hi I have all blood work negative my doctor says i look
good on paper for not having lupus and being healthy. My ana test is negative, my rhematoid factor is low, and
the test to determine inflamation or infection is nil. But,she tells me I look sick and my right hand is swollen with RA????
The exhaustion, fatigue and weakness continue and I still cannot shower in
the morning (when it is worst) because as soon as the hot water hits my arm and
leg muscles they relax to the point of collapse. I bruise easily and cuts take
a long time in healing. I experience rashes on my arms and chest as well as my
face. Even though these are quite red, I do not feel them like I did in
September when I had the hot flashes from menopause. At that time, I felt the
heat and was hot. With these rashes I only know if they exist because I see them
in the mirror or someone points them out to me. As the day progresses they
worsen. If I am in the sun or hot (after exercising for example) they worsen. I
go to bed every night with a wool cap on because I wake up every morning with
flu like symptoms: ear ache, sore throat, sometimes a fever, and a headache
(which is different from my migraines). I have shortness of breath that is
pointed out to me when I answer the phone and people ask me what I have just
been doing which is nothing. I regularly have cold sores and/or sores around my
nose that I can control by over the counter ointment if I get it when it burns
and is tingling. I constantly have a 'dizzy' effect in my head and at times I have to lie down because I feel like I
will pass out. I have red 'pimples' that are full of blood on my shoulders and
upper chest. My left hand continues to be red and swollen (the Diclofenac cream
does help in the mornings when it is at its worst) Finally my energy levels are still quite low. I have OA and suspect RA in my hand as it started to swell in Jan 2012 and has not stopped and now in last month other joints on same hand are swelling.
As well, gas, constipation (from pain meds), dizziness, lightheadness, feel of being sick all the time esp after eating.
HELP ME PLEAASE I AM 48 in two weeks
So, I have rheumatoid arthritis symptoms as well, but come up negative on the lab tests. I do not have all the flu like symptoms and blood pimples you have--mainly the incredible pain and swelling flair-ups in the lower leg joints and hands. Also numbness and tingling-Raynaud's-- in just the slightest colder temperature change. Anyway, what I am trying to say is that your symptoms, while some appear consistent with RA, some seem slightly different and pretty severe.
I know how distessing it can be waiting and searching for a diagnosis, and some doctors treat you like your crazy and others don't listen, and others do listen but don't know what to do. There definately is a small percentage of RA patients who do not come up positive on blood work, and they usually have a slower course of the conditon. Again, yours sounds pretty severe though. Have you sought a second opinion as well? Autoimmune disorders and other conditions like MS often take years to get diagnosed. We often feel the early symptoms but medical doctors cannot do anything until it progresses enough to start showing up on their diagnostics and then it is harder to treat. Our medical system is set up to treat symptoms and not necessariy to look systemically. As great as our medical knowledge and technology is, we still never seem to find things early enough to treat them before they become a major problem.
Hang in there, and I would seek a second or even third opinion if I were you. Obviously--that depends on much you know and trust your doctor. If you are seeing only your primary, definately go to a specialist. If you are seeing a rheumatologist, and feel like you have some unanswered questions, or are not getting the help you need, then I would seek that second opinion. Once medical, or any kind of doctor, graduates, they are no longer constantly in the presence of the newer research. They must attend ongoing continuing education credits and read the research themselves to stay up to date. Doctors will vary on this, just like any other profession. Often, patients have to be advocates for themselves, unfortunately. Even though it is hard, especially when you never have any energy to begin with, you may have to push back a little to get the help you need.
80% of what you said sounds like me! I'm interested in your question as Drs believe an Auto immune disease like lupus is whats wrong with my mother, my son and me but the testings come back partial positive to lupus but others negative on all three of us. Now my Aunty on my mums side has been diagnosed with Wegenergranularmatosis 6 weeks ago after having nuemonnia 3 times in 3 months, aches and pains and joint swelling and last week another older aunty has graves disease, I have been diagnosed with having past exposure to human Parvo B19 virus so that explained my Fatigue it seems to make you prone to Chronic Fatigue Syndrome. I now have sores all over my legs and some spots all over plus burning itchy scalp and that the Dr says is NeuroDermatitis, I had a spontanious blood clot in my arm in 2010 reason unknown, Sore throat in morning always drowning think oh i'm going to get a cold but never happens, Swelling in my hands, bursitis in my elbows, Rash on my face possible SLE symptom or Rosacia, Repetitive strain injury in both arms so lost my jobs, inflammation in sinuses, jaw, Costochondritis its of the lining between ribs, plurisy every 5-8 wks for a year till Flu Shot given, Been made to feel like a whinger or hypochondriac yet it's some positive tests and seeable symptoms and the way i feel that keeps me looking for answers one Dr told me we may never find so in ANSWER I believe tests are only a guide and we are not fully aware of results and their meanings for over 10 yrs I complained of Gall Symptoms but there tests showed nothing wrong over and over till i told my Dr i wanted to see a specialist had my mum tell him she had her gall out and it was a STRAWBERRY GALL he booked me in strait away and yes it was a CHRONIC STRAWBERRY GALL he said i must have had symptoms for yrs you bet but no-one beleived me because the tests told all they were wrong. CHEERS AND GOOD LUCK PEOPLE From TESS
Hi Lisa and Enja,
Easy bruising, delayed wound healing, joint problems and pain could be a genetic connective tissue disorder. Do you have any hypermobile joints? The weakness, dizzyness with showering can be an autonomic problem which goes with the weak connective tissue. When your veins dilate due to the heat, blood can pool in your legs so there's less left to go to your heart and head. This ca also happen after eating or getting up too quickly. It can give heart pounding or palpitations as well. Do you have low blood pressure?
If hypermobility rings a bell and you possibly have stretchy, tranlucent and/or very soft skin, look up Ehlers-Danlos syndrome or Joint Hypermobility Syndrome.Don't let the 'rare' get to you, it's very underdiagnosed. It often goes together with POTS and Mast cell activation disorder, which could explain allergy-like reactions, flushing, respiratory and gi-trouble and much more. Also rare, but not with this CTdisorder.
Good luck, stay on top of things and don't let Drs dismiss you.
All the best, Maggie