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doctors don't seem to think.....
5 Replies
JCatt99 - October 27

Hello, I'm new to the site. I'm 40 year old male and have been experiencing weird symptoms since I was 18. Because they were so widespread, they always just checked out the symptom itself, at different times. Been checked out for ms, lymes, rheumatoid, etc., and no diagnosis. I really feel I have fibro, it makes too much sense. My neurologist doesn't think I have enough "pain." These are my widespread symptoms: never get a good nite sleep, always exhausted in the morn, morning stiffness, dull achiness all over, joints hurt from feet to shoulders, hands and feet too, extreme neck pain and stiffness, jaw achiness and stiffness too, ringing in ears randomly, retinal migraines, limited vision with aura lasting 45 minutes, anxiety with some panic, difficulty walking at times especially in really cold, spinning feeling in head, difficulty with urination, general fatigue, slurred speech at times, forgetfulness, foggy feeling, lower back pain, shallow breathing especially when i sleep. I know these are alot of symptoms, but I've had them all at some time or another and they all kind of come and go. Here's the funny part, I lead a totally normal life pretty much. No meds. I cut hair all day, go to the gym, play golf, travel, etc. The symptoms are definitely there but are not severe enough to keep my down. I also and concerned with possibly having myofascial pain syndrome, or disautonomia. Doctors seem to brush these off cause I look so healthy. You guys seem so knowledgeable, any opinions on my situation? Sorry so long, lol, thankyou, Joe C.

 

Fantod - October 27

Hi Joe - You need to see a rheumotologist to get a firm diagnosis of Fibromyalgia (FMS). Your symptoms do seem to indicate that might be the problem. If you have any recent tests or bloodwork round up copies so you can save some time and expense. FMS is rare in men - about 20% as opposed to women.

The reason you are so exhausted and achey in the morning is lack of resorative sleep. FMS disrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No restorative sleep means higher levels of pain during the day. This rapidly becomes a vicious circle.

It sounds like you might need to have a sleep study done as you say you are a shallow breather when sleeping. As a rule, FMS patients are shallow breathers. And many FMS patients have sleep apnea or other problems.

Looking healthy has nothing to do with FMS. I look perfectly normal and am a walking mess. Your doctors all need to be given an earful for not listening to you and taking your complaints seriously. Exactly how much pain do you have to have before they are going to do something about it? There are still plenty of healthcare professionals who think FMS is a figment of our collective imaginations. It is recognised by the National Arthitis Foundation and the Center for Disease Control.

Find a rheumotologist by calling your local hospital physician referral service and ask them for a recommendation to a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. Or, you can go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly healthcare providers in your area.

You might also consider being tested for gluten sensitivity. It is possible to be sensitive to gluten but not have full blown celiac disease. Gluten can cause some of the problems you have listed. The most accurate test is done using a stool sample. Bloodwork is not always accurate.

And, you should be evaluated for TMJ (now called TMD) by a dentist that specializes in it. Are you aware of grinding, or clenching your teeth at night? That would be a good explantion for neck pain, headaches, the spinning sensation and jaw achiness. I wear a splint at night to keep my facial muscles relaxed and keep me from grinding my teeth down to nubs.

Good luck to you. It can be a long process to get a diagnosis of FMS. Take some time to read through all of the information in the blue boxes on the lefthand side of this page. The better educated you are on the subject the sooner you will recognize whether the healthcare professional that you are working with is handling your situation correctly. Take care and let us know how you are doing.

 

JCatt99 - October 27

Thankyou Fantod, I have had 2 sleep studies done, with slight sleep apnea, not enough to warrant getting the machine, they said. I did have trouble getting into that deep sleep stage. Interestingly, my oxygen level in the first study dropped to 89 percent which isnt good at all. The second one wasnt quite as bad, low nineties. I dont think I grind my teeth, my dentist doesnt seem to think so. But my jaw joint is painful right in front of the ear. I'll check out the gluten point you made, never thought about that. I'll keep reading and learning about this, thanks for your help, Joe C.

 

solanadelfina - October 27

I had the same problem that this specialist or that specialist would look at this symptom, say there was nothing wrong in their department, and send me packing. My new primary doctor for this is an internist, who has experience with fibro patients and is willing to look at the whole picture.

It's great to hear that you can function without meds, and don't give up when dealing with doctors. We have to fight for ourselves, and everybody is different in their symptoms and severity.

Another thing to try could be cutting down on your sugar intake. It's made a big difference in clearing my head and the fatigue.

Feel free to bring all the questions you have!

 

JCatt99 - October 27

Thankyou, I love desserts and sweets, however, I try not to load up on them. My diet is pretty good, I try to eat healthy smaller portions. Sugar definitely does not make me feel good, I know that for sure. I will try to cut back even more and see if it helps, thanks for your help, Joe C.

 

axxie - October 28

Hi, wondering if you have chronic pain syndrome, this wold also indicate problems with stiffness, as for jaw achiness, I was treated by tmd specialist and it has resolved my problems with the pain.
or you may have
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.

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.
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.

If you do have FMS, no one has FM symptoms the same way as another, some of us suffer more of one thing, then another, but we all share the same symptoms.

As far as looking good or in good shape, has nothing to do with FMS. Go seek a neurologist, an internist, pain specialist doctor or a rheumy, anyone of these can accurately diagnose FMS.

Having fibromyalgia and or depression and treating it, is different, for different people.
, same goes with depression.

We all manage fibro differently, we all look different also, not all of us, have the same level of pain.

 

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