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wondering if fibro is my problem
3 Replies
curvytulip32 - August 25

I have been doing some research in to firbomyalgia recently due to some mysterious health problems I have been having for the last few months. When I read about the compaints of this severe pain that everyone talks about it makes me question if this might be my problem or not. There are only two areas of pain that I have. The first is an almost constant headache. Various places and various degrees, but still almost always there. The second is a recent onset of severe knee pain, but only when they have been contracted. if i bend my knees completely I have severe pain when attempting to straighten them out. It started in the left knee about 2 months ago and has recently spread to both knees. My original diagnosis was arthritis and I was already taking a prescription NSAID for arthritis to my right 1st large knuckle. This hasn't helped at all with my knees. But let me tell you about the most frustrating part. In April of this year I started having what I call "episodes" of numbness and tingling in my lips, decreased sensation in my tongue along with blurred vision and some serious "fogginess" with my thinking. So bad that at one time I watched a softball hit me in the calf and didn't even register that I was supposed to try to catch it. These "episodes" lasted for 2-3 days at a time and came every 1-2 weeks. After a clear MRI to rule out MS, I was referred to a neurologist. An EEG was performed which caused a reaction to the gel used for the probes that made my skin red and blotchy over my whole body. This test was also negative. The neurologist diagnosed me with "burning mouth syndrome" which did not explain one thing. Neurontin was started which only caused severe drowsiness without any symptom relief. I have etreme difficulty falling asleep and can sleep for 10 hours or more and still feel tired. Add to the mix chronic constipation problems, no motivation, my sex drive is non existent, and despite all attempts I have been unable to lose any weight. Stress incontinence despite a bladder sling placement and I am VERY forgetful. I am a very capable nurse who at times cannot even complete a sentence, forget being able to remember everything I need to do in a day. I get extremely tired in the afternoon no matter how late I slept that day and constantly waking up during the night. I appear to have all of the syptoms i have looked up ecept for the pain. This is driving me crazy and I'm not really sure where to turn anymore. I try to stay active and play softball 3-5 days a week but can't seem to find the energy to change my sheets. Any suggestions?


axxie - August 25

Welcome Curvytulip32, gees I love your pseudo name, I would have never tought that one! lol

Gees, I'm no doctor, actually none of us are, but the problems you describe don't add up to fibro that's for sure.

I toying with the idea that maybe what you have is simply running out on hormones.... ie, could be your thyroid, that you would have to ask your doctor to send you for T3 and T4 not the random test. I had the exact same problems believe it or not, I was in my early 40's and slowly all these problems appear magically. At first doctor could'nt tell me what was wrong with me. After a year of I don't know what wrong with you, I happen to be talking to an friend, someone said see a specialist for thyroid disorder. Sure enough, my randomn test all came in ok, but sure enough when he did reverse t3 and t4, it came back with problems. Hence I was put on the lowest dose of synthroid and voila no more sleeping in the afternoon, no more forgetting and best of all energy to boot. M other pain that I had seem to magically disapear.
Could it be possible that your problem is you have a under active thyroid that random tests don't show. If you happen to be in the States, book yourself to a thyroid specialist, fill out the questionaire and get tested.

As for the headache, could be stress induce from you worrying about what you might have, it causes your muscle to tighthen and voila a little numbness. Could be a disk problem, it will cause you the same symptoms.

I'm no doctor but just maybe something was overlook. I have had problems with my back and the numbness was attributed to nerves being pinched it gave me headache and pain in my back and I can't forget the numbness.

I am hoping you find out what is wrong, but I would deffinately go the route of seeing a specialist for thyroid disease.

Good luck to you, but by the looks of it, it doesn't look like you have fibro, which is a good thing, trust me.


axxie - August 25

Hey Curvytulip32, I forgot to add some information on fibromyalgia, sometimes I

What is Fibromyalgia?
Pain, Fatigue, Fibro Fog & More - All Part of Fibromyalgia Syndrome

Fibromyalgia syndrome is a chronic condition that causes intense pain in various places around the body, including muscles, connective tissues and joints, as well as a host of other symptoms. It affects more than 6 million people in the United States.

Doctors classify fibromyalgia as a syndrome, which means it has a group of signs, symptoms and characteristics that occur together.

To make a diagnosis, doctors usually rely on signs and symptoms alone. Complicating the matter, symptoms vary widely from person to person and often, as do their intensity.

