cycling pain

[shorrocks]

Hi, for a few months I have had severe pain that is in my chest, back and raidiates to hands and feet, neck and head.  I have hand swelling, fluid retention.  The pain starts slowly and worsens over a day or two, is around for a few days then magically disappears.  I have gained alot of weight with this.  I have fluid in my lungs after laying down for awhile, however it clears within minutes of being upright.  I have had many, many blood tests, some x-rays, seen a rheumatologist, cardiologist and family physician, podiatrist, been in the er because of tachnychardia.  All tests are apparently ok.  While the tachy was definite in the er and on a halter moniter, it too is fleeting.  I have been put on anti-anflamatories, with no alleviation.  I also was put on an acid reflux med that hasnt put a stop to this.  I have been given muscle relaxers again no alleviation.  Today I was prescribed a pain medication, again no alleviation.  The only alleviation seems to be time.  I am tired of being in massive pain weekly.  I am tired of having so many tests and seeing so many doctors and not being helped.  My symptoms are so multiple and everchanging that it makes me nuts, let alone trying to go through the variaty with the doctors.  I cant seem to link this to any food, or other condition other than it started after I was hit by some type of virus in april.  The symptoms have been bizarre and numerous and as Ive mentioned fleeting.  I cant find anything in relation to edema in the lungs only after laying down that disappears after being upright for minutes.  My blood glucose actually goes down after eating but is high in the morning upon waking.  When these boughts of pain happen I end up with a low grade fever too.  Nothing helps to stop the pain.  Even when I have suspected we found something to help it just happened to be "the cycle" ending only to return within a week, usually less.  My heart symptoms have gotten alot better, but still occur.  Palpitations and the tachy.  No rhyme no rhythm.  To any of this.  Severe muscle weakness too.  My jaw gets tired just eating, my hands get tired just flossing.  I just dont know what to do other than go to an ER at the height of one of these boughts and refuse to leave until they find out what the hell is wrong with me.  Is there any doctor who can actually take all of the symptoms into account and actually help me??  What type of doctor would that be?  How do you get helped when by the time your x-ray is the fluid is definitely not there because you havent been laying down for a good amount of time??  How do you get helped when by the time you have your appointment symptoms have disappeared.  How do you get helped when all of the tests comeback ok and not what they call urgent.  Meanwhile I am in unbelieveable discomfort at least 4 out of 7 days of the week??  Im sure you can see my desperation at this point.  I should mention that my 7 year old son was sick at the same time I was initially and he too is still experience issues, fleeting and unusual.  right now, emotional, chest pain, rash.  Its so hard trying to figure me out and on top of that he is still suffering from something too.  What in gods name could be happening to us.  My husband is fine, and my older son is also fine.  I suppose any info would, or could be helpful.

[Cindee56]

Hi, I have similar symptoms, pain that comes in cycles, pain in hands and swelling of hands and fingers.  Pain in my biceps and triceps.  I was diagnosed with fibromyalgia.  Did the rheumatologist consider this?

[Toomanyadvil]

Hi Shorrocks,

Welcome to the community. I'm so sorry you have been having such a hard time getting the answeres you need for all your symptoms.
They do seem to be all over the place.
I am not a DR, but the symptoms that are in your head, neck, back and chest that radiates to your hands and feet do sound as if they would be connected.
Have you seen a Nuerologist?
You need a DR to look at all these symptoms as a whole and start ruling possibilities out.  You've aleady had x-rays and blood tests but have you had any MRI's or CAT scans? Those tests are sensative enough to pick up any possible problems with your back, neck or head.
You alsomentioned a Rhumatologist. Did they test you for Lymes Disease and all other auto-immune conditions that can present with pain throughout the body?

There is a conditon called Chonic Pain Syndrom. Although they dont know the cause it  is thought by some DR's to be caused from an accute illness or accident. They say that after the acute problem heals the pain continues to persist for at least 3-6 months.
They think this because while your sick or injured the pain receptore throughout the body are activated which sends an electical message to your spine and then to your brain. When the illness heals for some reason these pain reseptors are still being activiated.

But as I said, I'm not a DR by any means.
My advice would be to make an app with a nuerologist and see what ideas and tests they can do.
Your not alone with this. So many others have such a hard time finding the anweres they need.  I understand why you are so frustrated and desperate for both you and your son(could he have been bitten by a tick?). Pain can be a devestating thing to deal with and it takes alot out of us physically and mentally.

Please let us know how things are going for you. You will be in my thoughts as you try to find a DR to help with your Pain and bring an end to it.

TMA