Hello, you sound like my daughter. Shes your age. We were told that she may have a form of epsteinebarr. She has to take (1) vitiam D -3, 2000 iu a day plus a multi vitiam with no irom (for women) or at least one that is plant based iron not the mimarel based ones. as of today we are on day 3.Our doctor says she'll be on them for life. But if that is the worst she has to do, that not a bad thing. Best of luck.1) Since the age of 18, (I am 22 now), I have "fainted" 5 times. Originally people seem to think they are seizures, but further tests indicate they are not (will describe later). They all occurred right in the morning upon standing 2) I also experience extreme tiredness / lack of motivation throughout the day. This has been happening since I was about 15 or 16. I can't concentrate, and even after a couple hours of being awake (no matter how much sleep I get) I could go back to sleep. 3) Along with the tiredness comes extreme lower body stiffness. Of all the doctors I have seen, they often seem amazed and describe me as "inflexible." I never noticed this before because it has been this way my entire life. My legs look like the legs of a runner who runs marathons everyday for many years. However, I have never worked out my legs. 4) Half of the time that I stand up, I feel lightheaded and lose vision. No matter how slow I stand up, this always happens. My vision will go blurry-black, and if I wait a few seconds I will feel fine. All of these seem to be related. Here are the tests/medications I have gone through with no results: A) Sleep Deprived EEG: When I was 18 and had fainted (with slight twitching) the first time they did this to check for seizures. Results: possible abnormal result. Took Lamictal as a precaution. However, a year later, nothing felt better and I fainted again. The doctors, after performing other seizure tests, decided that it wasn't this, especially since right after I faint I am aware of where I am and what I am doing. B) Tilt Table Test: I was tested on a tilt table at Cleveland Clinic and fainted for 10 seconds. They said that I had a form of Syncope. I have tried these medicines for this: Florinef, Staying extremely hydrated, ensuring I have lots of salt, Midodrine, compression socks. None of these - not one of them, helped with the stiffness, dizziness, tiredness, or fainting. C) Due to constant tiring, doctor prescribed adderral. This is the only medicine that has helped me stay awake. But even after a few hours, I get tired on this as well. The doctor (at Johns Hopkins), did the standard tests and said that my legs are inflexibile and suggested I go to physical therapy to get the circulation flowing better. Legs are essentially hard as a rock, always stiff, always sore. I went to a physical therapist, and no matter how much stretching and healing I did, nothing ever worked, and I am still extremely stiff. D) Went to an orthopedic surgeon to see if it was a muscoskeletal problem, and he X-Rayed by back to see if I had Stenosis, in which the nerves in my lower back are trapped and are putting my legs in this stiff position. He said everything came back fine. E) Went to an endocronologist to test thryroid (I currently take 137 mcg of synthroid). Result is that thyroid is working correctly. Also took an adrenal gland test, results were normal, and all vitamin / blood tests were normal, including B12. CurrentlyDoctors are running out of ideas. This seems to be related to my stiff legs. I got professional massages and stretched them as much as possible, and they never budge. What seems to be my veins/arteries are extremely hard. When people put their hands on them they feel like bones. I am also still constantly tired and cannot concentrate. Its a feeling of apathy, but not depressive or anything. Also, there is NO pain the in the legs when just doing normal activities. However, there IS pain when stretching and there IS a very sharp pain when I run my finger along my legs. The pain is symmetrical on both sides, and there are certain "points" such as the upper calf, that the pain can be much worse. It almost feels like a very tender bruise that never goes away. Are Ideas?
    Anonymous 42789 Replies Flag this Response
  • B) Tilt Table Test: I was tested on a tilt table at Cleveland Clinic and fainted for 10 seconds. They said that I had a form of Syncope. I have tried these medicines for this: Florinef, Staying extremely hydrated, ensuring I have lots of salt, Midodrine, compression socks. None of these - not one of them, helped with the stiffness, dizziness, tiredness, or fainting. People with POTS may faint/syncope on that test. Tilt table testing is how they test for POTS. POTs can be hard to treat and all those treatments you were suggested are POTS ones which may or may not work for a person with POTS. You say you tried to fix issue by staying extremely hydrated. I myself have POTS and to help my symptoms (it dont cure them thou.. just helps me last longer time being upright without them), the level of hydration I need to maintain is drinking 5-7 Litres of sports drinks per day (20-28 cups) .. (one cant drink that much water as it would probably be dangerous..so hence one needs sports drinks). Some with POTS need daily IV drip of saline to help ward off the symptoms. Your leg issue could be connected in some way??? as POTS is said to be caused by blood pooling in the legs and abdomen etc. best luck
    taniaaust1 2267 Replies Flag this Response
  • It could be hypertonia and chronic orthostatic intollerance. Those have both been suggested but it could be both.
    davidmt2 18 Replies Flag this Response
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