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Discussion Starter #1
hi guys
i am in an awful lot of pain last frw days and today it is unbearable my right knee is like a football so swollen and pain is driving me crazy my left elbow is the same.i am in bed waiting for my 7 year old daughter to wake up thank god there is no school today maybe she will lay in bed with me and watch t.v.i cannot get out of bed i have taken all i can in the pain department.my doctor says all i can do is rest but that does'nt help when i have a little girl to take off.
i am sorry for for complaining but i know you guys will understand.hope you have a good day
jackie
 

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Hi Jaki,

I'm afraid I don't have any specific advice for your pain. I think that the doc really is the only one who can help you there.

I had this problem (not in the knee) last year and I couldn't walk becasue of the pain. When I called the rheumy and said I couldn't walk because of the pain she sent me down to my GP with strict instructions of what to give me which, in my case, turned out to be a course of prednisolone.

I don't know what meds you are already on so it's difficult to say what options there are but there has to be something that would at least reduce the pain to the point where you can walk and do the minimum you have to do. The difficult part is always getting through to your doc just how bad it is.

Sorry I can't help more,
:hug:
Katharine
 

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Hi Jaki,

I'm sorry to hear you are in so much pain.
There was a time last year when my ankles and knees did the same thing. I could hardly walk or bend my knees from the swelling.

My doctor gave me celebrex and it helped right away.
Maybe doing what Katharine did, going to see another doctor, is what you need to do.

In this case if you don't have a GP,, I would call my rhuemy and let him know I was going to the emergency room. This way he/she will know the imporants and urgency of you relieving your pain and swollen joints.. Maybe then he/she will do something more in the future when you call.

Good Luck,,
Take care of yourself
 

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Hi Jaki,

I am sorry to hear you are suffering so..I hope as Katherine said, that you can make your dr. realize that you need help in functioning and that your provided with some meds, to get you through this flare..Hang in there sweetie! I will be thinking of you and your daughter.

Love,
Sandy
 

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Discussion Starter #5
thanks for the advice guys.i was in so much pain i just did'nt know what to.i only lasted another hour after posting on wed and i could'nt last any longer i called my sister and she took ciara i had really high temp and my sister called my husband john to come home.he was cross that i had'nt called earlier i have lupus 7 years now and i have cried with pain a few times but on wednesday i was screaming and i was very scared john called my rheumy and she wanted to admit me but her hospital is 100 miles away there is no rheumy where i live she called my gp and told him what to do.he came to the house and gave me a shot of morphine he waited and had a cuppa with john and nothing changed so he gave me 100mg of pethadine (i've never had that before).i eventually fell asleep Thank God.Now i am still in bed on 100mg of deltacortril and oxycontin and something to help me sleep.RELIEF AT LAST i still can't walk but hopefully in a few days things will improve.
I don't know if any of you feel like this but when i am sick i don't want to call anyone i feel like i am putting people out.My family try to understand but they really don't get it.I am so glad i have you guys i always feel alone and isolated and at the moment i am really down.I pray for a cure for all of us.thanks again guys.sorry if i went on a bit.
 

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(((((((Jaki)))))))

I'm really sorry to hear how much pain you are in. Im glad the Rheumy's intervention helped somewhat but it still sounds very bad:sad:

The only time I suffered pain at the level you describe was pre-diagnosis days. Thank God I have never had pain as severe as that since. Mostly my pain is managed well enough with painkiller tablets.

I sure hope this flare passes soon for you. What regular medications are you on Jackie? Maybe you need something else at this stage to help control things for you?

Take good care and gentle hugs to you
Joan:rose:
 

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hi

i have the same problem in both my knees..whenever i walk it starts to swell and tighten really bad...it feels like i have friction in my knees with the bones...my elbows are always swelling now and they wont straighten out!!!
 

