Hello all, I'm new to the forum and need some opinions of other PN'ers...

I am on the hunt down for a name to my situation..I've been trying for years but really concertedly for the past two years. Here is a quicky recap and I'll include all the things I've compiled and recalled even though they may not apply to PN just so you get the whole picture:

**trying to be brief, I swear**

Today picture
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- Regular episodes (almost daily) of burning scorching feet (especially felt on soles)/cold feet (whole foot, goes a little up the leg). They don't particularly come on one after another but it does happen sometimes. I've looked up Raynaud's via google and the images look way severe--My feet neither get that red nor that white.
- Resist wearing anything but flip flops or sandals as my feet tend to swell and feel claustrophobic
- Almost 24/7 leg pain that is typically hard to describe, usually anywhere from the knee down including the foot in a radiating fashion but sometimes in the thighs too
- Sometimes the pain will be in my hands (like I was wringing them for hours)
- Feet and hand muscles sometimes get so sore like I walked alot or something
- Leg pain is 95% of the time bilateral (same with hot/cold feet)
- Was treated (erroneously it turns out) for RLS by a neuro for 2 years
- Low back MRI showed bulging disc with no impingement on cord
- EMG/NCS 'normal'
- All bloodwork considered normal
- High triglycerides
- Night sweats
- Fatigue
- Diagnosed with Delayed Sleep Phase Syndrome (which definitely contributes to the fatigue I'm sure, but I've been a night owl my whole life and up until about a year ago I could still gear up to go to work on a Friday morning all dolled up for Friday night cocktails and good times...not true anymore)
- Tried many SSRI/SSNI's but they didn't seem to affect the pain although the attempts were before the pain was almost constant

History
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- Childhood 'growing pains' (would ask step-dad to 'rub the pain out') a few times a month starting as early as 12 but a copy of my medical file reveals I mentioned my ankles hurting at age 5
- Hot feet in teens..not frequently but I remember turning around in bed so that I could put my feet against the cold wall for relief
- Had ITP at 5, it just went away on its own
- Allergies/asthma <--- both much worse when I was younger
- Family history of: PKD, pernicious anemia, arthritis, high blood pressure


So, over 2 months ago I took leave from work, where I've been for 12 years, because I just couldn't do it. Either too tired or too in pain or both. Concentration shot. So irritable! Couldn't get to work on time, couldn't deal with being there 8 hours, no life outside of work...

Work has been very obstinant about short term disability...after all the ppwk in from 2 Dr's they still didn't approve until 2 and 1/2 months later [Apprved to end of March last week. Told me it was 'good faith' as there didn't appear to be anything in file to support why whatever I was being treated for for past two years had progressed to being 'disabled'.] Egad...I want to work, I *like* my job. Bunch 'o jerks!

I'm seeing a rhuematologist on Monday because I want to rule out lupus, CFS, Fibro, etc...or rule them in. I'd prefer to have nothing wrong with me of course but at this point, I just want something, a label, a name...other than just plain old I'm tired and in pain. But, I also know that PN can go with Fibro, Lupus, so who knows.

My neuro kept horrendous charts/notes. She indicated that she did the safety pin test on the first visit...not true, only the last one last month at the end of the appt where I couldn't answer her question on if it felt the same as she moved up my foot/leg because I said, 'I feel it but is it supposed to feel different? It is less sharp toward the feet'. Basically she said, 'Well, the NCS was normal'.

Seriously, if I can find out about temp and sensation diffs and small fiber neuropathy in 10 minutes on the internet..why is she not all helping me in the right direction?

So, sound like a PN to you?