View Full Version : Update!
11-13-2009, 02:32 PM
I saw my rheumies PA yesterday. She said I have a LOT of inflammation in my body. which I pretty much knew, u know the PAIN! anyway, she looked at all my joints, did chest x rays, ordered blood and urine work up and an echocardiogram. Since I have been having chest and rib pain again she wants to make sure its pluerisy and not pericarditis. She also raised my prednisone back up to 20mg. she wants me to do a slower taper this time back to 10 in a month. Hopefully that will help the inflammation go down and thereby relieve the PAIN! I have been struggling to keep a normal sleep schedule, but am working on it. I am so fatigued most of the time. absolutley no ENERGY at all. Really sucks! It snowing here today and I am not feeling very well. I thought I was going to have a good day, because I had minimal pain this morning but now I am starting to hurt pretty bad again so, so much for wishful thinking! LOL I see my primary dr. on Weds. so I think he will probably give me tordol shot to help. I just want to have more pain free days U know!
11-13-2009, 06:30 PM
I am sorry to hear that you are feeling so yucky today. It sounds like the PA is giving you the care and concern you deserve and I am glad to hear that. Rest up, relax and get some sleep. Hopefully tomorrow you will have a better day.
11-14-2009, 05:36 AM
Me too! I really like my rheumys PA she is really nice and caring too. Also very thorough. Here it is 4:36 am again and I can't sleep. I really hate being in soooo much PAIN! I hope you are doing well, or at least better than you have been. Take care!
11-14-2009, 08:39 AM
Wow! It sounds like you're really going through a nasty flare. I'm so glad the PA is listening to you and giving you thorough exams and follow up care. I don't have any sleep secrets except a bit of Nyquil. It does dry me out a bit. Plus, if I have to get up early for work, I can only take 1/2 dose or I'm groggy in the morning. It's the one thing that I can take to deal with DH's thrashing about.
I hope you get some relief soon!
11-15-2009, 01:58 AM
yeah this has been a really nasty flare, but I am not in a wheel chair like I have been in the past. 1 1/2 yrs in a wheel chair. this flare started in may and still going strong unfortunately! I can't take nyquil it keeps me awake! so does benadryl! I wish I could work! My Dr. put me on Social Security 9yrs ago. They won't let me work and it sucks, because I don't have anything to do, not that I can right now! But you know what I mean! anyway thanks for all the support!
11-15-2009, 01:13 PM
hi smokerscat, how are you feeling today? I hope the flare is giving you a break, and that you can sleep. I have trouble sleeping when on prednisone. So sorry to hear you were in a wheelchair awhile back. What caused you to have to go into one,. and how long were you there. So glad you are out now.
11-15-2009, 03:50 PM
Hi, smokerscat, I am sorry to hear you are in so much pain. I hope the flare eases up pretty soon. I hope you have a good support system to get you through the worst of it.
I honestly did not realize that lupus was so incredibly painful. I am learning a lot on here. Wishing you better days. ea
11-15-2009, 05:27 PM
hi smokerscat i am sorry you are having bad flare i am glad though you are getting some support i what it is like to be in wheelchair i was for 6months last year now use walking stick and frame phyllis isright if you are on prednisone it is difficult to sleep i only average a couple of hours a night if i am lucky i found since i do not work and are at home my rheumi said to take naps during the day when i feel tired the fatigue is so terrible i tried everything to drinking warm milk staying up later not drinking anything with caffiene in the end nothing worked and rheumi was worried so he prescribe me valium and told me to take only as needed it was the only thing that helped for awhile but i am reluctant to keep on taking so i am just trying to perservere. i am in bad flare at the moment so the pain also prevents sleeping i hope you are feeling better soon hugs kim l
11-15-2009, 09:19 PM
what caused me to go into the wheel chair was RA or so they thought! I had horrible hip pain that made it so I couldn't walk at all! It turns out in SLE... I have a lot of inflammation in my body. I hurt all over and really bad! What started this flare is I was on Remicade for 8 or 9 yrs and it suddenly burned out... It just stopped working! So after it quit they tried Enbrel and did a bunch of test and x rays. They found that I had SLE instead of RA. The enbrel we found out I was allergic to. so they stopped that. Put me on plaquinil and prednisone. So I am still waiting for things to kick in. The Dr. thinks that what makes this flare so bad is the remicade stopped working. That gave my body a overload of symptoms and here I sit! oh goody!! This sleep thing is really disturbing to me! I really just want to sleep at night and not during the day! SO FRUSTRATING!!
Thanks For all your support and ideas.
11-15-2009, 09:23 PM
It really is difficult! I have tried everything too! Yeah I really hate the fatigue TIRED ALL THE TIME.... REALLY SUCKS!! I hope u start feeling better soon too!
11-15-2009, 09:42 PM
I spent last summer in a wheelchair, while traveling, too. The orthopedic surgeon found that I had Avascular necrosis in my knee, which means that the bone is dying. He ordered NO weight bearing two days before we were to fly out of San Antonio. We had to arrange to rent wheelchairs wherever we went.
We spent a long weekend at a college campus in New Hampshire for a teacher's conference, with Jeff pushing me around. Then, we spent a week in NYC with our daughter who lives in Greenwich Village. Both of them had a blast pushing me all over Manhattan. They even put me on a subway in that chair, and pushed me all over Central Park and the Metropolitan Art Museum.
The next part of our summer, the AF sent Jeff to Honolulu for 6 days. While he and his team worked at Hickam AFB, we wives enjoyed Waikiki. One of the other wives would push me, and we shopped 'til she dropped. Jeff took a great picture of me sitting in the chair on a pier with Diamond Head in the back ground.
