My Doctor Can't Seem To Figure It Out

[kbug72]

Hi,

Last mid-September I started having really bad leg pains. It started in my knees (both at the same time) and the next day it moved to my lower back. The next day it was in my neck and shoulders. The pain was so bad that when my husband moved in the bed I would get upset at him for hurting me. After about three days the pain stayed in my thighs with the occasional sharp pain deep in my left thigh. I also had a pulled groin muscle that I don't remember hurting. Before it started I was having general fatigue.

I get a lot of muscle twitching. My eyelids are terrible for this. A few years ago I had an eye twitch for 6 months straight. I also get them in my arms, nose and hands. More of an annoyance than anything.

I have a sharp pain in my lower chest, left of my sternum on my ribs. My doctor seemed convinced that it's my stomach. I'm not. My ribs feel bruised when i touch them. The pain comes and goes and I've had it for at least 10 years. When I was having the bad pain it was constant.

Right now my leg pains have subsided but the chest pain has come back. I read about allodynia. It sounds the same.

I have eczema on both my calves and shins.

My right big to turns bluish sometimes. I get very cold hands and feet as well.

I started getting an itch on my back. Once while I was vacuuming and once while I was in the shower. It was intense like someone put lye on my back.

I get very sore patches of skin sometimes. Usually one patch on one of my arms or legs or on my shoulder. It hurts to touch and to have clothes rub against it.

I get a very sharp pain behind my ears. Sharp enough to make me wince. I also have tinnitus and sometimes it gives me a deaf sensation in one ear and then it rings. It's in the same ear that I get constant infections and also have a perforation in (it squeaks when I blow my nose)

I have a runny nose and post-nasal drip all the time. I'm constantly blowing my nose (that could be attributed to my pets)

I get TMJ symptoms every once in awhile and I am forever clenching my teeth to the point that they are loosening and wearing down. I got a bite guard from the dentist but it's too uncomfortable and I can't wear it in the daytime when I'm really clenching.

I don't sleep very well. (it's 4:45 am as I am typing this).

I had to quit my factory job because I physically couldn't take it anymore. I was having a hard time getting out of bed in the morning because I was stiff and sore.

My doctor put me in the hospital last September under the assumption that I was having stomach problems but I had a battery of tests that came up negative. I had a bone scan, xrays, ultrasounds and a million blood tests. I was tested for rheumatoid arthritis but that was on the borderline and the second test was negative. The only thing that was found was a cyst in my left breast.

The pain in my ribs has always been brushed off by doctors. One doctor told me that I don't have anything in that location that should hurt. I'm fed up and need answers. I keep getting depressed and don't leave the house much anymore.

I'm not in as much pain as last year but I fear that it's coming back because my rib pain isn't going away and I'm getting random pains that come and go. Yesterday it was my ankle. It hurt to walk on it for awhile and then it was fine. My hips do this a lot as well. I get bad pain in them and limp along and then it goes away like it never happened.

I'm sorry this is so long but I'm desperate for some help.

Thanks for reading and I appreciate any responses.

[GregB57]

I can sympathize with you kbug. I too have been through many, many doctor's, with pretty much the same results, nothing!  I have felt like screaming at the top of my lungs for the last 17 years. I get the same skin sensations and pain with it, in spots, parts of my body, or on my left or right side. I can't touch anything, the sheets, silk or otherwise, can't wear clothes. So many symptoms (more than you have listed, ie., thinking, focusing, dyslexia, bladder control), come and go. I have been tested for MS. Negative. One doctor thinks maybe Fibro, but 90% of suffers are women.
Don't give up. I don't think I'm dying. But my family thinks I'm crazy.
Good Luck. I'm praying for you, God Bless.

[selmaS]

Hi...since I am not a dr...it is very diff to speculate, but I would be concerned and want an MRI of the brain done.

Some of ur symptoms lead me to believe it could be one condition, but u have a few symptoms missing and a few that do not fit.....so

I feel u need a really good NL and have a few MRI's to see what is going on.The PND explains the similarities.

