the pieces are coming together--finally

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jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/24/2014 2:57 PM (GMT -6)   
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)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/24/2014 3:04 PM (GMT -6)   
Welcome!

A GP isn't the best Dr for diagnosing Lupus, and certainly not the Dr to treat it (or other auto-immune diseases). You'll want to see a rheumotologist for more precise diagnosis and treatment.

Keep in touch.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/24/2014 3:18 PM (GMT -6)   
Yep, I realize I need to see a rheumatologist, so I'll get a referral from my GP.

Thanks!
Jan

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/24/2014 4:09 PM (GMT -6)   
In addition, I forgot to mention my short-term memory loss and dry cough for months. (I'm looking for my notepad that has my symptoms, but I can't find it after having it an hour or less ago. . . .)

Jan

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/24/2014 4:29 PM (GMT -6)   
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.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/24/2014 4:43 PM (GMT -6)   
Hello Joy--

I had a TENS unit, too. Seemed like the sticky pads kept coming off.

I have really surprised myself with walking. It's something that makes me feel good (mentally) and peaceful (emotionally). If I were walking by myself, I might not push myself so much, but having my pooch with me and seeing how much fun she has is incentive. It's not easy, and we take several water/gotta sit down breaks.
I'm paying for it today, though!!! We try to walk at least four times a week, weather permitting. It truly is my escape--and, as I mentioned, the dirt trail is beautiful. We see plenty of wildlife and are able to explore. I also have a good pair of sneakers that keep my toes from always pounding the ground and are great for walking.

Jan

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/24/2014 5:50 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/25/2014 1:01 AM (GMT -6)   
Jan are you running cold water temporary over the gel, letting it air dry and applying it only to clean dry skin? They also suggest placing it in the freezer for a little bit.
The best ones can do only 130 uses.

Animals are great motivators to get you moving. Just cleaning up the kitty box has a tendency to exhaust me. My heart says it's a big workout for me. ;-)
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/25/2014 7:56 AM (GMT -6)   
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... :)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/25/2014 12:35 PM (GMT -6)   
I got my tens at Walmart for $40. Very cheap considering...

I didn't change shirts though but my heart was pounding good.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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