Symptoms of Fibromyalgia
People with fibromyalgia frequently hurt all over and feel exhausted all the time. Those symptoms often force you to seriously limit your physical activity. It's also common to have problems concentrating and remembering things. A lot of people with fibromyalgia have symptoms so severe that they have to quit or modify their jobs.

Because fibromyalgia is frequently misunderstood, family, friends, co-workers and even medical providers may not believe the person is actually sick. A proper diagnosis often takes months at the very least, I found people on this board had it for years before they where diagnosed.

Keep in mind that the signs and symptoms vary widely from one person to another. Some people have only a few, while others have many. The intensity of symptoms is different in everyone as well, ranging from mildly annoying to highly debilitating.

Common symptoms of fibromyalgia:
Widespread pain
Chest pain
Morning stiffness
Sleep disorders
Cognitive or memory impairment (“fibro fog”)
Abdominal complaints
Frequently, people with undiagnosed fibromyalgia don't realize that a host of secondary symptoms are related to the pain, fatigue and other primary symptoms. Keeping a detailed list of symptoms can help your doctor make a diagnosis.

Additional fibromyalgia symptoms include:
Painful menstrual cramps
Vision problems
Nausea and dizziness
Weight gain
Chronic headaches
Skin problems
Muscle twitches and weakness

These lists include the most common symptoms. For a complete symptoms list, see the Monster List of Fibromyalgia Symptoms.

Fibromyalgia Treatments
While a lot of fibromyalgia treatments are available, you'll likely need to experiment with different options before you find what works best for you.

Fibromyalgia treatments include:
Prescription drugs
Complementary/alternative treatments, including massage and physical therapy, chiropractic, and acupuncture
Vitamins and supplements
Moderate exercise, but only if done correctly

Lifestyle changes, including diet, stress management, and pacing
Every case of fibromyalgia is different, and no treatment works for everyone. You'll probably need to work closely with your doctor to custom tailor a treatment regimen that helps you become more functional. Many people benefit from a multidisciplinary approach, which involves several healthcare providers.

Prognosis for People With Fibromyalgia
Fibromyalgia is a chronic condition. While some people do experience long remissions, no one who's had fibromyalgia can truly say they don't have it any more.

As for the progression of the illness, it's hard to say whether your symptoms will get better or worse with time. Because fibromyalgia isn't degenerative, its course isn't clearly established like it is for many diseases.

Some experts say about a third of us will get worse, a third will improve significantly, and the remaining third will stay about the same. Some studies have linked early diagnosis and treatment to better long-term outcomes, but other than this it's unclear what role treatment plays in the progression, or lack thereof, of fibromyalgia.

Fibromyalgia & Overlapping Conditions
As if all this weren't enough, several other conditions frequently go along with fibromyalgia. Researchers aren't sure whether one condition leads to another or whether they have related underlying causes. Becoming familiar with the symptoms of these disorders can help you determine whether you have more than one.

Overlapping conditions include:
Chronic fatigue syndrome
Irritable bowel syndrome
Temporomandibular joint syndrome (TMJ)
Multiple chemical sensitivity
Myofascial pain syndrome
Restless leg syndrome
Costochondritis (chest pain)

History of Fibromyalgia
Doctors coined the term fibromyalgia (fibro –- meaning fibrous tissue, my -– meaning muscle, and algia -– meaning pain) in 1976, but it wasn’t until 1990 that the American College of Rheumatology developed diagnostic criteria. While muscle pain is the primary symptom, research found that nothing is wrong with the muscles themselves. For a time, researchers thought it could be an autoimmune disease, such as lupus or rheumatoid arthritis. Now it’s widely believed in the medical community that a malfunction of the central nervous system (called central sensitization) causes fibromyalgia, leading to new research into treatments and new hope that fibromyalgia will be not only more treatable, but perhaps even curable.

To date, three drugs -- Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran) are FDA approved for treating fibromyalgia, but other drug trials are in the works.

Good luck to you my dear, hope you find what ales you and find a solution to your health problems.

Please keep us posted and don't forget to ask questions until you find the right answer.


Fantod - August 25

I agree with Axxie - I don't believe that Fibromyalgia is the source of your health issues. I would, however, investigate Myofascial pain or TMJ as a source of your headaches. Take care.



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