New and ignorant

I wouldn't be so quick to diagnose yourself with AVN. It's pretty rare. You wouldn't have AVN in all those joints; you would be bedridden if that were the case. It's usually found in one joint, such as the hip. More likely, you have arthritis from Prednisone use.

Fibro is more muscle pain than joint pain. If you have muscle pain, it's easy to distinguish between the two. Plaquenil helps Lupus joint pain (which is usually severe and symmetrical), but won't help arthritis. You'd need anti-inflammatories for that, such as Advil or Naproxen. I take 1,000 mg's of Naproxen a day to help with that.

Taking Prednisone for long perids can also cause steroid myopathy, which can make a person have trouble standing after sitting in a chair. I'm not sure what you have going on, but your Rheumatologist should be able to figure it out with tests and symptom descriptions.

That is great news! Then the Plaquenil, or other drugs will more then likely help! I really can have hope again! I know I am driving you crazy, my appointment is Thursday, lucky you. But I am greatful to have your feedback. All of these years in pain, yes I am desperate to find answers, and gain control of at least some of the pain and fatigue. The thought of being active while playing with my grandchildren is like a dream come true. I hope this is the answer. I got happy tears!

yay for happy tears!!

You're not driving me crazy. You are questioning things and that is why we are here. AVN requires surgery, so if you did have it, you'd have to have surgery on every affected joint. I have not heard of that happening! There have been a few here who have had AVN in the hip, but not too many considering all the people here on Prednisone.

Plaquenil should help some, but as I said, it only helps Lupus joint pain. Before I started Plaquenil, I had pain in both elbows, so bad I could barely bend them. That lasted two weeks then it moved to my shoulders - couldn't raise my arms. Then it went to my hips, etc. It just moved around but was always symmetrical. After about two weeks on Plaquenil, that went away. I've never had it again. I do still have pretty nasty muscle pain which Lyrica is helping, and arthritis joint pain which Naproxen helps, but I still feel it in my fingers, hands, ankles and toes.

Rhonda, I am sure that whatever meds you get will help. Don't expect to be totally pain free, that may not happen. It can be very difficult to control. I take 10 mg's of Prednisone a day, 1,000 mg's of Naproxen, 10 mg's of Flexeril (muscle relaxer), 2 Vicodin, 400 mg's of Plaquenil and 100 mg's of Lyrica, and still battle pain on a daily basis. Most days it's tolerable but I am getting pretty whacked out on the drugs. I certainly can't function without the meds and am having a hard time functioning with the meds. The new addition of Lyrica makes me feel hung over and dizzy. I'm trying to get used to it and am really hoping it goes away in time.

Good luck on Thursday. I truly hope you have a thorough doctor and one that will listen. That makes all the difference. I can't wait to hear how it goes!

The pain in my stomach is back. So I have made the appointment with the GI doctors. I also have an appointment to get an ultrasound. Soon I will need to use my toes to count all of the doctors that I am seeing. I have already used up over two weeks of leave time, and it is not slowing down at all yet. I got sick this morning, and my nose started to bleed, so I am really worried that my platelets have dropped. I had intentions to get my blood drawn today, but I couldn't make it out of the house. I have a call into my PCP to okay an increase my stomach medication with the pharmacy. Last time I saw him he told me to take two pills a day. I am not due for a refill, and they are gone.

Maybe I am expecting too much at this time. It would be really fun to get some kites into the air with my grandson before he is just too old to find time to be with me. I only have one living child, so these two might be the only grandchildren that I will have, and I am missing out on so much joy because of my health.

Rhonda:

You will get to a better place. It might take a little time.

Hi Rhonda,

I hope you're feeling better today. Did you get out to have your blood drawn?

Hi Penny
I am sad to say, no I haven't. I will make sure I get to the lab first thing in the morning, before I go to work. I will have my lab slips this time! Thank goodness I can blame it on fog instead of old age.

If I only had a brain...

Well, I did take a multi vitamin, and I do notice a difference. I am thinking more like myself, I am more relaxed, and I am not as tired. I have two more doctors offices that has sent me the initial paperwork in the mail, maybe now is the time to attack all of them.
Good night everyone.

