Frustrated and Fatigued

[barefut]

I've been in a flare since I had my gallbladder removed a month and a half ago.

I've never taken anything except NSAIDS for my lupus symptoms. I'm thinking of asking my doc for the next step up.

My major symptoms are muscle pain/weakness and fatigue. I'm sick of trying to function like this. I'm in a bad mood all the time because I get so frustrated that I can't get anything done, and as soon as I DO get something done, it's UN done within the hour (kids)

I need some pain relief so I can just get through a day without wanting to collapse 1/2 way through. I envy all the people who have the luxery of collapsing whenever they feel like it. For me, there's no 'worser' feeling than wanting to collapse and knowing it's only 2pm and you're not going to be able to put head to pillow until at least 10:30pm. It's pure torture.

I'm a stay at home mom to two boys and I babysit for another 4 days a week. I don't know how any of you, especially those of you with kids, can have a job outside the home!!! There's no way I could do it.

I know everybody is different but I'm wondering what people with similar symptoms to mine FIRST took for their pain relief.

I've read that some of you have taken prednisone, in varying dosages, for just short periods of time to relieve inflammation. Can anyone elaborate on their experience?

How effective was it for pain relief?

How long did it last?

Did symptoms come back right away after discontinuing it?

What were any side effects? (At 195, Lord knows I can't afford any weight gain!!!)

Any insight would be very much appreciated.

Thank You.

[kurlykim]

HI Barfut,
I am learing now so much from this site and I am sure someone with more information will post shortly. I have pain, weakness, fatigue and tiredness all the time. I am working on my mood swings. Predisone has helped me to function. At one point about three years ago I felt like I froze. I have taken ibprofin for a long time and the highest dose of pred has been for me 20 mg. I also am a stay home mom now for about 6 months and find it hard at time to keep up.I (((hugs))) Hope you feel well soon.

[Clare.T]

Sorry barefut but I think you need to take your lupus seriously and start getting treated for the disease with disease modifying medications starting with antimalarials.

If you don't like your doctor look for another; if there is no choice then deal with the one you don't like. GP's are usually not well enough informed & if the one who diagnosed you hasn't ever suggested a referral to a rheumy or more effective medications that's not good.

Prednisone is invaluable at times and essential for some people. It will reduce inflammation but every effort is made these days to reduce its use to the minimum because of the serious long term side effects. It might be that a short term course would help you until other meds kick in.

Of course you need a thorough lupus work up if you haven't had one for some time. The blood in urine needs checking too.

I know you hate doctors and all that. If he makes you feel you are wasting his time he doesn't deserve his licence. Don't let his poor attitude risk ruining your health & life.

We can only advise - it's up to you to take the plunge and get the best care available. Ibuprofen isn't even the best choice of NSAID for lupus and itself can have serious side effects, as you have already discovered.

Take good care of yourself before you get in a worse state and have very reduced choices. OK ? :)

Clare

[dmb 123]

Hi Barefut, Please go and see doctor about medication. I have only recently been diagnosed with Lupus and was terrified of taking prednisolone...even a little bit helps. I tried to ignore the symptoms and push on with life, even telling myself I was being lazy, although I knew I had SLE. Anyhow, I'm still in a flare, but the prednisiolone is keeping me ticking along and is helping with the tiredness. I go to sleep when I want to , not when I have to now. I will be tapering off soon as I am also taking other meds, Plaquenil and Methotrexate which should give me a much better quality of life.

Please be kind to yourself and get some medical help. I tried ignoring it and ended up staying in hospital, so learn from my mistake.

Take care, keep us informed, love Donna xxx ((((hugs))))

[barefut]

I do have a new doc. (GP) and I did have a recent lupus panel done right before my gallbladder surgery (April 27th) The only result from that bloodwork that they discussed with me was a positive ANA.

I have an appointment tomorrow. Wish I could take you with me Clare!