Suffer from what seems to be an auto immune disorder, for many years... dr said fibromyalgia, but nothing working.

[shananpoo]

All my life, I have been sickly. Since the birth of my second child, immediately fatigue hit me hard. I told the dr at my six week check up and was told hormones. It got worse, and this was nine years ago. I was told I tested negative for lupus, and arthritis. So dr said fibromyalgia and tried lyrica. That made symptoms worse, now on cymbalta with little change and new concerns.

I have recurring basal cell carcinoma, skin cancer. Im very sensitive to the sun, and lights. I get dizzy type spells in UV lighting. I have severe edema in both legs. I have widespread joint pain and lower back pain. I have sores in my ears that dont heal. I have red spotty rash across my chest that gets worse with sun or heat. It will burn and itch. I have night sweats now, and change clothes during night. Im 36 and had endometriosis at 11, which may also be returning. Heavy cycles, severe breast pain 3 weeks of the month, back pain worsens. My legs suddenly have numberous visible veins and unexplained bruising on upper legs. Im exhausted all of the time, but I dont sleep well. I have tried vitamins, herbs, supplements, diets, exercise, etc. Over the counter pain relief doesnt touch the pain I feel. I cant get a dr to listen to me though. My new dr says this doesnt sound like fibromyalgia, so im requesting a specialist now. Any thoughts?

[shananpoo]

I also had alot of dental issues, and by the age of 35 got dentures on top and bottom. I have constant swelling under both eyes, redness over eyelids. I get indentions from anything I touch/hold in my skin. And over past few yrs my toenails have gotten HARD and curve imwards

[SarahHeney]

Are you under rheumatologist? If not I think you need re-refered as auto immune blood results can develop over time. Get doc to check your Vit D levels as I think you are deficient. Also check for anaemia and full bloods and kidney function. Also thyroid function. I wish you luck. Keep pushing for answers xx

[Paul_Howard Partner LUPUS UK]

Hi Shananpoo,

I agree with SarahHeney, if you are not currently seeing a rheumatologist, it is worth asking for a referral. If possible, it may worth trying to see one that is a lupus specialist. If you tell me whereabouts you live, I can tell you who your nearest one might be. By seeing a specialist, they may be able to look past negative blood tests and make a diagnosis based on other clinical markers.

If you need one of our free information packs about lupus, including booklets on diagnosis, please send me a private message or email [e-mail] with your name and address.

[Maresy]

Shan, I posted this before to someone, that I was extremely ill w/ all the markers of lupus, but sero-negative for over a year, until I was hospitalized, & then suddenly my tests were through the roof. My original doc just thought it was post baby hormones & actually scheduled me for a psych eval at one point! Through my 26 years of having lupus, I occasionally have instances where I felt well & yet tests showed lupus activity. Or, feel just horrible (like right now) & my new rheummy (who is more interested in typing on the computer than actively listening) says things are great, no problem, b.c. tests look good.

I can't figure out why one specialist says sero-negative lupus is real (retired rheummy, who I miss -- yet another says he doesn't believe in that "hogwash."

I think lupus is just such an odd disease, so individual to each person, & is so misunderstood. My second rheummy (the retired one) said, "Practicing medicine is more of a mystery than you think, and I don't know exactly what's wrong with you, but I won't give up trying to find out. And in the meantime, let's start trying some things to help you." I broke down & cried, I was so relieved someone didn't think I was crazy.

Don't give up, keep trying. Change Drs if you can. I'm looking for a new one too.

[Alex97]

I m glad I m not alone! I have been back and for to gp for 7 years with symptoms varying from stoppwd periods, constipation, joint pains in hands and feet.refered to rhumatologist after raised sed rate last year who ran loads of blood tests but all negative. in the year I have veen seeing him I have developed raynaurds, cold utecaria and recently nail psoriasis. I had steven johnson syndrome after taking hydroxichloroquine so now not on any medication other than amitriptyline for sleepong and I have recently developed really dry mouth... put it down to tablets. rheumatologist says my symptoms suggest lupus but blood tests don t so I habe been diagnosed with UCTD

[shananpoo]

Thank you everyone, the next day I was seen by GP due to the edema, my bp was really high again. Im now on meds for that, she also stated theyre concerned with kidney function, due to prior protein in urine. She said signs point to lupus and she reordered a series of bloodwork then. I go back in two weeks for results and a referral to a rheumatologist. Frustrating some doctors listen, some dont. The edema has subsided quite a bit, yet my back is HURTING alot still. Im im the U.S. do u have referrals for the states at all? I have been extremely depressed

Even tho im on cymbalta and zoloft currently. So shes discussing changing that as well. Thank u everyone, mainly for listening... i feel so alone lately and almost mental anymore.