Waiting for dx

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Regular Member

Date Joined Nov 2010
Total Posts : 392
   Posted 12/1/2010 7:19 PM (GMT -6)   
Ok. I've been posting under the fibro list but not to sure. Went to a rhmy a few weeks ago, had the blood drawn and x-rays taken. Now I'm waiting for my next appointment, not until the 16. My sister thinks I have fibro, she told me that a couple of years ago. But some one else told me they thought I had lupus over 10 years ago. She thought that after I developed a rash on my hands, only on the palm side. They would be little red spots that felt like a pin sticking you when you applied pressure then turn into a blister but there would be no liquid just dry. about the same time I had an eye problem and was told that I had a ripe in it but had not injured it. The eye doctor told me that it could be from stress. I still get a spot from time to time. Never could have it repaired it's right in the middle of my sight. I have never had a rash on my face that I can remember. I do get spots on my scalp, in my nose and mouth. They are like little pimples and hurt or burn kinda? I have numbness in my hands. My feet get cold a lot, I sleep with a heating pad at the foot of my bed.  I could go on but I wont. Just having a hard time of it and can't stand not knowing what's going on. Anyway, does this sound like anything any of you have or have had? Any input will be helpful. Thanks

Regular Member

Date Joined Apr 2011
Total Posts : 20
   Posted 4/5/2011 6:14 AM (GMT -6)   
Hi Megosun,

I notice you wrote this back in December, so forgive me for the late reply! I only just joined the forum!!

Your symptoms sound very similar to mine. 3 years ago, it all started with a rash on my hands very similar to how you describe yours. I had this rash for 6 months in total, went to several Gps who were clueless as to what it was. Eventually Im sent to a dermie who did a skin biopsy, bloods, and chest xray. She diagnosed it as Lupus Pernio, a form of chilblains. Thing is, this condition has nothing to do with Lupus apparently, but is usually related to another autoimmune condition called Sarcoidosis. Because my chest xray was clear, this was not suggested. I was just prescribed dermovate ointment and sent on my way. it cleared up a few weeks later, only to reappear a few weeks ago , after 3 years. I also have a milder version on my toes this time.

I also have what I think is undiagnosed Raynauds....my hands and feet are always freezing cold..especially my hands. Turning purple, red and white depending on temperature. I get tiny blisters in my mouth, on my tongue and inside my cheeks and inside lower lip. They dont get sore, they are just annoying really. I got a red rash on my nose last summer, which is still with me....my doc said it was roseacea.

Im also having eye trouble. Last summer, my right eye swelled up a bit and it felt very gritty like there was something in it. I thought it must be a sty of some sort so i started using OTC eye drops, which only made it worse and stung it really bad. I had a burning pain in it. It went away after a week. Since that time, ive been getting the same burning pain in both eyes on and off. Not that I would be in severe pain with it, just more of an irritated sort of pain. That only lasts a few seconds at a time. Nail changes that have appeared in the last few months....a red line/band going across the tip of each of my fingernails.

In the past year Ive a whole lot of new symptoms...severe fatigue, joint and muscle pain thats progressively getting worse, headaches, pins and needles, numbness and stiffness in arms and legs. I get a prickly feeling all over, vibrations, muscle spasms alot of unexplained neurological symptoms. The list goes on. Im only 28.

Ive been tested for Lupus by my family doctor...which came back negative. None the less, he has referred me to a rheumatologist, as I just cannot put up with the pain any longer and hes also at a loss at what to do with me...he calls me 'a bit of a mystery'! Im expecting to get an appointment in the next 2 weeks. Hopefully, ill get some answers.

Hope you are doing ok now and I hope this has helped you a bit even though its very late! Its so hard coping with all these strange symptoms and not knowing whats going on. Or being told that its all in your head.

I wish you good luck and hope you get some answers soon....

Take care,


Regular Member

Date Joined Nov 2010
Total Posts : 392
   Posted 4/5/2011 10:53 AM (GMT -6)   
Thanks for responding.
Still no answers. Nothing ruled out nothing confirmed.
My thyroid is still messed up. Going back next month to see if there's anything different.
Made an appointment with a new GP for tomorrow. See what he thinks.
The new Rhmy is still trying to figure things out also.
Not a good day for me. The weather is dreary and so am I.
Plugging along doing laundry and cleaning.
Here's to feeling better and finding the best out of each and every day.

Synthroid (dose keeps changing once it's stable I'll update)
There are other meds but they also change almost every month. lol

May the sun shine on you and warm your heart.
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