[ashleyjoclifford]

i was 21 when i first heard "lupus" in reference to myself. that was 4 yrs ago. i developed an itchy hive-like rash..only on my joints. the worst was my fingers. they became totally red and inflamed and hurt to the point of just breaking down to cry! the ER doc suggested lupus w/no real answers but the blood tests were neg. so i was sent on my way w/no answers. i had joint pain, mostly knees and shoulders then. but no real other symptoms. ffwd 2 yrs, during my second pregnancy. i became VERY ill. i had alot of joint pain, and just generally felt horrible. this is when the migraines got worse, and i developed the mouth sores and occasional nasal ones. i was very tired (but also pregnant so this could be confused). i was referred to a rheumy and he suggested fibromyalgia (which they diagnosed my mom with) not lupus after his series of tests. since then, i've developed more symptoms. dry eyes, and hair loss. the mouth sores are sometimes unbearable and i have joint pain in a few of my toes to the point of being hard to walk on them sometimes. i also believe i had a related rash on my face but it didn't look like the ones i've seen samples of online. can anyone help or offer suggestions?!

 

[ashleyjoclifford]

p.s.

recently, during my 3rd pregnancy i had breathing difficulties and was treated as having "asthma". although i don't. at least i never had before. i also have chest pain which just started in the past few wks. i dismiss it as "getting a cold" alot though.

 

[Maia]

I hope that the rheumy that you have seen has done all the relevant testing (ANA in particular), especially including the anti-cardiolipin antibodies and lupus anti-coagulant tests (these are often forgotten or overlooked). If possible, try to obtain the blood test results for the last 4 years so that you know what has been run and what the results are.

There are many causes for symptoms such as yours, including lupus, sjorgen's syndrome, tick borne illness, Hepatitis C can contribute to joint pain, and there are more. All of these should have been investigated.

It sounds as if all your bloodwork is negative at the moment, it has been negative for some of our members here while they had symptoms for years before turning positive. Many doctors will not diagnose lupus without clear evidence in the form of bloodwork and symptoms, and 98% or more of lupus patients will have positive bloodwork so it is uncommon to get a lupus diagnosis without it. In your situation, some doctors may diagnose UCTD (Undifferentiated Connective Tissue Disorder) & do a trial of medication such as Plaquenil to see if it helps.

The best thing for you to do is to keep going to the doctor, inform them of changes to your health/new symptoms, and possibly getting second opinion if you feel in any way uncomfortable with the care you are receiving presently. Good luck - yours is a difficult position to be in - sick but not convinced you are appropriately diagnosed/treated since some of your symptoms do not fit with fibro.

PS Have they offered any kind of treatment for the fibro?

 

[ashleyjoclifford]

i'm pretty sure the rheumy i saw was not that thorough. he did the ANA and a physical exam and an xray of my knees (to check for arthritis) that's pretty much it. he said it sounded more like fibro yet, offered no treatment. my mom has been in this battle for years! she is actually on medication to treat her pain which is worse than mine currently. she was also tested for lupus and had alot better work-up than i did. she has also had work-ups for MS. i dont even bring up the fibro to anyone b/c i feel they don't take it seriously. right now, i have a MOUTH FULL of ulcers and i'm getting tired of it. the ear, nose throat spct. was baffled and said it's from stress. the symptoms i experience are not all at once, is that pretty normal? sometimes my toes hurt so bad and they are red and swollen and i have to soak them in hot water for any relief, if any. i think i should seek a second opinion. like i said, my mom has been through this for yrs and i believe there is still something more to find!