I was diagnosed with fibro a year ago by my family dr. Frusterated that I was constantly sick and she wasnt doing anything to help me, I switched Drs and my new Dr found many new things to add to my diagnosis. She diagnosed me with hypothyroidism. But I still have many symptoms and noe of the other test have showed anything. I have had a complete blood work up, EMGs, and MRi scan of my brain and nothing has been found. She is referring me to a neurologist and rhemetologist. I have a complete list of my symptoms below. If anyone can think of anything, please tell me. I am at a complete loss. My symptoms are so bad that I have to use a cane if I walk, and I am only 23.
Symptoms: fatigue (sometimes it hits me very suddenly and no matter what i am doing, i have to lie down and rest immediately) dibilitating headaches sleepiness tounge biting(most of the time i dont even realize i am doing it) generalised weakness temporary paralasis (mostly in my legs) swollen joints "cracking" in my knees, wrists, back and ankles a raised rash on my arms, face and legs morning stiffness that last between 1-2 hours ( I can not move in the mornings because of the pain in my body, also my hands will get stuck in weird positions and be very cold; and i have to apply pressure to them to get them moving again and once they do, my hands get really hot and tingly) lightheadness and dizziness lack of energy shaking myoclonic reflexes (I get these when I am sleeping and when I am awake, I dont always feel them either) generalized pain (the pain is deep, aching, radiating, gnawing, shooting, burning and throbbing. sometimes the pain is so bad all I can do is scream into a pillow, my entire body will be busrtsing with pain) elevated sed. rate low red blood cell count hair loss weight gain intolerance to cold memory problems(I have difficulty recalling events; preforming calculations; not recognizing familiar people or places; trouble finding the right words to express thoughts and names of objects; solving abilities; learning ability and judgment. I have post it nostes over my entire house. simple task like making kool aid, i have to write down or else i forget to do it and how to do it)
If anyone has any ideas, I would appeciate them. Thanks!
Oh my. You are having such a bad time. A lot of the symptoms you list are shared by fibro sufferers. As you probably already know, there isn't a test for fibromyalgia. It's mostly an elimination of illnesses as you go from test to test. When nothing shows up on the lab stuff, the diagnosis is oftentimes fibromyalgia.
Have you ever been exposed to bug sprays or environmental poisons of any sort? Have you tried going on an organic diet?
I feel so for you; but keep in mind, you have more power than you realize. You keep going until you get your answers and never, ever give up. Hope will keep you going until you find the end of this medical mystery trail. Many on this board have journeyed this path, and it can be arduous.
Some of us have an autoimmune disease in addition to fibro. AI diseases as a whole are not rare for females in the 20 to 50 yr. old age group. While I don't wish any disease on you, it's good to know that the majority of these are treatable & that with treatment people generally experience improvement. A rheumatologist is the doc who usually diagnoses AI diseases.
Have you been fully tested for lyme disease & other chronic, insidious infections? These can mimic the symptoms of fibro & autoimmune disease.
Are you on thyroid meds & do you regularly get copies of your thyroid labs (blood tests)? Many docs go only by the TSH test, but most folks with fibro do best when thyroid meds are dosed to raise the free hormone levels to normal. That requires testing for Free T3 & Free T4 on a regular basis.
I agree with Kirstee about toxic stuff. It is generally bad for thyroid, and in some people (I am one) some of these things can cause severe fibro flares.
I know it is frustrating, and maybe also a bit scary, to potentially face an additional diagnosis. But the good news is, your MRI, EMG, & bloodwork are normal. That's great! You know there are hundreds of nasty dxs that you are off the hook for, because of those great, normal test results.
I hope your visits to the specialists will help you find treatments that are helpful. In the meantime, if there is a wait to see those docs, it's not a bad idea to do some reading. There are many good books out there, but my favorite is From Fatigued to Fantastic, by Jacob Teitelbaum, MD. You may be able to find it at your local public library, as I did. This book will open your eyes to the many possible causes of fibro pain, and to the many conventional medical, alternative med, and self-help strategies that can be used to improve quality of life.
I was diagnosed with fibro a year ago by my family dr. Frusterated that I was constantly sick and she wasnt doing anything to help me, I switched Drs and my new Dr found many new things to add to my diagnosis. She diagnosed me with hypothyroidism. But I still have many symptoms and noe of the other test have showed anything. I have had a complete blood work up, EMGs, and MRi scan of my brain and nothing has been found. She is referring me to a neurologist and rhemetologist. I have a complete list of my symptoms below. If anyone can think of anything, please tell me. I am at a complete loss. My symptoms are so bad that I have to use a cane if I walk, and I am only 23.
Symptoms: fatigue (sometimes it hits me very suddenly and no matter what i am doing, i have to lie down and rest immediately) dibilitating headaches sleepiness tounge biting(most of the time i dont even realize i am doing it) generalised weakness temporary paralasis (mostly in my legs) swollen joints "cracking" in my knees, wrists, back and ankles a raised rash on my arms, face and legs morning stiffness that last between 1-2 hours ( I can not move in the mornings because of the pain in my body, also my hands will get stuck in weird positions and be very cold; and i have to apply pressure to them to get them moving again and once they do, my hands get really hot and tingly) lightheadness and dizziness lack of energy shaking myoclonic reflexes (I get these when I am sleeping and when I am awake, I dont always feel them either) generalized pain (the pain is deep, aching, radiating, gnawing, shooting, burning and throbbing. sometimes the pain is so bad all I can do is scream into a pillow, my entire body will be busrtsing with pain) elevated sed. rate low red blood cell count hair loss weight gain intolerance to cold memory problems(I have difficulty recalling events; preforming calculations; not recognizing familiar people or places; trouble finding the right words to express thoughts and names of objects; solving abilities; learning ability and judgment. I have post it nostes over my entire house. simple task like making kool aid, i have to write down or else i forget to do it and how to do it)
If anyone has any ideas, I would appeciate them. Thanks!
Did your doctor mention anything about Lupus, with all your symptoms it looks like it msybe Lupus along with Fibro....
Actually I had mentioned lupus to her because my grandmother, her brothers, 3 of her sons, and her father and his brother all have lupus and RA. She did a test on my ANAs and that was normal. Ive been trying my best to reserch lupus. Is it possible to have lupus and not test on the ANAs? My dr wants me to see a rhemetologist and a neurologist. The only problem is that they are both about an hour an a half from me in opposite directions. I dont think i can drive an hour and half, have a drs appt then drive an hour and a half home without falling asleep or having extreme pain. I contacted an adult service in my town about possible transportation. I was also tested for myasthenia gravis (because of my thyroid) and lyme's disease and those were both negative. I am so confused about what is going on with my body and even more frusterated because I cant do anything to controll it. Thanks for your input!
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