First Signs of Lupus??

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Regular Member

Date Joined Apr 2007
Total Posts : 106
   Posted 7/26/2007 7:30 AM (GMT -6)   
Hi All,
I usually hang out in the chronic pain area as I have LPHS, a very rare and extremely painful kidney disease, When I saw the Nephrologist on Friday he was concerned about this kinda of rash on my back,thighs and inner arms it kinda looks like blood vessels under the skin, really hard to explain, anyway he had said " I am not saying you have this but this is usually the first sign of a auto-immune disease like Lupus but the 18 vials of blood we took from you that is 1 thing we are testing for as alot of ppl with LPHS also develop Lupus"....ok new things that have been going on, is my legs and arms sometimes just feel like concrete, and I have to stretch my arms alot as the elbow joints really hurt and my wrists, also my feet and hands are going numb like pins and needles alot, and another thing is I had to remove my toe rings& hand rings as they actually left cuts on me from the swelling in my feet and hands,Very tired but I am not sure if this is from my LPHS or maybe my meds or maybe the start of Lupus, did any of you experince anything like this, any input would be greatlt appreciated.
Thank-you &Take Care

P.S  Sometimes I have been having protien in the urine, which is new, I usually just have blood.

DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Oxycodone, Amitriplyne,Ace Inhibitors 

Post Edited (Stmll) : 7/26/2007 6:40:53 AM (GMT-6)

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 7/26/2007 8:53 AM (GMT -6)   
So sorry that you have to deal with new symptoms on top of what already sounds like a painful pain in the butt disease.

For me I did have some of the symptoms you mentioned. Legs and arms feeling like concrete, sore and stiff joints. I have not had the swelling although I know others here have. I have had fatigue (oh have I had fatigue)

Will be praying your blood work comes back negative for Lupus. In the mean time some of the others here can probably answer your questions a little better than I can. I havent had any major organ involvement, unless they consider my colon a major organ. (I certainly do : )

Hope your feeling better soon.

Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 7/26/2007 9:59 AM (GMT -6)   
Hi Tracey, I'm sorry you are going thru this. On the other hand if they find out it is lupus they may be able to treat your cronic pain better. Lupus is so hard to DX. There is no one test that will say yes or no. As far as the tingling pins and needles yes I have that alot. I sometimes get it just having my arms down at my side. if I put my hand dangling over a chair or somthing too. I don't mean dangling for 10 mins. or anything. I mean within a min or so I have to shake my hand out. The swelling has been awful too. From my knees to my toes. They turned bright red and swelled up so bad the tops of my feet would crack and bleed. It was like stretch marks. It's horrible. I hope you get some answers with these test. Please keep us informed on what you find out.
God Bless
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Regular Member

Date Joined Apr 2007
Total Posts : 106
   Posted 7/26/2007 10:02 PM (GMT -6)   

Hi Darlene & Carol

Thanks for the input, Yes it has been a hard pill to swallow that I have gotten LPHS with no cure in sight, but then Lupus too, like c'mon when is enough, I know others have it alot harder then I do, but I still have not digested the fact that this LPHS is a life long thing with opiates for the rest of my life, I am 34 M,with 3 kids, -  I get that to I usually sleep with both my arms over my head and I can no longer do that, it's like when I get them up there and comfy,they get that pins and needles thing going and I have to try a new position, Today I was up at the hospital with my son after approx 2.5 hr wait from sitting in the chair my legs were so red and kinda blotchy like blood in the veins, and so swollen my toes were hurting, so if there is no test to check for Lupus, how do they dx, by exclusion? or just symptoms..and just sitting here now with my feet up in the recliner my feet hurt sooo bad they feel really tight because they are so swollen...I will definetly keep you guys posted on what the Nephrologist has to say about all of this, Thanks for the info, very much appreciated :)  ,,,and yep I would consider your Colon a major Organ too...does Lupus attack all or any organ, I am really not familiar with Lupus, I need to do some reading on it...

Take Care


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Oxycodone, Amitriplyne,Ace Inhibitors 

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/27/2007 12:36 PM (GMT -6)   
Tracey, welcome to our forum. I'm not only sorry to hear about your LPHS (which sounds extremely painful), I'm also sorry to hear thta you might be developing lupus. I think there should be some kind of clause that only allows people to get one painful debilitating disease - one is more than enough.

Some of your new symptoms are present in lupus and I'm glad your nephrologist was on top of things enough to take notice of things. Do you know if he has any plans to refer you to a rheumatologist. I'm guessing you are waiting on the lab work before taking the next step. If you click on the resources in my signature, you'll find some good info about lupus and the symptoms as well as the diagnostic criteria.

Please keep us updated on what you find out and also feel free to ask any questions you have. Take care and I'm really sorry you are going through all of this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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