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Misdiagnosis of fibro?
7 Replies
tcwakley - October 18

Has anyone out there been misdiagnosed with fibromyalgia? My doctor is leaning toward that diagnosis with me but I am convinced I don't have it. The symptoms are the same except for I don't have any of the tender points. In fact, pressure feels better on those tender points that are often used to diagnose fibro. Any thoughts? suggestions or advice?

Thank you!


Fantod - October 19

tcwakley - Have you seen a rheumotologist? This would be the best choice to determine if you have Fibromyalgia (FMS) or something else. Call your local hospital physician referral service and ask them for a recommendation.

It is entirely possible to have FMS and not have all of/or any tender points. My tender points vary on a daily basis. Some days I may have all of them and other days some or none. And, I think most of the people on this board will tell you the same thing.

Take care.


llcsmom - October 19

You may very well have fibro. Of course there are other disorders and chronic illnesses that can have similar or ovelapping symptoms with fibro. I also would recommend a rheumatologist and perhaps a neurologist, if your insurance covers it.

We are currently in the middle of having my daughter re-evaluated by a rheumatologist. She had never been seen by an "adult" rheumy, she saw a pediatric rheumy before she was diagnosed with fibro. She also has an autonomic nervous system disorder that causes many of the same symptoms as fibromyalgia. She was diagnosed with the disorder after being diagnosed 2 1/2 years ago with fibro at the age of 11. She started having many more "neurological" symptoms 6 months ago, and went through a lot of testing which resulted in the dysautonomoia diagnosis. Her specialist feels that she may very will not have fibro, and that all or most of her symptoms are due to the dysautonomia. So, who knows? We are waiting to hear results from the rheumatologist this week. She was tested for a progressive arthritis and for lyme disease--5 different blood tests for lyme, since the usual first test they run for lyme comes back false 50-60% of the time. Her's came back negative twice in the last 3 years, but our dog tested positive for the lyme antibody this summer, so we definitely have ticks that are carrying lyme in our yard. Yuck! Sometimes it takes years to figure things out...


axxie - October 19

It can be very well true, that you may not have fibro, you may just have neurophatic pain, very similar in pain, just a little different.

Neuropathic pain is a complex, chronic pain that comes from an injury or disease that affects the nervous system (nerves, the spinal cord and brain, such as fibro). It’s caused by misfiring nerve fibres that cause pain, sometimes swelling and aching.

A burning sensation, combined with shooting pain, is the most common way neuropathic pain is described, a bad flare.
However, the type of pain experienced can be very different from person to person. Here are some other pain descriptions and symptoms: tingling; numbness; pins and needs; sensitivity to touch or cold; a crushing sensation; deep, aching pain; swelling; temperature charges; shock-like sensations.

With neuropathic pain, the mechanics that normally tell you to jerk your hand away from a hot stove may not work.
Why? Nerves normally carry messages from parts of your body to your brain through your spinal cord. Your brain responds by sending a message back down your spinal cord, telling your body how to react. If a nerve fibre is damaged, it may not effectively communicate how something feels throughout your body.

There are two main types of neuropathic pain.
Peripheral neuropathic pain is caused by injury or a condition that has damaged the nerve fibres – such as diabetes, fibromyalgia, shingles, chicken pox, HIV infection or AIDs – or occurs after an accident, surgery or amputation, injury or disease to the central nervous system, such as stroke, spinal cord injury, MS, FMS, or cancer of the brain or spinal cord.

Diagnosing neuropathic pain can sometimes be a tricky task.
There is no one medical test that detects pain, so a doctor must rely on information from you, and a physical exam. Your doctor will use a wide range of diagnostic tools to determine whether your symptoms fit the specific diagnostic criteria.

Unfortunately, treatment options do nothing to reverse the condition, but they may help improve your quality of life.
There are a number of medications, from topical ointments that contain hot peppers to help kill off bad nerve fibre, to pills, such as antidepressants or opioids. Many patients don’t respond to these treatments. In fact, a 30 per cent reduction in pain is usually considered to be a success. And, in most cases, the pain may even get worse over time.

Another option to help manage pain is exercise. Swimming is especially good because being in water reduces pressure on your body.

Alternative or complementary medicine such as acupuncture, physical therapy and electrical nerve stimulation may also help manage pain.

Sleep Away the Pain
If you have nerve-related pain, such as FMS or chronic fatigue, you may be experiencing poor sleep as well as depression.
Sleep problems have been reported by 88 per cent of people with neuropathic pain, such as FMS. More than half (55 per cent) of people who have neuropathic pain said they have experienced anxiety or depression. The catch is that if you are tired, depressed or anxious, your body is likely to be more sensitive to pain.
What can you do? Try meditation, relaxation therapy or counseling.
You can also talk to your doctor about prescription medications to help you sleep better and ease depression and anxiety. That said, exercise has been shown to be effective in lifting depression and improving sleep.


JonathanSteeleRN - October 22

There are some new experimental neuropathic pain drugs being tested. Interestingly, one of the studies looked at using NAC along with the trial.

So doing some research on NAC it turns out that there is a lot of info that indicates it may help with this pain.

Just do a search on glutathione neuropathic pain.

This may not be a solution but it may help.

One of the most important things you can do is avoid the foods that have neuro-excytotoxins. Things like MSG and growth hormones in regular milk.

Also eat the foods that will boost your glutathione. Glutathione (you cannot take it as it is poorly absorbed) does numerous things, including protecting nerves.

Just do a search on...
"learn how to boost glutathione" and you will find a number of sites that will tell you the foods to eat.

There are supplements you can take too. Only a few are medically approved. If you do, make sure and confirm this with both your doctor and your pharmacist.


tcwakley - October 24

I have seen a rheumotologist and she said that she thought it was fibro but only because she couldn't think of what else it might be. Thank you all for your comments! :)


lorieholtz - October 25

yes i can say the same until up till a couple months ago. i would go long periods of no signs of fibro other than my usual neck and shoulder pain due to another issue. but than it would flair up for awhile and go away again. only this time its seems to be here and going nowhere


axxie - October 25

Chronic Myofascial Pain sometimes diagnose with Fibro. Or fibro is diagnose and then you see the same patien having MPS.



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