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New member
Sep 11, 2014
North Carolina
My only medical diagnoses are "Pure O" OCD and Bipolar type 2 with associated depression -I've been depressed off and on since I was 13. I'm on lamictal and lexapro.

I'm 27. I noticed my first weird symptom about 4 years ago. Floaters in my eyes and weird numbness and tingling in my extremities. Since I was much younger though, I would have random pain in my arms and legs and recall asking myself if it was strange or if everyone else had these too. A survey of my family left me with no consensus. I've had chronic tension-type headaches since I was about 16. They last from 2-14 hours and I get 2-4 a week on average - always associated with pain in my neck and shoulders.

About 6 months ago I realized I had increased vision issues, numbness and tingling, clumsiness, stiffness, and a hard time focusing. With an aunt and uncle diagnosed with MS, I went to a neuro a couple months later who said there was no obvious issue and to come back this December. My symptoms only sort of aligned with MS, so the visit put me at ease.

I'm four months out from that visit and a couple other symptoms have caught my attention: sensitivity in certain areas of my body, a feeling of joint pain in my hips and knees that is worse in the morning but can sometimes last all day, and worsening headaches that keep me from my normal life.

I was speaking with an older women who was screened for several diseases recently including fibro. She heard my symptoms and said it sounded similar. So I made the decision (mistake maybe?) of looking it up online.

It's like it all started to fall into place:

- Pain and tenderness at the "tender points" - I wince in pain when my toddler son pushes on those parts of my knee, elbow or hip.
- Muscle stiffness and tightness associated with headaches and altered gait (when it's in my hips/legs).
- I used to be a night owl and could go on 6-7 hours of sleep a night, but for the past year or so I've been sleeping about 10 hours on average. I do not wake up rested, and getting out of bed is very hard. Naps usually leave me feeling worse, no matter how long or short. I'm often very foggy in the morning and sometimes even feel drunk.
- Light sensitivity, heat sensitivity. I've always lived in the Southeastern US and was fine with heat - this year it's been very hard to cope with. I feel like I just need to fall onto the ground.
- My short term memory is shot. I will forget what the topic of conversation is while I'm talking about it. I've had friends report that I've responded inappropriately to things - I know I have! I forget what we are talking about and I'm trying to cover for myself. My concentration is horrible and I've been leaving work out of guilt that I can't accomplish anything.
- I clench my jaw throughout the day and night
- Restless leg syndrome has been with me for at least 2 decades now

Here's why I feel like I must be crazy though: I don't have "widespread pain," at least not as I understand it. Today, my hips and knees hurt, like the joints are aching. It makes me walk a bit funny but I can walk. My left shoulder has the same feeling, and I have a deep bone pain in the upper part my left arm. Some days I have shooting pains in my arms and legs. I'm generally very sensitive to touch though, but it doesn't "hurt" the way I define "hurt," it does feel uncomfortable and I pull away.

Any point in asking my neuro about fibro next time I go? I know you all know the feeling - I feel like it's all in my head and I'm just exaggerating things. But as I sit here and type this my hips feel like they're burning - but they often feel that way so I ignore it.

I would definitely ask about it. I kept a log of issues and at my nuero and rheumatologist appts I broke out the list. It was vert helpful. I have gotten to the point that I write everything down day to day or I will forget. Best of luck to you!
Thanks, I need to seek out a rheumatologist I guess, and I'll definitely log my symptoms.
Did you get a MRI done? I ask because I had similar symptoms and I was indeed diagnosed with something by my neuro (don't feel like talking about it here). I really think you should get a brain MRI done if you haven't done it yet, maybe also one of your spine... that tingling sounds kinda odd. You should definitely insist your doctor, maybe go to a rheumatologist as well and get the trigger point test done!
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