I have had lupus for 20+ years but was always able to maintain active life and work schedule. About 4 years ago was hospitalized and diagnosed in addition to lupus with adrenal insufficiency, osteoporosis, osteoarthritis, and uncontrolled b/p. The pain became more severe than it has ever been. Saw pain management drs and ended up taking 60 mgs oxycodone daily which barely relieved pain. I am on injectable humira (every other week), prolio (2 times/yr) plus 4 different b/p meds, hydrocortisone for adrenals + other meds. New pain dr said I am getting rebound pain from pain meds. Am being entered into hospital Monday to be detoxed … said I had to be in medical hospital due to adrenal probs and then 3weeks in rehab inpatient facility. I am depressed and worn out. The adrenal insufficiency is irreversible and I will take replacement adrenal cortisone the rest of my life. Can anyone offer any advice?
I am sorry for your struggles, my heart goes out to you. Know, I too am in the lupus struggle and am learning from posts. Good Luck with your detox
I'm seeing a doctor currently who believes one of the root causes of adrenal problems lies with Candida. I know a lot of doctors don't even believe it's real ... but I know it is. He had me start the diet as well as take anti-fungal meds twice a day to kill off the excess yeast. It's a tough diet to stick to, but I'm hoping end results will be worth it. I'm still feeling pretty run down, but I haven't started the HC yet and that's prob why.
Could be something worth looking into.
Thank you for encouraging words. The adrenal insufficiency was caused by years of being on steroids, according to three endrocrinologists at the Houston medical center. I was on massive doses at various times over the years in order to keep me alive so those of you on steroids pls don’t think this will happen to you. I am being admitted Monday and I am frightened. My constant prayer, which has been daily for years, is “Be not afraid. I go before you always” and followed by “Lord, give me strength”. I don’t know why I am so anxious. Probably because I have been on some form of pain meds for years. I need to point out that pain medication is a tool to alleviate pain. But in my case, the various pain docs kept changing and increasing meds and the pain was worsening. Pls remember me in your prayers. Thank you and God bless all of you.
We can all empathize with your frustration.
I have a laundry list of medical problems, medications and 4 AI diseases + Fibro. Went to pain management (more like stormed the program) and didn't do much except for taking oxycodone 2x/day. Couldn't take the second dose because I became so dopey and couldn't drive and made me sleep a lot. I "survived" like this for a year. At this HMO, the pain management program usually doesn't take cancer and AI patients--I wonder why. I really question the diagnosis of "rebound pain." They were always doing "spot" urine tests. May be necessary, but they treated everyone like an addict. Never gave me counseling as to what options I had.
Just recently had so much pain that I couldn't talk, walk or do anything but eat,bathe, bed and bathroom. Went to my shrink and he told me that some of the antidepressants help with the pain. He started my on Effexor. My pain is 10% of what it was. The Effexor blocks seratonin (brain chemical) uptake--brain doesn't get chemical pain message.
This is such a relief to me and I don't have to take narcotics. However, I do take a pain pill at night because I usually can't move while I'm asleep because of severe arthritis pain.
With all of us sharing our experiences it give you some insight as to what can a what does occur. Remember, everyone is different as to how their AI diseases manifest.
You got to hold on.
32 years with lupus and the steroids had done in my adrenal glands also. Had a wonderful Rheumatologist who got me off the steroids and pain meds. At 22 was in the hospital for 10 days and then off from work for an additional 9 weeks. 18 months to taper the Medrol down to 5 mg every other day, but that and NSAIDS plus an anti-depressant have been keeping the adrenal insufficiency and pain at bay. It will be a bumpy road for you but use the time to rest. Also you may find the therapists in the rehab facility maybe become your best friends, they can offer non-pharmaceutical approaches to pain management that the doctors would not think of. Best wishes and prayers for a good outcome from this for you.
Linda, you certainly are in my prayers. Thanks for the reminder of "Do not be afraid...." It is one that I have forgotten about. I have very low adrenal function but nothing like what you have going on now. All of us have something to deal with and that is why I send prayers and healing thoughts for everyone. Best of luck. Gentle hugs, Rita
Hello and all very best of wishes to you with the harsh time in front.
Yes, I rather feel that although steroids can seem like a god send and immediately reduce inflammation/ pain etc but there is a cost. I strongly think the artificial meds can help but still further reduce our own capabilities re adrenal function, and of course your bone probs reflect entirely on the steroids. Make Absolutly certain you reduce the steroids so very slowly to allow time for your own functioning to return.
Hope to goodness they find something before too long that can truly help allelviate our horrible symptoms without creating other problems for us to have to contend with. Let us all know how it goes. Thank good ness for this site/ a huge support to us all, Louise with love
where do u live to get 60? my doctor wont go up then 40 4 times a day ten mg and its killing me . I should be able to take as much as I want opiates are safe then the other stuff. I noticed they only work when combined with tylenol though