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Discussion Starter #8
hi joan
i'm on CELLCEPT,PLAQUENIL,LYRICA,AMITRIPTYLINE,DELTACORTRIL,LUSTRAL,DIOVAN,PLAVIX,
and pain relief when needed.I used to get great relief from AULIN but now it's off the market.I have had a great year last year flares were small and passed very quickly.I was very seldom confined to bed.This time i think lupus wants to remind me what it is all about.My rheumy said because i am on the highest dose of CELLCEPT the next step is going to HAROLDS CROSS for aggressive chemotherapy.Have you heard of this Joan?I have been on these meds for 3 years now doses adjusted now and then before that i had METHOTREXATE i did'nt like that at all i felt really ill with it and lost my hair.Do you know anything about what they do at Harolds Cross for lupus?I was in so much pain i did'nt take in what rheumy told me but i'll see her again soon so i can get all the facts.I have to go to TRALEE for treatment Joan there is no-one in Clare or Limerick for me.Thanks for you support Joan it really means alot.:) I don't know how to send you a hug but i am wishing you lots.
 

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hi Ceecee
it's horrible what you are going through at your age.Hopefully both of us will be up dancing soon:) i love to dance.what meds are you on?You take care and hopefully we can talk soon.:)
 

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Jaki,:hug:
I am sorry that you went through so much pain. I cannot even imagine how difficult that is when you have your daughter to take care of. You really must have a high level of pain tolerance-I am a big fat baby:cry2:
I hope everything works out so you can be pain free. If for some reason this happens again please don't wait so long-you don't need to suffer and your family and friends do not want you to suffer.:)



Hugs,
Becca
 

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Hi Jackie

I hadnt heard of this specialist unit before but I did a bit of searching and I think what your Rheumy might mean is a referral to a specialist Rheumatology Unit which is in Our Ladys Hospice, Harolds Cross. Dont panic about the hospice bit! Its simply sited there and is linked to St. Vincents Hospital in Dublin. Perhaps Tralee Hospital and St. Vincents have some kind of referral arrangement?

Of course it might not be this unit and you would need to check with your rheumy exactly what she is intending. Anyway I found a link which explains about the unit and what it does. It specialises in treating various conditions including Lupus and is a multi-disciplinary unit.

If you are no longer responding to the standard medications it seems like your Rheumy is considering some aggressive interventions - perhaps IV Cyclophosphamide? I see from the link below that they also administer Rituximab. You probably have heard of this drug? A number of our members here have had infusions when other medications were no longer working. Its designed to specifically target and wipe out B Cells in the body. Although its not officially approved for Lupus it is used off label. Some of our members have had great success with it. In any event you need to have a good talk with your Rheumy to find out what kind of treatment she is thinking of right now.

Here is the link to the Unit.

http://www.olh.ie/Departments/RheumatologyRehabilitationUnit/

Do keep in touch Jackie and let us know how you are and what is being proposed. I sure hope your pain levels ease up for you :hugbetter: :hugbetter:

Thinking of you and keeping everything crossed for a good outcome. By the way, did you read my reply to your 'Looking for an Irish Lupus Doc' post? There are a couple of links there which might help in your search for a new Rheumy. Let me know if you got it and if not I will link it to you by Private Message.

Hang in there. We are all thinking of you.
Lots of love
Joan:rose:
 

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Wow! I really hope you feel better, SOON!!:fingers:
I know that before official diagnosis almost 3 yrs ago I was in that kind of pain I actually asked my husband to break my finger to divert the pain:bashhead:
Anyway since being on the prednisone and now the imuran I feel a little better but I have really bad leg pain not sure what thats about:scratch:
Anyway my doctor(rheumy) makes me take a aspirin a day for additional inflamation control, I don't see a major difference esp since its been really cold here, I kind of have to use my pain meds to get relief lately.:sigh:
I hope you get the relief you need soon and make sure to get the rest you need when you can sometimes that alone is extremely helpful and if you can a long hot bubble bath can offer body comfort not to mention the mind and soul.:goodvibes:
Take care and feel better soon!!:there:
 
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