Hi, 11 years ago I was diagnosed with fibromyalgia, but my symptoms keep evolving and keep coming! I just found in my records that my neurologist wants to rule out MS vs Lupus vs just problems caused by fibromyalgia.
I have a + ANA, speckled, High sediment rate high C-reactive protein.
I go see my neurologist for follow up next month so I’m making a list of points to keep in mind when investigating. This is my list.
* Had food in my mouth but couldn’t make myself swallow. Needed water in my mouth to make it happen. Occurred multiple times on same night. Had happened about 4 or 5 other times very stretched out that I can remember.
* Numbness/tingling in right foot has increased in intensity, and now encompasses the tops and tips of all toes.
* Numbness in left foot is starting to mirror the right foot but not as severe.
* Joined fitness club at Weymouth club, and every time I start to try to exercise on the treadmill my feet go completely numb. Bilaterally
* Every time my feet/fingers are cold they hurt really bad and become numb. My toes feel like painful hard sausages. My fingers are cold white and painful. No amount of socks seem to help.
* still get numbness in left arm- pins and needless. Pinky and ring finger mainly affected out of fingers, but all do go numb occasionally just not at the same time.
* Knees, ankles, hips and back hurt so bad when I’ve been walking for a while, like a short trip to the mall for instance. The bottom of my feet feel like they are being hammered with nails like Jesus on the cross. It has me gasp and fall over. Many of my friends and family have seen this happen to me. My knees hurt so bad I decrease range of motion and limp around. Typically it will be both knee and ankle on the same side that flare at a time.
* Had carpal tunnel release surgery after median nerve injury from steroid injection attempt in pain clinic.
* Constantly cursing in my head bc of pain. Every thing hurts all day.
* Random mouth sores not related to the grinding of my TMJ. I’ve had 5 separate sores that lasted a week since Christmas.
* Decreased sexual function- dryness and odd difficulty to orgasm- sometimes completely incapable
* See black spots randomly or other times I see stars randomly.
* Got Botox for migraines on Mar 16th as the nerve blocks were becoming less affective. Migraine pain always on left side behind eye and in ear.
* So tired!! I’m used to being tired/fatigued. I had a sleep study done in 2007 that diagnosed me with borderline narcolepsy, but lately it’s been crazy! Every afternoon I want/need a nap. I’ll be holding my son and bouncing him while trying to entertain my daughter and literally fall asleep standing with my son in my arms.
* Back pain- all of it!
* Feet hurt in the am- feel and look like an old woman getting out of bed. If I don’t stretch enough I fall back into bed. Have to take it slowly. Feet and lower legs very stiff.
* Heartburn often
* Dry mouth, and skin
* Muscle spasms? A random muscle will twitch and twitch and last for 1-3 minutes. Muscles such as: eyelids, thumb, inner thigh, upper lip, leg
* Husband says I have restless leg syndrome, constantly moving my legs in my sleep
* Bruising!! Every day a new bruise and I have no idea why! ALL over my body, even my breast twice!
* Difficultly remembering stuff- especially words, and dyslexia symptoms increasing
* Car sickness/nausea and lightheaded
* Continued vertigo
* Random right flank pain- like stabbing
* Lots of pain at waist and shoulders and mid back and neck from chest
* Continued cycling between being ok to being severely depressed with thoughts of suicide- working well with my psychiatrist
* Face is always itchy?
* Odd ?migraine? Where I was talking to my husband, got really extremely happy for no reason, then suddenly I was repeating my words mid-word or even saying a sentence and stopping half way through and repeating the same sentence again, and inability to get the words I wanted to say out of my mouth, and I was talking really slow. Continued that night and repeated the next day. Has only happened 2 times since.
* Rashes that dermatologists couldn’t figure out why or what they were. Started at 16 years old and repeat randomly, especially during times of high stress. They were round, dry, red scaly. All over my trunk and chest. Most recent as of prior to birth of Keith.
* Hives, hives, hives! All the time. For unknown reasons. Most recently my hives were different. They come and last for a week spreading and forming one huge super hive all over me. When they disappeared they left bruises. They were painful not itchy. Went to VA Er for them.
* I’m also getting pressure hives. Appear at end of day when I get my pjs on and itch a bunch all night but are gone no sign left by morning.
* Got really bad diarrhea in 2015 and lost 25 lbs in 3 months- many tests done and all we could come up with was ibs. I still get bouts of bad diarrhea. Very painful. When I’m not having a bout of diarrhea, I’m super constipated, and need to take Colace.
* Severe preeclampsia two times
* Lymph node on right side back of neck hard and swollen for at least 12 years now
There’s way more missing from the list, but I just wonder, could I actually have Lupus? How would we figure it out?