doctors think I am nuts

[topherlee]

I am a 38 year old male.  For maybe 5 years now or more I have had these horrible and strange pains or aches and when I try to tell doctors about it they just look at me with some kind of confused face.  One even asked if I was depressed.  I said only sometimes and only because I hurt this way.  The strange thing is my symptoms can change drastically.  I am usually sore under my arm pits, under my arms (like I have been lifting weights but I haven't), the tops of my thighs ache like I have been climbing a mountain.  Also The inside or underside of my knees are sore and hurt to the touch, as well as the inside of my elbows (the best way I can describe it.)  And the back of my neck and shoulders are often tense.
The easiest jobs can leave me sore all over for several days.  I work 3rd shift and it is sometimes really hard to sleep (hurts to lie down sometimes)  It seems like if I have gone without enough sleep these symptoms just intensify.  It really takes days or even weeks for the pains to lessen-- and they just start right up again.  Sometimes I feel as if my whole body has locked up.
The doctors may think I am nuts but I know I am not.  I have been reading a lot of articles about fibromyalgia and I realize that it affects mostly women, but I am wondering if this could be a possible reason for all that is going on with me.  Otherwise, I am healthy.
From hearing my brief story, what do y'all think?  Is this similar to what y'all are experiencing?  Thx.

[patsy10]

You could have fibromyalgia but keep in mind, fibromyalgia is not a disease.  It's a group of symptoms(syndrome) without a known cause.  So even if you get this diagnosis all it is a name for a group of symptoms.  Also, many people get this diagnosis because no obvious cause for their symptoms is found.  There is criteria in making this diagnosis but people often get labeled with this condition without proper testing. One of the criteria is that you have to have 11 out of the 18 tenderpoints.  I was told by more than one doctor I had this. None of them even checked for the tender points.  One actual disease which is often mistaken for fibro is lyme disease.  I had the bullseye rash and I have improved since taking antibiotics.  Not saying you have this but this was my experience.

[kitty51]

At least 1 male to 6 females has fibro they say its caused by stress but not everyone has fibro so i dont go for that one,As patsy10 says its not a diease,its a condition and it wont kill you.Fibro can mimmick lyme disease,lupus and cfs thats why you need to get those tender points checked out.

[tonyad]

If you want my HONEST opinion.....Find another doctor! And do not stop until you find one that listens to you. If you have doctors that are not listening to you and just want to pass all of your sx off as A) depression, B) hypochondriac or whetever else goes through their minds, then you do not need to be giving them your money.

You know your body better than anyone. You know what is normal for you and for what is not normal for you. Remember, the doctors work FOR YOU!  So many people can feel intimidated by the medical profession because.....after all. they do have that fancy degree hanging on their wall. Well, when they become a doctor they also take an oath (Hippocratic Oath)  Written in antiquity, its principles are held sacred by doctors to this day: treat the sick to the best of one's ability, preserve patient privacy, teach the secrets of medicine to the next generation, and so on.

They need to be upheld to this and remember it!  OK, Sorry I will get off the soap box now. Please forgive me if I have offended anyone in any way.

I hope that you can find some answers and find them soon.
Have a great week :)

~Tonya

[MsDownshift]

I totally agree with Tonyad, you should find a doctor who will listen.  In my experience I have seen several doctors who either don't believe in the condition or believe that the "cure" is exercise.  More research needs to be done.  There are several diseases that produce the same symptoms so all other conditions need to be ruled out first.  In reality fibro is a "throw away" diagnosis.  When all else fails the diagnosis will be Fibro.

[PlateletGal]

I only pay attention to the physicians who will listen. And to be honest with you, I don't believe we have a "syndrome".... I think we have a disease. There is extensive research on CFS and some on fibromyalgia. I believe that pathogens are the cause. I hope you guys watched that video of that link I posted yesterday.

The doctors I pay attention to are especially the ones who have had illnesses themselves:

Dr. Garth Nicholson (CFS) - The Institute for Molecular Medicine
Dr. Mark Shaw (CFS/fibro) - author "Beat Fibromyalgia and Chronic Fatigue Syndrome"
Dr. Trevor Marshall (sarcoidosis) -- Marshall Protocol
Dr. David Jernigan (lyme) --- successfully treating lyme disease, CFS, autoimmune and other illnesses without antibiotics ! I'm on his protocol.

[PlateletGal]

btw... all of these physicians successfully treated their own condition(s) by killing pathogens.

[patsy10]

I agree with you.  I firmly believe we all have a disease.  This is why I will not accept a fibro/cfs diagnosis. Like MsDownshift stated, these are "throw away" diagnoses.  I think once a person gets labeled with these then physicians stop looking for an answer.  There is a cause.  I believe it can be found if a doctor/s are willing to look for it.

[droopy56]

     Your symptoms sound very similar to mine, especially the upper thigh and shoulder pain. The first thing you should do is tell your present doctor goodbye, and find one who will listen. It was a neuro who finally diagnosed my fibro (yes, I am one of the small percentage of men who have this condition) after some lengthy tests. He then directed me to a rheumatologist, who are trained to treat fibro. I've been seeing my fibro dr for about a year now, and so far, I'm happy with the way she's treating me. The only drawback is that I have to drive 30 mile one-way to her office and long drive tend to get painful. I'm trying to manage my condition with the least amount of drugs possible. So far I take .5 mg Clonazepam to sleep at night and Ibuprofen to help get rid of the tension headaches caused by the stiffness in my neck and shoulders. I'm trying to get my dr to give me a scrip for a TENS machine, but she's still dragging her feet on that one.

     Anyway, either get rid of your dr or have him refer you to a neurologist or rheumatologist, hopefully one who will listen better than the one you have. Five years is much too long to passively sit and take what you're going through.

[PlateletGal]

I agree with you 100%. And to be honest with you, I think our government has a very good idea at what is causing some of these syndromes. We could start with Gulf War Syndrome. Originally our government claimed that it didn't exist, but yet they knew how to treat patients' who had this "syndrome". They had an antibiotic protocol in place.

Also... Guillain Barre Syndrome. Everyone who works in the medical field knows that the flu or even a flut shot can cause GBS and yet it is still classified as a "syndrome", although it is an autoimmune disease. I hope that GBS patients don't have to go through what CFS patients do when they file for disability. Insurance companies are saying to CFS patients, "well there is no cause for your illness and it could be stress, so we are only going to pay for you for 2 years".

[ott70]

I finally got a doctor to listen to me. Really listen to me. It was by accident too because she was filling in for my regular PCP. In what I thought would be a quick 10 minute appointment of "I still don't know what you have", it actually ended up lasting an hour. Young doctor too, so she seemed more open to CFS and EBV and CMV related problems. And better yet, she had a patient down in Arizona that she said had almost the exact same symptoms and results. We're doing some more bloodwork, but it's finally nice to find a doctor who finally agrees that you are going through some **** and it's not all in your head. Maybe I'll be switching my PCP.

[PlateletGal]

Hey ott ! It's good to see you posting in here. We should drag Padro over as well.  ; ^ )

I'm happy to hear that you found a good physician who is willing to work with you.

[ott70]

Hey PlateletGal! Yep, finally got one to really listen to me. I have seen some good doctors this last few months, but none of them really listened and agreed that something was going on and that it needed to be checked out further. Boy, what an ordeal!