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Discussion Starter · #1 ·
I ended up in the hospital agian for 2 weeks due to issues related to my knee pain. I was put on Lyrica, but when I got to a higher dose, I experiened significant swelling in my feet and legs. So, they put me in the hospital to try and get my medications under control and give my husband some respite care. They took me off the Lyrica and tried Gabapentin. It started out fine, but again when it got to a higher does, the swelling reoccured and I was taking a diurectic at the same time! So, they sent me home that way and I'll just have to live with it. The swollen feet are much easier to bear then the nerve pain in my knees! However, I'm not sure this gives my husband a break because I still can't walk; only a short ways with the walker. We're going to see if we can increase home care to help him out. Not much else we can do.

I also had an appointment with my rheumy yesterday and he is SO good! I am so lucky to have him. He was asking me questions about my knees and he was describing exactly what was happening to me. He said "does it feel like bands around your knee?" And I said wow; I just told my husband yesterday that "it feels like I was wearing knee pads." I was floored. He actually believed my problems with my knees and understood what was going on. Locally (the hospital nurses and doctors) think I'm either a drug addict or a hypochondriac! It was such a relief. However, I think I have a long road ahead of me. He said it can happen when you increase or decrease prednisone. Mine was increased from 8 mg to 80mg when I had the pericarditis. I went down to 40 mg and the knee pain started. They had me back up to 60 mg, but are decreasing it again. I am at 45 mg. So, he wants me to reduce it ASAp; 5 mg a week. We'll see what happens. When I decreased my prednisone before (35 mg to 8 mg) I could only decrease it by 1 mg a month or I would have inflammation issues. So, I am keeping my fingers crossed. And I hope my knees heal quickly.

I was told by work that my best option is to apply for medical retirement. I sent him the forms to complete, but I wasn't sure what he would think about it because if I go in remission, I could probably work as I have a desk job. So, I asked him about it and he said "you will never work again". He was so strong about it, it shocked me. I have had Lupus for 2 1/2 years and have not been in remission yet, so logically it looks like I may never be able to work, but in my head, I always hoped I would go back to work. So, I guess that is a good thing and a bad thing as I did love my job and was the bread winner of the family. I'll lose about $25,000 a year. So, my husband will have to find a better job or we'll just have to readjust.

I also saw my Respirologist (Pulumonolgist in the US I think) on Tuesday. He confirmed the damage in my lungs from the blood clots and chest tube that I had before I was diagnosed with Lupus. The damage is permanent, but it shouldn't get worse unless I have another trauma in my lung. However, the pain from the nerve endings will not go away and I'll have chronic pain forever. He is going to ask my family doctor to refer me to the pain clinic. There is a long waiting list, but I heard it is worth the wait.

I guess that's enough for now LOL. I hope everyone is have a great day!

Nutty
 

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Hi Nutty,

Sorry to hear you are still having so many problems. I hope you don't have any problems as you decrease your Prednisone dosage.

It is amazing how much less you spend when you are not working. In my case I was saving on gas, eating out, clothing, taxes, and other little things. Without trying too hard we have managed. Hopefully it will be the same for you.

Take care,
Lazylegs
 

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knee pain

Hello - I don't post often because I am not very sure of myself, and still learning and relearning when the doctors don't get it right the first time.I get terrible knee pain and now that I think about it, it is usually when increasing and decreasing steroids.My doctor prescribes percocet and its the only thing I've found that helps.I still have to be careful getting up and down because of weakness. Just thought I would share. Zay
 

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((((Nutty)))

What a time you and your husband have been going threw.:hug:

It is great you have such a wonderful rhuemy. Hang onto him.

I am glad that you are going to try to get more home care. I have that for our handicapped daughter. They are wonderful with helping with her.:)

You have been having such a rough time here lately. I hope things will soon turn around for you. Please take care I have been wondering how you were doing.

:flowery:
Lyn
 

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Discussion Starter · #5 ·
Thanks Lazylegs, Zay and Lyn for your support.

When I was in the hospital my biggest complaint was that I missed my forums! They help me make it through the day. I frequent this forum and a music forum. Music is my escape (guitar, composing, recording, etc.). This sounds like a good idea for a new thread (your escape).

Thanks again.

Nutty
 

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Discussion Starter · #6 ·
Wish me luck. I'm off to the ER again. If I disappear for a while, that's where I am.

I reduced the gabapentin myself by 100 mg to see if the swelling would go down in my feet. It hasn't; it's gotten worse. Plus the pain increase was horrible. So, the gabapentin is working for the knee pain, but I can't handle the side effects.

I don't know what they can do. I called the Rheumy, but he didn't phone back. :sad:

Nutty
 

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First I was reading, thank goodness you were home, now are you going back. I hope that you are going to be ok and that they can regulate the meds to work with your system. I will keep you in my prayers and hope for your fast return.

 

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(((Nutty))))

I hope your rhumey called you back.
Sending soft, gentle hugs your way.:hug::hug:

Let us know how you came out.

Lyn
 

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Dear Nutty, I don't know what to say, except I hope you find relief soon. I understand all too well about nerve pain. Definitely keep your appointment with the pain clinic, no matter how long it takes to get in. You are definitely fortunate to have a good rheumatologist who listens and who believes you. It holds out hope for better things in the future.

I hope your husband can find some way to work off stress and get respite. I know he doesn't feel you are a burden. Love doesn't see things that way. But obviously he must find your situation physically and emotionally stressful. Sending both of you good thoughts and prayers.

Hugs,
Sunny
 

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Discussion Starter · #10 ·
Thank you Helloos, Lyn and Sunny. Your support is deeply appreciated. They did not keep me in though. Instead, they put me on bed rest until the swelling goes away (just 2 or 3 days hopefully). I can then wear my support stockings. They adjusted my other medications as well, so hopefully it will be under control soon. Then, we can hope for it to go away completely!

Thanks again everyone.

Nutty
 
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