Please update on ur progress-I am interested as to what this could be.
Godspeed
"selma"

[kbug72]

Hi. I know I've had numerous blood tests but I'm not sure of everything that was tested.
I haven't had an MRI, I have had a bone scan and a CT scan (abdomen). They came back with nothing. I have abdominal pains, right and left, all the time and no one can find anything.

Thank you so much for your thoughts.

Symptoms (not occurring all at once)so far are:

Nystagmus (not always but sometimes accompanied by vertigo)
Random pain in various places
Muscle twitches
Abdominal pain
Eczema
Sore skin that feels like it's oversensitive or burning (comes and goes in various places, mostly on arms or legs)
Warm or cold sensations in knees and legs
Tinnitus
Tonsiliths and PND
Chronic Sinusitis
Sharp, shooting pains in various places

[selmaS]

Hi...have u had ur labs checked lately?
Vitamin D.....B12 and minerals- calcium...magnessium and potassium.Oh, and have ur thyroid checked...free T3 and freeT4....not just T3/T4.....

Low levels can cause pain, twitching and many of the issues u described....it is not ur answer, but will help with some of it and help u to begin to feel better.

Have u had ne MRI's?

Best wishes on the new dr and I pray u feel better soon.

"selma"

[kbug72]

Thanks for responding.
I'm on my second doctor since all this started. Just this week, after a year of trying, my current doctor has given up. He is of the belief that Fibromyalgia doesn't exist. He has said that I have some form of connective tissue disease but has no clue what. He basically told me that he gives up trying to figure it out. I'm extremely frustrated with the Canadian health care system in general.
I know something is wrong with me but blood tests and ultrasounds and whatever have all come back with nothing other than an elevated amylase level. The doctor said there is something wrong with my pancreas but what, he doesn't know. What are they teaching doctors in med school?!? He told me that maybe the next generation of doctors can figure out what's wrong with me. Two weeks ago, I had what felt like a gallbladder attack. He said it was my pancreas because the ultrasounds didn't show anything. I wanted to smack him. He also told me the specialist (rheumatologist) won't book my appointment because my case is so vague. What the hell is a specialist for then?

As of today, I'm having a constant cold sensation in my left knee, like cold water is flowing on it and a pain in my left abdomen. I feel pretty good otherwise.

I'm on a search now for a new doctor.

Thank you again for responding.

[paige3447]

ive been going to doctors for years,with all of the same symtoms.They told me i have fibromyalgia,30 tears now and getting worse.30 years ago i described it as movable pain,that sometimes would stay lodged in my shoulder blades,but then out of nowhere i couldnt walk on my feet ,then it would go away and my upper body will hurt all over.The past 8 years or so mi hold my left side and massage myselfon left around my ribs,my doctor also told me i have hiatel hernia,but when im in pain there or sternum i find it hard to breathe

[Islands10]

I'm ptetty convinced you have Fibromyalgia...........I share most of your symptoms and have for 30 years now.........have you read about it?

[cathrynliz]

That's sounds awful!  I get strange pains, too, but not as severe or persistent as your's.  Do you know about allodynia?  I just discovered it when searching for answers to my strange pains.  It sounds like something you might want to look into.  I got a lot of information on it from ivilliage.com.

Also, it sounds like it has some symptoms in common with fibromyalgia.  

Wishing you luck,

Cathrynliz

[kbug72]

i guess no one looked at this post but here's an update anyway.
i have been diagnosed with a hiatal hernia, a PFO and a connective tissue disease.

[kbug72]

I wish you could edit these things so I don't have to keep posting and looking like a fool....anyway.

-pain behind my collarbone
-day before I went to the hospital I had pain go up the front of my neck and under my chin.
-pain in knuckles sometimes
-sore scalp sometimes
-doc thought I was hypoglycemic but I thought that was because of the glucose tolerance test.

I hope that's all.

[kbug72]

I forgot some things -

sometimes my eyes seem to vibrate when I'm trying to read close up. I don't read much anymore.
I also had a one time occurrence of visual migraine symptoms without the headache.
I get occasional pain in my lower teeth, below the gums. That pain lasts a few days.

I'm sure I'm forgetting something. The symptoms list is pretty long and it's making me feel like I'm crazy.

thanks.