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Discussion Starter · #1 ·
Does anyone else have or had these problems. I am trying to figure out whats going on with my head lately.

Here some of my symptoms: consider I just got rid of shingles on left side under rib cage front to back :( a about 2 weeks ago the sores dried up and pain got alot better but still lingering when I move or sit in certain positions.

Please tell me: Do you all think this normal for sle flare? or in other words Have you ever experienced this symptoms with your lupus?

I have had excessive hairloss really bare on sides in spots, cheast pain, insomnia/not rested in morning, knee pain/inflamed joints, cramping in calves, loss of appetite, carpal tunnel in both wrists, fatigued, weekness in legs with burning muscle pain all this really started 2 mos ago then about 2 weeks ago Ringing in ears, also tingling nerve in legs and arms, now today been experiencing sensitivity to bright light, persistant headache in specific part of head, pain in head followed by tingling and numbness in face, pressure around right eye, tightness on right side of face, uncontrollable twitching eyelids, ear pain, neck stiffness , dizzness when standing, chills, feeling really drained getting scared. :sad:

Any advice would be greatly appreciated. I am thinking maybe my lupus is affecting my nervous system as it did years ago when I first found out I had lupus had some of the same symptoms but the disease was brought under control with predisone and plaquenil. Now inadditon to predisone and plaquenil on cellcept and nothing bringing this flare under control. I just got of the phone with my rhemy today and working me in tommarrow at lunch time. Says could be shingles not gone completely, or lupus related since in flare.

Thanks in advance for your input!
 

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Hello Leanne,
I should think you are scared. I am wondering if an increase in steroids might help especially as you have just had shingles. I am no expert though. Certainly lupus can cause all sorts of odd symptoms and I can identify with many of yours. At least you are seeing the Doc. tomorrow. Please let him know exactly how bad it is.
x Lola
 

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Hi Leanne:

I agree with Lola, I would be scared as well, at least you have a great rhumy who is seeing you quickly!

I hope you get some answers...

As to the headaches and ringing in your ears, this may be completely unrelated, however have you checked your blood pressure? When I flare (even though I am on BP meds) my BP rises and causes Headaches, ringing in ears, and numbness in my face. Of course I am not a Dr and everyone is different, however just a thought.

Best of luck tomorrow, let us know how you get on at your dr's visit.

Stephanie
 

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(((Leannelee)))

Shingles are so very painful.:hug:That alone is difficult to endure.

Your rhumey sounds like he is a good one. Glad he got you in tomorrow.

Love,
Lyn
 

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Sorry to hear you are feeling so terrible. It is difficult to know what exactly is going on. I do know the nerve pain from shingles can linger on even once the sores are gone.

Good luck with your appointment.

Take care,
Lazylegs
 

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Hi Leanne, I wanted to wish you well for your rheumy appt tomorrow and hope that you get the treatment you need to bring your flare under control.

Let us know how you get on.

Deb
 

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Hi Leanne from Leanne

I live in Winnipeg, Manitoba, Canada. Just wanted to answer your question about the shingles. Thats exactly where I get my shingles, left side, rib cage and wraps around. I also get it on my buttock. So painful, I sympathize. Puts me right out of commission when I get it. Thank the lord, I haven't had them for almost 2 months, its a regular thing with me. Just another manifestation of lupus. Leanne D.
 

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Discussion Starter · #11 ·
Thanks everyone, here's what the my doctor said:

My doctor says my blood work looks great right now just low lymph count which has been down now for as long as had lupus. She says I am having problems related to a flare of mucloskeletal system, raynalds phenomenon, panniculitis, and livido reticularis. My hair is falling out because cellcept dosage is too high being I am predisone dependent and taking 20mg a day like forever now. she wants to try and decrease cellcept from 3000mg a day to 2000mg and she what happens in 2 weeks. Says my hair should stop falling out and grow back gradually. She is thinking about discontinuing the cellcept and trying methodextrate if my mucloskeletal system doesn't stop flaring soon.
I really think the cellcept is working because I feel better and have more energy but knees, wrist, and ankles still swelled, inflamed, and hurt.


thanks for listening
 
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