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Ehlers Danlos and ?

I was diagnosed two years ago with Ehlers-Danlos hypermobility.  I have the skin laxity, hypermobility, and easy bruising.  However, I also have
    
    * extreme fatigue (tiredness)
    * headaches
    * painful or swollen joints
    * swelling (edema) in feet, legs, hands
    * pain in chest on deep breathing (pleurisy)
    * butterfly-shaped rash across cheeks and nose (I've had a dermatologist look at this and say it was either lupus or early age rosacea)
    * sun- or light-sensitivity (photosensitivity)
    * abnormal blood clotting
    * fingers turning white and/or blue when cold (Raynaud’s phenomenon)
    * mouth or nose ulcers

These match up almost exactly to the lists of Lupus I have found, and yet my ANA titrations have always been declared negative.  I have photophobia to the point of burning in sunlight within two to three minutes in the sun, and within ten minutes even with high-level sunblocks.  I have problems with chronic nosebleeds and excessive bruising from things that shouldn't bruise me, and flareups where my functionality and pain levels are so high that I can't lift a full 8oz cup without extreme pain.  Although I have had doctors tell me that its likely just Fibromyalgia, I feel that this doesn't cover the extreme photosensitivity, the pleursy and the rash I get across my face and even eyelids from both sun exposure and any time I've had a flareup.

Is there any reasonable way to determine that this is a form of Lupus that simply doesn't show as ANA positive or that I'm just not far enough along in the disease that I'm not showing up yet in the tests?  I don't want to feel like I'm just being paranoid or wishing lupus on myself, but I've already been doing this for ten years (since I was 15).  Doctors still don't have a good answer for my symptoms because they automatically remove Lupus from the diagnostic list as soon as the ANA is negative.  It is the only thing I have found in my extensive research that matches exactly with my symptom list when combined with Ehlers-Danlos.  Any thoughts or ideas about what else it could be or maybe professional info on ANA-negative lupus would be welcomed.
4 Responses
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the MedHelp forum!
People with Ehlers Danlos Syndrome bruise easily. Deficiency of Vitamin B12, folic acid, or Vit K could be the cause of bruising. They could also be fragile spider veins. The bruise could also be petechiae, which are pinpoint-sized red dots under the surface of the skin. They can result from autoimmune disorders, such as lupus or rheumatoid arthritis, bone marrow disorders such as leukemia, inflammation of the veins, as a side effect of certain medications. Since you have a facial rash, possibility of lupus should be seriously considered and followed up.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
620923 tn?1452915648
Hi we do have a group for those with Ehlers-Danlos....
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

Sometimes there r other issues in addition to the EDS...I have quite a bit as well...many r autoimmune issues....I am sure if u look u will find it too.The raynauds is part of EDS....not a separate issue...my NL told me it was not raynauds, but the EDS causing the issues I was having.

May I ask, r u on ne meds that could be attributing to the sun sensitivity?

The swollen joints could be RA..another autoimmune disorder.....

Have u had ne testing to determine the cause of ur headaches?....and how often do u have them ...r they bad?...migraine like?

"selma"

Avatar universal
Hello,


     I was searching for terms related to Ehlers Danlos Type IV concurrent with mouth sores and lupus like rashes (which I've also had for years- since my 20s, and my daughter, 19, as well), and came upon your post.  After my 4th genitourinary hematoma surgery this summer, we were sent to a Rheumatologist, who has just diagnosed me with VEDS.  Prior to this, I had been diagnosed with lupus for years first, then Behcet's (because the mouth sores fit with the bruising and hematomas).  We were really surprised to learn that all the symptoms except the mouth sores were actually due to VEDS (the doc picked up on the hypermobility and joint problems/pain because I didn't think to tell him about them).  I had no idea that they could be relevant because I'd lived with with them for so long.    I share your concern about the lupus vs EDS issue, because the treatments for the bruising in lupus is contraindicated with EDS (particularly in the avoidance of prednisone in the latter, because it weakens the blood vessels.

      When I joined a VEDS support group, I found one other person, who, like us, has mouth sores with VEDS.  I've also learned from fellow Vascular EDS folks that it is not uncommon for some to be erroneously diagnosed with lupus or Behcet's at first because lots of the symptoms and signs look autoimmune.  Although the Rheumatologist is quite certain that I have VEDS, we are having some genetic testing to confirm it for sure; my daughter is only 19, and she has many of the characteristics and symptoms I had in the 20s.  Although I hold out a spark of hope that the diagnosis is EDS of a less fatal type, along with a concurrent autoimmune disease like Behcet's, it seems that more statistically likely that the mouth sores are an aspect of weakness in the oral cavity, due to the rubbing and weakness of oral tissues.

     Do you know which type of EDS you have?  There is some crossover between types 3 and 4; you might want to confirm genetically to rule out Type IV (lung issues tend to favor this type as well).

     All the best to you!

Diana Cleaveland
Avatar universal
I know it's been a while since you posted, but if you're still watching this thread, I thought I would add something.

My mother, myself and my daughter all have EDS, although EDS never accounted for our funky blood work docs have been trying to find out what other auto immune disease we had as we all had negative or speckled ANAs. Well my mom just tested positive finally for Lupus. Her Anit DS DNA tests came back strong positive although ANA is still neg. Doc said sometimes you don't catch a positive ANA, but she does indeed have EDS and Lupus. I wonder if my doc will want to retest me now, as our labs were always almost identical.

Anyway, have your doc keep checking your blood, and have him run you DSDNA! My mom was negative her whole life until now. So it CAN happen.
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