Lupus pain

[Annjanice]

Hi , I am Ann . I was recently diagnosed with Lupus after years of pain in my feet and feeling ill most times. I have started medication but now I have swollen feet ,fluid retention and my feet feel heavy. Has anyone experience this ?

[Chantev]

Hi Ann so sorry to hear that you are having a bad time with your legs. I had a similar experience when I was newly diagnosed with Lupus, some 25 years ago. I was prescribed the usual medication and I found that that my legs were swollen and suffered from fluid retention. I did some research and found that it was a side effect of the tablets Nifedipine which was prescribed as I had very poor circulation assosciated with Raynaud. So I had a chat with my doctor and decided to address it with exercises. Started with gentle yoga and walking and building up from there. Exercise has become part of my regime and was weaned off Nifedipine. The only drug that I have is Hydrochloroquine.

Bear in mind that we are all different and our bodies react to drugs and illnesses in their ways. I am not advocating that you should stop your medication but merely relating my experience to you. Regular exercise gave me my body back and I feel so much better. I have withdrawal symptoms when I do not do my exercises ah ah!

Hope you can reevaluate your situation and get moving!

Best wishes

[Annjanice in reply to Chantev]

Hi Chantive thanks for the information. I will try at the exercising again. I was having dizziness and very bad chest pains while doing it and had to stop.

[creaky]

Hi Anne, I get a lot of pain and swelling in my feet, it can make getting comfortable shoes a right pain!

I have it best to walk every day in spite of the pain, but to put your feet up when ever you are sitting. I get two different sorts of foot pain, pain and swelling in the small joints in my feet and burning nerve pain. I take time antinflammatory drug load for the joint pain and Pregabalin for the nerve pain.

Hope this helps a bit 💐

[Annjanice in reply to creaky]

Thanks so much. I am trying my best to cope and learn.

[misty14]

Hi annjanice

Sorry to read you have just been diagnosed with lupus and are getting swollen feet problems!. Can I ask what medication are you on?. Sometimes that can be a side effect. I'm interested you mention chest pain. Heart problems can cause swollen feet and ankles so i' m wondering if you've had this investigated?. I too have had chest pain for years which can be very painful!. I've been tested and diagnosed with inflammation of heart and lung lining and prescribed colchicine , a strong anti inflammatory they give for gout!. It has been so helpful for symptoms , you just have to watch diorrhea as a possible side effect but it's revolutionised me!.

Lastly welcome to the forum, hope you like being here and chatting to people who understand!. You say I think you've been recently diagnosed. Had you been ill long time?. It will take a while to come to terms with so be kind to yourself and I hope you feel better soon. X

[Annjanice in reply to misty14]

Thanks misty14. I am really happy to be here. I have been ill for many years but the Dr could not find out why. I changed Dr and the new Dr found it is SLE.

[misty14 in reply to Annjanice]

Hi annjanice

Hope you are feeling better now any treatment has had time to start working!. I should have also said I too get swollen feet because of the inflammation!. Have had to get rid of lots of shoes!. I bet your relieved just to have an answer as you've been ill a long time!. Keep posting. X