I have no idea what is going on! Need advice please!!!

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Jade13
Regular Member


Date Joined Oct 2006
Total Posts : 81
   Posted 7/12/2013 11:06 PM (GMT -6)   
Ok,so I have had ongoing joint pain, mostly hands,knees and feet.
Awful fatigue, I am sleeping 11 hours a night and having to take a
nap at least once a day. Night sweats, and a swollen lymph node in my neck.

Bloodwork came back low wbc,low rbc, low lymphocytes and high monocytes, ANA positive Nucleolar. Sed rate is normal and complement
component c3c is low as well as c4c.

I saw Rheumy and told him my symptoms and that I have had to go on short term
disability (I'm a surgical tech) and having a hard time working. He seems to think that even though I have at least three of the criteria for Lupus, that I am fine and just need to take a couple tylenol before
work. WTH? I would have four of the criteria but since my hands and toes don't turn PURE white when they are succumbed to cold I surely do not have Raynauds according to him! Even though they do turn pale and hurt to the bone! I can even have socks and boots on and my feet are freezing!

I just want someones advice. Have any of you guys gone through the same thing? I just want to find out whats going on with my body.
And, this Rheumy seems to have no idea.. Please HELP!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/13/2013 12:22 AM (GMT -6)   
I'd find a different rhuemy.

The hand & foot pain is horrible at first. After awhile on plaquenil it will tame them down some.

Do you have the photsensitivity? Correct me if I'm wrong, but don't they use halogen bulbs in the surgery lights?

Halogen bulbs are the worst for causing increased pain in most lupus people. I can't be anywhere near one or I feel absolutely terrible in just 2 minutes. You need to stay away from anything that emmits UV rays (sunlight, fluorescents, CF bulbs, tanning lights, Halogen lights).

My mother has Raynauds, but only one finger turns completely white with hers. Mine turns red with white spots all over.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Jade13
Regular Member


Date Joined Oct 2006
Total Posts : 81
   Posted 7/13/2013 11:06 AM (GMT -6)   
Thank you so much for the advice! I think they upgraded our lights
to LED now. That is one thing that I have not noticed is the light
sensitivity. And is there always joint swelling? I have had my hands swell but not all the time and Rheumy said "If your joints are not swollen all the time,it's probably not Lupus." Is this true??
_________________________________________________________________

39 yr old female
Diagnosed with Left-sided UC 2006


Canasa Supp. 1 or 2 a day(only when flaring)
6mp 75 mg/day
Colazal 750mg 4xs/day(cannot take anymore, made d worse)


"It can't rain all the time"

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 7/13/2013 12:58 PM (GMT -6)   
It doesn't sounds like your rheumy is particularly helpful. I would try to get a second opinion from another rheumotologist.

A good way to find a rheumy experienced with Lupus is to check with www.lupus.org - find your local chapter, then contact them to see what local rheumies are on their board - these are the folks actually interested in helping Lupus patients. Your current Dr doesn't seem very helpful at all.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/13/2013 4:15 PM (GMT -6)   
Jade, my hands don't swell all of the time. They will throb something horrible and look totally normal.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Jade13
Regular Member


Date Joined Oct 2006
Total Posts : 81
   Posted 7/13/2013 8:12 PM (GMT -6)   
Thank you all!! Lynnwood I will definitely look up the local chapter.
Somehow,someway I will get to the bottom of this!!
_________________________________________________________________

39 yr old female
Diagnosed with Left-sided UC 2006


Canasa Supp. 1 or 2 a day(only when flaring)
6mp 75 mg/day
Colazal 750mg 4xs/day(cannot take anymore, made d worse)


"It can't rain all the time"

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted Yesterday 11:02 PM (GMT -6)   
Jade,

Sound like you need a second opinion. That's a common thread for a lot of us. Some of us have been through multiple Rheumy's before finding the right one. I've had like 6 now, the current one I have is okay, he is knowledgeable enough. He, however, has a tendency to do a bit of back stabbing to me, which both myself and my hubby don't care for. Unfortunately, I'm a military dependent and don't have a lot of options when getting Doctor's. It's usually the person that's assigned to you is what you get.

I suffer from sun sensitivity too, my skin burns and itches once the sun hits me. We only use LED lights now in our home. They are a bit expensive to purchase, but the last longer than regular light bulbs and use less wattage so your electric bill is lower too. It cost us around $130 for 12 LED lights.

As for your joint pain, I can't offer a lot for the pain, except that I use heat when I hurt really bad. I also use bengay, tiger balm, biofreeze, icy hot to rub on my joints when they hurt badly. I also get regular massages, I do stretching daily, and if I'm really bad I take shower as hot as I can stand them. If I had a hot tub around I'd be in it all the time.

Good luck at finding a new Doctor and I hope that they get you the help you need.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Jade13
Regular Member


Date Joined Oct 2006
Total Posts : 81
   Posted 7/16/2013 11:02 AM (GMT -6)   
Thank you Barbara. I did see another Rheumy yesterday and he
took 5 more vials of blood as well as Xrays of my pelvis and knees
He checked me out thoroughly for swollen joints etc. Yesterday
was a pretty good day, joints were not painful just the fatigue!
It kills me! He thinks its probably not Lupus but a complication of
my UC. But am I currently not have a UC flare. So, again I feel lost
and confused....
_________________________________________________________________

39 yr old female
Diagnosed with Left-sided UC 2006


Canasa Supp. 1 or 2 a day(only when flaring)
6mp 75 mg/day
Colazal 750mg 4xs/day(cannot take anymore, made d worse)


"It can't rain all the time"
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