Autoimmune

weezie1946, Praying for you. I'm so sorry you are battling so much.

I have had Fibromyalgia (30 years)/Hashitmotos/Hyperthyroidism/Bilateral Osteoarthritis & have it in my spine & neck. I could not take any of the meds for Fibromyalgia...the side effects were horrific. I do occasionally take 1/2 of Flexeril for muscle spasms & Tylenol. I could not tolerate Hydroxycloroquin because it caused neurological issues.

I went to a Pain Clinic doctor and he prescribed me compounded pain cream that fit my needs. I asked for no opioids. This pain cream has been a life saver. It takes the edge off for me. I do use heat packs (Bedbuddy/Amazon). Seek out a pain clinic doctor that specializes in Fibromyalgia & Autoimmune Diseases.

If you can soak in Epsom salt it does help as well. Also if you can tolerate an occasional massage.

I'm sure you are exhausted a lot.....rest as much as you can. That is so important.

Praying for relief for you. Blessings....

weezie, can't blame you, but you have to wait for CART T https://www.uchicagomedicine.org/forefront/immunotherapy-articles/car-t-cell-therapy-treating-autoimmune-diseases

I’m sorry you’re feeling so rough - can I ask why you came off the hydroxy? Was it because of side effects?

I believe Rituxan can be used for both Lupus and RA. I’m currently on Rituxan myself for an RA/dermatomyositis/possible MS overlap and so far so good. Even though the literature says it takes at least 6 weeks to work, I started to noticed improvement after the two-week loading doses. I had severe hip and shoulder pain and noticed improvement almost right away in both pain and fatigue. Maybe it’s something you can ask your doctor about. It’s an infusion you get two doses 2 weeks apart and then it’s every 6 months.

Please do speak to someone as soon as possible as chronic pain is debilitating, both physically and mentally. It takes a toll and I can empathize as I have been where you are.

@weezie1946, Sorry you are having to deal with so much pain and fatigue. As others have mentioned, it's really important to speak with your doctor and hopefully you can get the pain and fatigue under control. Mayo Clinic has some information on medications and treatment that might be helpful when you talk to your doctor - https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/drc-20353653.

@gently
Yes! That's the perfect link to share. Especially if you are younger, more of a chance you will have an opportunity for this. Thanks!

These are really great suggestions. I want to say that because you are young, you have more hope of new treatments coming along. You have years to come for healing. I was 31 when I became disabled by chronic fatigue. I lost my career as an RN in oncology and hospice. I was dedicated and loved my work. I actually struggled for about 7 years with no money or healthcare, and definitely had depression. It wasn't until I realized if I found even one thing to enjoy every day, my day was worthwhile. I started to build on this sense of being worthwhile from that point.

I wrote every day. All I did was sleep and write. In time I became a poet on a spiritual path. Because: this is my greatest advice (except you deserve to get therapy around all this loss and suffering)

My life changed in ways in the outside world, my inner life has become rich. I have dreams and hopes, new community.

For me, I realized 30 years later, I would not change a thing. Because, I wouldn't be who I am without what I've been through.
I tell people that illness informs my life, but does not define me.

Thinking of you, hope you let us know how you are doing