Do I have Lupus? I'm tired of suffering

[KimSuffers]

I am a 36 y/o African American female who believes she may have Lupus but hasn't been taken seriously for 6 years now. I've been asked the typical questions like am I depressed or stressed. Brief history: Was always strong, in shape, was in military, lifted weights-the whole nine. One day realized I could barely arm curl the 20 lbs that I did with no problem for months. I always had the blue fingernails in the cold and swollen hands/feet in the summer-was diagnosed with Reynaud's. Was eventually told I had a positive ANA but was told it could be a general inflammation-had another ANA then it was negative...can't that change? Now 6 years later...and for the past 3 years I have progressively worst neck,shoulder,wrists, fingers, toes, feet and knee stiffness and extreme joint pain-feels worst in the morning like I have been in a coffin for a year-and in the evening/night. I have great difficulty holding my tooth brush because I grip it and my joints stick when I do that...washing the dishes is the same thing...now I have numbess down both arms, numbness in my feet. I am TIRED all the time. Since I was in the 6th grade-I noticed I get the "heart pain" and if I take a deep breath it's worst..like a knife...then is subsides and my son has it too. The last time I saw little round circles on my arms was a year ago while having a car wash. I have night sweats. My legs and feet swell. Now all these symptoms and I'm sure I'm leaving out some, first came separately now all at once. Just had another MRI of my neck because that is what they are focusing on because of my arm numbness...but they need to put all the symptoms together. Is it me? I saw a Rheumatologist and Neurologist, had painful nerve studies done for them to tell me I have carpal tunnel...then no you don't..now yes you do. I'm supposed to be getting shots in my neck for my neck pain on November 25th, 2009. I'm just frustrated.  Everyone has always called me a hypochondriac. I want someone to sit down, listen to me tell all my symptoms, do all the blood tests and help me. Maybe try the Lupus meds and see if it works? I was such an active person this is too much for me. I am a military spouse and we have Tricare insurance I don't even know if I can just see my Primary Doc get and get a referral like to someone who specializes in this? I may not have Lupus but I think all these symptoms are connected. I don't know where else to turn so I turn to the internet.....


This discussion is related to lupus arthritis.

[adamhi]

Kim, your not alone having doctors that don't take everything into account and having people think you're a hypochondriac.  It has been very frustrating for me to have family members who still refer to my arthritic condition years after onset refer to it as in my head or from having the flu or something...ugh!  Anyhow, the way I resolved my problems was to shop around for better doctors until I finally found a great one.  I recommend you do some major online searching for doctors that are recommended to be the best in your geographic area and arthritis.  If you're in Chicago, Dr Victoria Brander out of Northwestern Hospital is fantastic...I'd say the best.  Keep on asking questions from your doctors and searching online for answers and you'll find the right treatment sooner than later...good luck to you.

[KimSuffers]

Also thank you txsilver. The doctor I am seeing today is a specialist doctor of Osteopathic medicine which I was referred to by my primary...well Physician Assistant..as the military allows Physician's Assisants to be your Primary "Doctor". I am going to hopefully have a better outcome with him because I am a recent patient of the specialist...thank you for your post.

[KimSuffers]

Thank You Raven for taking the time to respond! I totally agree with you about getting my records together-which can is frustrating as a military family with the constant moving. I think I will take one day next week to get my records in order, gather them up, and go to all the specialists I've gone to-and there have been many-and get copies of everything. I think that is like 80% of the problem. Creating a bullet list actually forces the doctors to listen and may answer questions they have of me before they ask them. Wow and after 20 years? And you say you have symptoms similar to mine? My God I can't imagine suffering for that long with these symptoms. I need to get my bum in gear and get my paperwork together so I can be taken seriously-you're absolutely right. Today I have the results of an MRI I took last Friday. I'm not keen on the shots in my neck and I may refuse it if it makes no sense to have them in relation to the MRI results. I'm tired of being told direclty about a plan of care without my input. I don't like feeling bad when I question what they are doing to me. Well I'll let you know how that appointment goes and again, thank you so much for taking the time to post and I will take a look at your other post later today..

[txsilver]

Great post by Raven.  Do not hesitate to change doctors to get a fresh perspective on your symptoms.  A referral to a specialist may comes easier, too.  Check with your insurance as you may not need a referral to see a specialist.

[Raven17]

I can  certainly understand how you feel.  I was finally diagnosis with psoriatic arthritis with a lot of similar symptoms as yours after 20 odd years.(I have a post under my name Raven17 "Is it Arthritis, MS, something else, or am I just a hypochondriac?"

My problem was I got the arthritis before the psoriasis (skin).  Don't give up.  I put together a book with the results (copies of the reports) of every MRI/Xray I ever had (they have to give that to you because it's yours) and a chronological description of the symptoms I was experiencing in bullet form for the new remumy doctor I went to.  That did the trick.  Seeing it all laid out in front of him brought it all together.  Sometimes if the doctor only sees bits and pieces, it's hard to put it together, especially if you're not following the typical disease progression.  They would always tell me "oh, you just have tendonitus".  Well, WHY?....  Also, if you can get copies of past blood work, that would be good also.  I always ask for copies of my blood work from my doctors now and keep my own folder.  A patient has to be more proactive today because you get less time with a doctor and having it in writing for him/her to read instead of hear saves a lot of time.  I read once that a person retains 7% of what they hear and 60% of what they read and 90% of what they hear and read.  Good luck and don't give up.,  You are not a hypochondriac.  The simple fact that you question yourself puts that to rest.  a hypochondriac is certain that she's sick!.