I’m fed up. I have a urologist, neurologist, gastroenterologist, internist, orthopedist, rheumatologist, gynecologist and an acupuncturist… and I’m only 25 years old. My doctors are all dumbfounded but are having fun trying to diagnose me. I’m fed up though and tired of being in pain. Please help.
My blood and urine tests come up fine, aside from a high calcium level, but only at 13.2. My CRF is low… so it’s apparently not an inflammation problem. My Xrays are fine, aside from “insignificant” scoliosis (3 curves). My MRI results show an “insignificant” hernia in my neck and “insignificant nerve degeneration” in my L1 and L2 discs.
My doctors suspect endometriosis, spastic colon (IBS), interstitial cystitis, and a non-inflammatory rheumatological disorder.
I have pain… and lots of it. I have pain in my female organs, my intestines, my bladder, my rectum, my joints, my head and my skin. It varies from dull and constant aching to sharp shooting pain.
Bladder- It hurts and feels very uncomfortable. It makes me have to urinate frequently. Just yesterday I peed over 20 times… 2-3 times per hour, sometimes more…. and I only drank one glass of water. I generally drink a lot of water, but on days like this, I try not to because it just makes it worse or so it seems. This pain and frequent urination comes and goes randomly. It’s made worse by tea and coffee. No cystoscopy yet because I was told that even if it was IC, there’s nothing much to do about it.
Joints- They hurt and are stiff almost every morning, but that also comes and goes randomly. When this happens I usually can’t do much of anything for at least 2 hours… usually more. This affects every single one of my joints. Can’t grip things too well and it feels like my hands are swollen, though they aren’t. In addition to that, I’m freakishly flexible (I can push my thumb forward and touch my arm easily)… so much so that my shoulder and hips pop out of socket frequently (or feel that way) and OUCH, that hurts! Aside from the morning problems I have the most joint pain in my shoulders, hips and knees. In the last 2 years this has been worse, but I can remember these types of problems since I was young. Doctors said I had “growing pains” but those pains are still here… grrr.
Muscles- Strong stabbing pain and shooting pain. Happens in random muscles at random times.
Head- Headaches in certain small points on my head: my temples, top left and right corners of the back of my head and bottom left and right corners of the back of my head. This usually happens in ONE of these points at a time, never on both sides.
Jaw- Ouch. I wake up and my jaw hurts like hell. My dentist says I’ve been grinding my teeth. On top of that my jaw gets random shooting and aching pains from time to time that don’t seem to be related with grinding my teeth.
Face- I’ve had several staph infections on my face: eyebrows, chin and jaw line.
Ears- Ouch. Lots of random inner ear pain that comes and goes randomly, sometimes radiates down through the side of my neck. Sometimes I have ringing in my ears. Also, ears are super sensitive to wind and cold (even barely cool weather).
Neck- neck pain and soreness at the back of my neck. Frequent “cricks in the neck” since childhood”. Sometimes when I make a particular slight movement with my neck to look up and I lean my head back a bit, I get TERRIBLE pain coming from the top of my neck/base of my skull that radiates upward around the base of my skull. When this happens everything goes BLACK for a second. The pain from this is so strong it can hurt for a good 30 minutes. After happening it can happen again very easily. Also, strong pinching pain in 2 locations on the front of my neck, on either side of my throat (on the outside of my neck, not deep inside). I also get this pinching sensation in my thighs in 2 specific locations.
Back- lower back pain, pain between my shoulder blades. I hate massages though because it hurts when people poke me with their fingers. If I do get a massage it has to be with one’s flattened palm.
GI- abdominal and pelvic pain (cramping, stabbing, radiating, throbbing, electrical, shooting, dull and aching pain), lots of gas, shooting rectal pain, constipation, diarrhea, mucus in stool, daily morning cramps with TERRIBLE pain (like severe menstrual cramps) that has me curled up in a ball squirming around (relieved after going to the bathroom).
…That’s not all… see comments
Random weird stuff- burning rectangular patches of skin (no rash, just burning sensation) that lass from 2 hours to several days. It hurts more when I touch it, when my clothes rub up against it or when a veryyyyyy slight breeze blows over it. It BURNS like a real burn. It happens randomly with no pattern. It can show up on my arms, thights, butt, hips, abdomen, love handles and back. In addition, I randomly get tingling sensations in my fingers, hands, feet and toes. This comes and goes randomly.
Sleep- When I wake up from a nap I feel like I’ve been beat up with a baseball bat. My entire body hurts. Sometimes this happens when I wake up from a full night’s sleep. On top of that I feel TERRIBLE because my heart is fluttering. Family and friends have put their head on my chest and felt it themselves. In fact, it was a friend who noticed it first, not me.
Other- I get sick easily and I usually get fevers when I’m sick. Those fevers are TERRIBLE because my entire body burns like I’m
…on fire.
Oh, and I also black out during roller coasters. I didn’t used to, but in the past few years half way through every ride I black out for a minute or so and just dangle there with my head flopping to the side (or so my friends say).
Please help. I’m tired of spending thousands of dollars on doctors who can’t help me. I’ve seen just about every specialist I can think of and that I’ve been referred to. This Thursday I have a sleep study with a neurologist… we’ll see how that goes. My rheumatologist suggested it. I just want to be well again. I’m tired of being sick, in pain and feeling like I’m 80 years old. I’m only 25 years old!