Lupus pain

Hi @twinkie23, I'd like to invite @sirgalahad, @debbybundy, @kuma and @covidstinks2023 to this discussion as they have all discussed a form of lupus and how they have dealt or are dealing with their pain.

@twinkie23, you have been dealing with a lot of pain and it sounds like it is really draining you both physically and mentally. Is this a recent down turn or has it been a slow process that you are trying to break out of?

I’ve dealt with pain throughout my illness but it seems to be less tolerable lately. I don’t know that the pain is increasing or the frequency is increasing but I don’t seem to be able to deal with it as well as I used to. My Rheumatologist told me not to be afraid to treat the pain. But, by treating the pain by taking meds, it seems to me that I’m accepting it instead of trying to fight or ignore the pain. Does that make sense?

@twinkie23 I was diagnosed with SLE in 1988. It must be a mild case, as I have not had to do meds for it, but there are other co-morbidities present. Like blood cancer, end stage renal disease [meaning daily dialysis for me], and fibromyalgia.

Gentle exercise has worked for me in the past. Journaling helps get me out of my head when it becomes overwhelming. I even written letters to my illnesses at times! Surprising what comes out.

Don't be afraid to take care of yourself, whatever form that might take. Having lupus is not an easy path.
Ginger

God Bless You! You can share your aches & pains...I care. The jury is still out as to whether I have systemic lupus. I have had fibromyalgia for 28 years, I have both thyroid diseases that pushes arthritis and I have osteoarthritis almost all over with the worst being with degeneration in the spine. The spine triggers migraines. I have all the symptoms of Lupus, red face, eye inflammation, worsened pain & fatigue, etc., but, not 100% confirmed diagnosis. My numbers are all over the place. I feel the best when I am on prednisone, but, not a drug I want to be on long term due to the side effects. Plaquenil has helped me greatly. I had to come off this summer as I had so much upper respiratory infection and Plaquenil is an immune suppressant drug. Have you tried massages? Are you able to soak in the tub in epsom salt? Have you tried Voltaren gel? Pain is debilitating and wearing. I am praying for you to get some relief and I am so sorry.

Thank you so much for your thoughtful reply. A massage sounds wonderful but I’m concerned that the pressure may cause pain itself. I have tried soaking in my jacuzzi tub and it brings relief although it’s been a struggle lately getting in and out. I use Voltaren gel on my hands and it is nice for a little bit. Today I woke up with painful spasms in my legs. I put my heating pad under my calves and wrapped up in a blanket, took a Tramadol and waited for it to kick in. I thank God for my sweet husband and the things that bring a little bit of relief.

Dear twinkie23, I have had MCTD with SLE for 43 years now. I thoroughly understand where you are coming from. I spent years trying to find a way to manage the pain without drugs. I finally came up with throwing my schedule out the window and doing things my way. I sleep when I need to, I move around when I can, but most of all I learned to realize that the pain is just a part of me and is not all of me. I now use deep breathing and relaxation to relax my muscles and that helps. Pain and stress causes you to tense up and increases the pain. I have fibromyalgia so I cannot do massage. Most of all I have experimented with many different things until I found what worked for me. I hope you find how to relax and work with the pain rather than trying to fight it. It took me many years to discover that one. Good luck and keep smiling.
MCTD43

Just a suggestion: I was told by the pain clinic to apply the Volatren Gel on my hands 4 times a day and to apply it liberally. I know about the struggle of getting out the tub...whew, these arthritic knees. You are a blessed woman to have your husband to help take care of you...I do too! Sending up prayers for you today.

Would any or all of you who have lupus pain tell me more about what type of pain you are experiencing (muscle, joint, etc.)? I am new to lupus but have other illnesses and never know what might be causing what. My rheumatologist is not very forthcoming with info, either.

Also, I tried hydroxychloroquine for a few weeks, but it kicked up my ulcerative colitis. Rheumatologist says some people have fewer side effects with the brand name equivalent, Plaquenil. Has anyone switched from the generic to the brand because of bowel problems, and if so, did the brand name drug cause any havoc?

Bless you. There is a 100 mg Plaquenil that you can take versus the 200. I have to take 1/2 of the 100 due to neurological side effects. You have to be really assertive with rheumatologists to get answers. I hurt all over, I have a warm red face, I am heat intolerant and can't take the sun but a few minutes at the time. I also battle eye inflammation at times. I have suspected borderline Lupus. Praying for you to get a medicine that works for you.

Hi, covidstinks2023. What kind of neurological side effects do you get from the Plaquinel? Also, as to eye inflammation: my eyes are extremely dry and I have to use lubricating drops often in order to feel comfortable. Right now I am using Systane Complete, with good results. Perhaps that could help you with your inflammation?