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Hi, my name is Tamara
I have had Lupus for three years and am still trying to learn how to cope with it. I have 2 kids (girls) and a stepdaughter. I wonder if anyone has any ideas for me?? I am on plaquenil, 3 prescription painkillers and an antidepressent, but I still have soo much trouble a lot of the time. I have a lot of brainfog and severe fatigue. Along with the chronic pain. I am hardly able to keep up with my kids or house. In fact I get a lot of help from my husband and mom. I want to start living again. All my doctor wants to do is keep giving more pain killers or muscle relaxers. Help?
 

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Hi Tamara,

Welcome to "The Lupus Site." It is nice to meet you.

Do you see a rheumatologist that specializes in lupus? Not all rheumatologist know about lupus. I am sorry to read that you are in so much pain.:hug:

Lupus fatigue is one of the biggest symptom to deal with. I have learned to listen to my body. If I want to do something that I know that will take a lot of energy I try to rest up. Having children that you have to keep up with must be hard.

Have you talked to your doctor about different meds you could take?
NSAIDS http://www.uklupus.co.uk/nsaid.html

Corticosteroids http://www.uklupus.co.uk/cortico.html

It sounds that your doctor isn't helping control your lupus. Sometimes it takes going threw more than one doctor before we find the right fit with one.

I hope you find some relief soon.

Take care,
Lyn

 

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Er, rather than keep upping the analgesia etc think you need meds that get the symptoms more under control, more of the time. I also wonder if you have seen a decent Rheumy..one who specialises in Auto Immune disease.. you definitely shouldn't be putting up with feeling so bad with no relief in sight. Think it would be good to have a proper review of your care and meds and perhaps by a different health team! There are lots of mixture of meds that can be tried, I wonder how many you have been offered to try.. the medics need to work with you to try and find what helps you, and for the longer term.... please consider seeing somebody else if that is not happening, Lupus is difficult to understand and many practitioners don't know what they are doing :( Take care and be sure in your mind that you deserve the best and you are having to live inside your body, Doctors are not.
Claire X
 

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Hello T and welcome to the board.

I take Provigil for fatigue at 200mg daily and I agree you should talk more with your doctor about controlling your meds.

Personally I happen to love the Phentanyl patch. It delivers pain meds trans dermally and you need to change it every 3 days. It really works well and Percocet for break through pain.

I hope to get to know you better. Join us in the chat room sometime.
 

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Hi Tamara
Ive had L 3 years just over and found it hard to cope my children are all grown up. How old are your girls? Try the phentynol patches they come in different strenghs also heat packs helps me, have you tried them? there are various meds out there its just getting the combination right 4 u. You dont want to be zonked out half the time. Hope you get sorted soon
dixy
 

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Hi Tamara,

Welcome to the forum. I hope the information you find here will be useful to you.

Pain killers will make you more comfortable but will do nothing to change the course of the disease. Plaquenil is great but obviously not enough for you. There are other medications that could be added to the Plaquenil that might help get the Lupus more in control. The following site has an overview of the medications used:

http://www.uklupus.co.uk/meds.html

Not all doctors know enough about Lupus to give effective treatment. You may need to seek out another rheumatologist used to dealing with Lupus to get the appropriate care.

Take care,
Lazylegs
 
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