the pieces are coming together--finally

Hello All--

I'm new to the forum and am so pleased to have read post to which I can truly relate!
Apologies for the lengthy post for my introduction. . . .

I realize this started about eight years ago, when I was 53. (what timing because my mother died from lupus complications at the age of 53)
I was having awful joint pain and went to a rheumatologist. He scoffed at me, telling me that I was too old to have lupus. Went to another rheumatologist, and he said I had fibromyalgia. Neither were helpful. I put it on the back burner (although I have had a knee replacement and neck surgery), until a couple of years ago when a couple of my toes became quite red. (Oh, I have Raynaud's, but never an official diagnosis--simply knew from my hands, and my mom had it, too.)

My GP had no idea what was the matter with my toes, and I let it go because it would come and go, nothing consistent. I also told her during one visit that my scalp was extremely tender--and she had no clue or suggestion. That episode went away.

Next possible signal that I never associated with lupus . . . bladder infection every time after intercourse. Needless to say, that activity has been curtailed.

Also began Cymbalta last fall--that really helped my crazy moods!

My neck had been hurting for years--have always used a heating pad. Arms weak for years--even tough to hold my blow dryer up for any length of time.
Started having bad headaches, but not migraines.

That takes me to a couple of weeks ago.

I looked up some photos of toes with Raynaud's, and I saw some that looked just like mine! (puzzle pieces began fitting together)
And now I knew why my face flushed over my nose and cheeks when I was out in the sun! AND why I have had scab area(s) on my scalp. (I always thought it was from getting my hair colored, but it's been four months ago.

I've lost weight (diet), but my energy level hasn't increased at all. I think back and remember that if I did a lot of stuff, say, for two days in a row, the third day was a rest day for me.

Now, my lower back hurts--along with my headaches--and neck ache--and knees and sometimes an elbow--and my shoulders ache. Aye yi yi!!!

OH! I failed to mention that I feel like I've had menopause for 20 years (since my hysterectomy). Talk about hot flashes! And speaking of hot, the flush that I'll call a butterfly rash appears with sunlight, sometimes blow drying my hair, and sometimes when having wine.

SO, I have an appointment with my wonderful GP (a different one) this coming Thursday--and hope he'll request some blood and urine tests.

One more thing, for the last week, my toes and the balls of my feet and a bit beyond burn like crazy when I go to bed. . . .

Thanks for reading and being patient!
Jan

OH! Good news . . . I was able to push myself yesterday and walk 9.25 miles with my pooch. MY toes were hurting, as was my back and knees, but I was determined. (We live in beautiful mountain surroundings, with a fantastic trail along a gorgeous creek.) (Wyoming)

Yep, I realize I need to see a rheumatologist, so I'll get a referral from my GP.

Thanks!
Jan

I bought a TENS unit to help me with my joint pains recently. It feels weird but so far it seems to help.

I'm surprised you being able to walk so far. I'd be collapsed on the side of the trail before I get started good.

I should acknowledge that most days, I have a tough time completing a chore as simple as laundry. Today, I'm trying to clean something else--and keep taking breaks. . . .

It's also tough to drum up the energy to GO for a walk, but once I'm out, I sure am glad. :) The fresh air helps a lot. And, I'm so sorry for those who cannot participate in activities that make them happy. My day might be around the corner.

Jan

I wish I would've tried what you mentioned with the TENS unit, but I didn't. I returned it...
Seems like it would be exhausting to get the unit arranged in the right places--and hope you don't have to change shirts. That's a workout! :)

Joy, whatever counts as an accomplishment to you IS an accomplishment--even the litter box. I understand--I have three kitties. I consider that as an item I can scratch off my list, not simply an incidental thought... :)