Well, guess who is still waiting to find out about the lab results? I called my doctors office asking for the results, they called back saying that the labs were sent out of state to be processed. Tonight the lab had left a message on my phone, telling me that they need to draw the blood again. That was 14 tubes, and they don't have enough blood to run the tests?
In February with each lab drawn, they gave my platelet count a zero, because the platelets had clumped together before they processed it.
I went to the labs website, leaving a complaint for customer service. I submit it feeling great! Something might get corrected from all of this... instead of getting a message saying my "message has been submitted for review", I got a message "under construction, sorry for the inconvenience". What a joke!

I have had some time to clam down. I can't change it, so I have to accept it. Thanks for allowing me to boil over.

I was just reading Sandi's post, and I have noticed that I can feel like grocery shopping, and by the time I get to the end of the produce, I am darting off to the bathroom. By the time I get through the meat section, I have no energy to continue pushing a cart. Dairy, I am hanging on to the cart so I can make it to the check stand, and I am so thirsty that I can't get enough water, but I still have to get through the pet foods, or my babies will claw my eyes out. Then bag my own groceries? Can't I just call someone to help? By the time I make it home, the food can rot in the car. All I want is to climb into bed, and maybe I will wake before it gets too spoiled. So I have made it a point to have my roommate along, so he can do most of the work. When I need a walker, he lets me hang onto the cart, but when it gets too much to push the cart, he takes over again. By the time we get to the check stand, I am sitting down on the bagging area trying to get enough energy to get to the car, while he bags the groceries. Sometimes I feel so ill that I just sit for a short time, and then wait for him in the car. I am thinking maybe that is all brought on by the lights in the grocery store? I am also noticing the back of my arms has like slight red and white splotches under the skin, and it stops where my arms are protected by my clothing. Could this also be from the lighting? It tends to look like it is gone once my coat covers my arms for a while. Or why I think it could be distance that is causing a lot of pain for me, when I am actually walking under the florescent lights? If the lights can cause rashes, and the rashes stops at where my cloths cover me, how can the lights cause pain where I am covered by clothing? With my roommate bagging groceries, and bringing them into the house, I usually have found enough energy by that time to put the groceries away, and I am not running to hit the pillow. Is that normal for you to feel somewhat better once you are no longer under the florescent lights? It usually takes a few hours for me to get back to my normal level of pain after grocery shopping. I have never associated the lighting to be the issue. It is normal to have florescent lights around so I never even suspected them. Maybe there should be a discussion group called 1001 questions with answers about lupus to regain your sanity. So the “ignorant ones” (as in me) can read up and understand these issues without asking 500,000 questions… Or have I already suggested that before?
Oh the rheumatologist visit was great. He actually talks to me! Maybe I already said that too, I think I need to go back to reading and remember where I am at.

I met my sister at the grocery store tonight. It started to feel like I was being stabbed by several dull needles. I matched my hand against my sisters and it looked almost purple. It felt stiff as I moved my fingers. Now they feel like my left hand has fallen asleep. I am left handed, so I was using my left hand to grab things. I kept my hands inside of my coat as much as I could. I didn't get all of the items that was on my list, all I knew is that I needed to get out of there as fast as possible. I am starting to get frightened. I am afraid of what symptoms I will have next.

I always have problems in the stores with those lights. Lowes, Home Depot, Walmart. I can take 10 minutes then I'm so stiff I can barely move. I also work under flourescents, but turn most of them off and they are not as strong. I really need to get some lamps in my office and keep the flourescents off altogether. What is weird though is that I'm okay in the sun (except for an increase in neuropathy in arms and legs).

Rhonda, I said this before, but I think you need reminded. Symptoms come and go. You might get some scary ones, but that doesn't mean they will last. I'm going though a horrible time right now and I have to also remind myself of that.

I went by my oncologists office, and asked if I could find out what my platelet count was. They put me in a room for an office visit. I"m 192, so I showed him the purpura, and petchiae, and asked him why I had these issues if my count was normal. He actually took the time to talk to me today. He said that Prednisone can cause the issue when your count is normal. He told me to lower the prednisone to 10 mg. I told him the rheumatologist was waiting for lab results, and had mentioned raising the prednisone, and might put me on neurontin. So he told me to continue with the dose I am on until I see the rheumatologist next week, and we will see what he wants to do. That is progress! So how do I know if my count is in range, or if it has dropped again, if I can't trust the visual changes?

Rhonda:

You don't know, but you learn to stop stressing about it. Personally, I haven't had purpura or petechiae due to Prednisone.