Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I was just wondering if any one has on and off symptoms of joint pain. I even have joint edema with tendre to the touch ever so often. Is anyone else have this also?
Exercise is so vital to keeping in motion, yet it becomes so painful it is nigh impossible. How do we do it? I kept in motion pretty well up until the last year or so now. When my right knee went, i got it replaced and kept right on going. Then the left ankle went. I had surgery on it, but it never got any better, in fact got worse. THen the left knee went. Now I need surgery for both of them. I can't even walk my dogs anymore. I walk with a cane at work. I don't know how to fit exercise in anymore. If I do any, I pay for it for days. I'm so exhausted almost all the time, I can't fathom finding the energy to waste just exercising. I'd never get through work. I have really hit a wall it seems. I need to get my left leg fixed so I can move again. BUt I can't take 6 months off work for the 2 surgeries, and there's no guarantee they will work anyway. Then there is my back and neck. They both shot too. I don't want any surgery on them. I miss hiking. I want to ride my horse, and my bike. But I can't even make it up and down the stairs in my house. Its so not fair. I used to be an athlete. I used to climb mountains. Jump horses. Ski cross country. Where did my life go?
joint pain is also par for the course for me, too. it comes in spurts at times, or it might just be for one day .. it's crazy. i definitely contribute it to addison's.
i'm technically a secondary, so i have this to add: i actually *got* addys
FROM taking steroids (for asthma). when i would go on them, i would often times get joint pain - and when i would be on large doses, and then go off of them, omgkillmeplease my joints hurt SO MUCH. it was absolutely unbearable. so don't be fooled; while steroids are helping us, joint pain is one more side effect they have that affects us all differently. many aren't aware because they've never taken them before they were diagnosed with addys, so all of the symptoms are new *after* the diagnosis.
just my little brick of info. hope it helps, and that you don't have lyme disease - you have enough to deal with right now!
xoxo, misa
So sorry for your years of pain, but I'm not quite clear on your thoughts re: pre & post AD diagnosis. Could you help my fizzled brain understand your thoughts? All but for one of my joint, bone, ligament & muscle problems developed many, many years before I developed AD, not after. I completely agree, we're all different, different levels of pain, different methods of coping, tolerance, treatment and some have conditions, in addition to AD. I always appreciate learning, moreso from those with first hand experience, but I'm a bit confused...probably misreading things, but your theory may help!
As always, thanks much.
I'm trying to think of something/anything that may give you some freedom from your body. I realize this may seem a bit 'out there' to some & certainly not a cure-all, but when you do have moments of physical inactivity & not too tired, do you think some mental zoning out might help?
I know your interests were many and all physical, but maybe you can find an alternative form of solace & escape, even for brief moments. I'm not necessarily speaking of meditation...difficult when in physical pain, but ex: music - Jim Morrison (great poet), CCR (artistic tales of reality), Willie (what can I say:),the masters of 'our' time, or even Rachmaninoff (classically ambient), anything you enjoy to separate one part of your being, from the other. Plug in some music, hook up a TENS, if you're on pain meds, (figuratively) fly, far away from your body. It may bring you much needed healing & reprieve, by altering your pain pathways.
Another thought. Can you do some seated, or lying down, (zero impact) mild stretches, just to get some blood flow/oxygen to your wounded sites, nothing regimented?
Life is so immensely unfair, absolutely heartbreaking. I pray, with ALL of my might, you will rediscover new joy & passion.