The last stop was Yakota AFB, just outside of Tokyo. You would not believe how much fun we had in Tokyo, despite the chair! The people there are so polite and helpful, especially to a handicapped person. We figured out the trains, saw all the sights, ate at hole-in-the-wall sushi bars and even experienced a real Japanese karaoke bar.
I had to use a rolling walker all last year at school, and I had arthroscopic surgery on that knee over the winter break. The knee is still extremely painful, so I suspect that there is still some AVN in it. It tends to affect other joints, too, so it could be the reason that my other knee and hips hurt so badly.
I'm an active person, and I love to travel and have fun, so even when my health slows me down, Jeff and I usually figure out a way for me to do what I want to do. I just may do it a little slower than I would like!
11-16-2009, 03:56 AM
Wow you have been all over the world! How exciting!! Sorry about the avn! I'm glad you have such a positive outlook. I used to be an active person, but I just can't seem to do anything anymore. If it's not pain and swelling, it's the FATIGUE that gets me down. It just seems like it's on thing after another after another. I want to have more good days then BAD ones. I hope that is coming soon!!! I wish I could be active again!
11-16-2009, 10:23 AM
Do you take MTX and/or Plaquenil? My fatigue has improved a great deal since I've been on the right combination of MTX, Plaquenil and mega-doses of vitamin D.
I now have lots of energy, but the knees and hips won't cooperate!
I hope that your rheumy and PA can find the right combination for you.
11-16-2009, 10:10 PM
I was on mtx but my hubby and I want to have a baby, so they took me off mtx 2 1/2 yrs ago. I really don't want to give up on having a baby, so I really don't want to back on mtx. I am on plaquinil right now. I started a little over 2 months ago. I take a multi vitamin evry day and vitamin d and caltrate. I guess I am just playing the waiting game! waiting for my meds to kick in. It's just so frustrating! Last night I tried to sleep and my feet felt like they were on FIRE again. So I got up and put ice bags on them. They were red, HOT and very swollen. After about 2 hrs of icing them, they finally cooled off and the swelling went down. I didn't get to sleep until after 7am! THIS SUCKS! Once I got to sleep I slept like a rock! I just need to be able to sleep at NIGHT like that!
11-17-2009, 10:38 AM
You and I have the opposite problems with our feet at night. My feet are ice cold for an hour or two after I get to bed. The rest of my body is warm and cozy, but my feet are like icebergs.
11-17-2009, 08:30 PM
What I wouldn't give to go back to having cold feet! Sorry yours are so cold! I would welcome the cold right now compared to my inferno feet.
11-27-2009, 07:46 PM
Well day before Thanksgiving my rheumys office called me. Blood work came back! My vitamin d levels are so low only 3, I guess normal is around 30 so 3 is really really low. My calcium is also extremely low. So they faxed a prescription to my pharmacy for 50,000 IU of vitamin d. take 1 every week for 3 mo. and I am to take 1,500 IU of Calcium a day. So I guess that explains the EXTREME FATIGUE I have been dealing with.... YAY!!!!! Hopefully I will start feeling a difference soon and start feeling better!!!! I also developed a rash on my nose and cheeks it kind of looks like a rug burn, but I know it's not! obviously!!! I had a wonderful Thanksgiving with my husband at my folks place. It was nice to visit them!!! The Dr. also put me on Ambien CR for my sleep issues, and Nexium for the acid reflux. I have to schedule the echocardiogram on Monday... I will let everyone know all the results. Take care all!
11-27-2009, 08:03 PM
I'm taking the same dosage of vitamin D once a week. I had dropped from 46 to 29 on my vitamin D level, so the rheumy caught it before it could get worse. She also told me to go beach walking and spend a little time in the sun each day if possible.
It has seemed to help me with the fatigue, along with the MTX and plaquenil.
Be sure to read the info on your vitamin D prescription. It says to not take it at the same time as the calcium - something about interfering with absorption. On the day that I take the D, I take my calcium later in the day.
11-28-2009, 03:06 AM
Thanks for the advice! I sure hope it works soon... How long have you been taking it? How long did it take to notice a difference? Hope you are doing better!
11-28-2009, 03:11 PM
I've been on it for five weeks now. I noticed that I felt a bit more energetic within a week of starting it.
My DH found some info that said that taking plaquenil may be related to low levels of vitamin D. The timing would be right for me. I was at 46 last spring, when I started the plaquenil, and it dropped to 29 by the end of August.
Feel better soon!
11-28-2009, 06:01 PM
Smokerscat..have they tried giving you any antidepressant drugs...for sleep disturbance...it sometimes helps.
11-29-2009, 05:11 AM
yes they have, several of them in fact. nothing seems to work. antidepressants change my personality, which is not in a good way. I ha more probs. on them then now! I am trying ambien cr but so far not sleeping yet. I took it at 11pm and it's 4:10 am and still not tired. SO FRUSTRATING!!!ugh!
11-29-2009, 05:44 AM
Oh SC i soooooooo understand what you are going through,im the same.Just when i begin to sleep it stops for weeks at a time.Such a horrible thing when the world around you is asleep yet you are so tired yet your brain just doesnt switch off.Hang in there...hopefully soon you will sleep soon.It does come round once in a while and i so hope you get help soon.
Lots of love
11-29-2009, 10:46 AM
Antidepressants and I don't get along well either. However, I'm told we just haven't found the right one yet, but I'm too scared of them to try anymore.
I'm so sorry you're part of the insomnia club too. ((((Hugs))))