Looking for support.

[i love clowns]

My town has no support group. I need to find a place to celebrate triumphs and cry to people to who understand. I have lupus, sjogren's syndrome, raynauds, ibs(yuck)and fibromyalgia. I think i usually do pretty good. But this week a friend died and i think it put me in flare. I have been so upset. I'm hurting bad, running low grade fever and so tired. My friends and family don't understand. I work about 46 hours a week and do what i can at home but i am so tired. I just want to sleep. Thanks for listening and if you know of a good forum or if this is the place to go let me know. Oh recently found out that my platelets are low. Don't know what that means.

[been there]

low platelets (Idiothrombocytopenia purpura) is a symptom of Lupus. I had ITP for 8 years before my Lupus diagnosis. Steroids is usually the first treatment for it. I am also looking for a support group. I know how you feel about being tired all the time. I could sleep constantly if my schedule allowed it, but unfortunately it doesn't. Hope you feel better soon!

[i love clowns]

For some reason this said i was from Arkansas. I live in Tennessee. Been There are you close to me? Thanks for answering me. I try to have a good attitude but when you "look sick" people even doctors don't get it.

[been there]

I live in NC, but used to live in Decherd, TN. It is a beautiful state! I hear all the time "you don't look sick", and I'm glad of that because I try to protect my children. They are too young to understand why mommy is soooo tired. I read on another post of yours, that you take plaquenil? I haven't started that yet because I am scared of the side effects. Do you have any problems with it? I am willing to try anything that will help my fatigue.

[i love clowns]

It really did help the fatigue and i know i would be alot worse without it. My kids are 23 and 20 so they have seen me go through it. I think i am in a flare now. A friend died last week and it has been hard on me. I went to the doc today and have to wear this heart monitor thing for 24 hours. But the chest pain may just be anxiety not know what new thing lupus will bring to me. I am also on synthroid, lyrica, allegra,lunesta(because even if you are fatigued doesn't mean you can sleep), heartburn meds. I also have tramadol for pain(i only take it if i have to) and imitrex for migraines, hydroxyine for itching. Sometimes i feel so sad i am only 43 and my mind feels younger than my body and that is frustrating.

[been there]

I also had some chest pain about a month ago, and my rheumatologist told me it was pluerisy(sp?), definitely Lupus related. I take Mobic for it to help with the inflammation. I take vicodin for pain, prozac for anxiety (that's brought on by the pain), insulin, Imitrex, and am about to start a beta-blocker for high blood pressure. I am only 35, so I know how you feel about the mind feeling younger than the body.

[i love clowns]

I was taking effexor but came off of it. She said i might have to start it again. That even though emotionally i think i am okay i may be interlizing it. Oh well. How would the know it would be pluerisy? Is there a test?

[been there]

My rheumatologist told me that pluerisy is a diagnosis of exclusion. Chest x-ray was fine, and based on his physical exam and my symptoms, he was diagnosing me with pluerisy. Every time I see him and tell him of new symptoms, he just says "yes, that's to be expected with Lupus".

[i love clowns]

I quit going to mine cause she didn't give a care about me. I love my husband and we have a fairly empty nest except for 3 dogs and a cat. He doesn't understand why i don't have the endurance i used to have. Thanks for writing back to me.

[been there]

You're welcome! It's comforting to me to 'talk' to someone who understands what I go through. My husband says he understands, but he couldn't ever really know. I'm sorry about your rheumy. I had heard horror stories about them until I had to find one. I was soooo lucky to have my doctor. He is amazing. He's an older man and I'm afraid he's going to retire soon. Then I don't know what I'll do. I hope you get to feeling better soon!!!!!!!

[Laura]

Sorry to cut in here, but I have been taking plaquenil for a long time and I have had no problems with it - don't be scared to take it - it is the other medications that caused issues - the chemo pills my body rejected completely and the celcept was way too pricey and caused red welts all over my face. I am now taking methotrexate, which has been AMAZING for my joints and skin, but the downside is I get a fever 1-2 days a week which I have to up my prednisone to bring them down - they used to go up to 104, now the highest is 101. Hope this helps...