Addison's Disease Support Group

Hi Connie,
It is a ridiculous road we seem to be on. I have horrible joint pain, and truly believe that whatever is wrong with me has destroyed my joints and my adrenal glands. That being said, I know of no such disease. I figure it is some auto immune disease or process. Mine all seemed to develop simultaneously, slowly at first and then with a bang. My joints are destroyed. I've had a knee replaced, need another one, need an ankle fused, my spine is a disaster. I can't do much of anything anymore without serious consequences and it makes life miserable. I have no energy at all, never have really , but its worse now. Whatever is going on, it sucks. Sorry to hear you having similar problems.

Vanyel

So, I'm not crazy! Do you think that the auto-immune problem destroyed(s) our adrenals and continues forth to our joints? My entire life changed after energy left. I was the original Eveready Bunny and now I have to work closely with energy in order to go to the grocery store. Very frustrating! What meds are you on? I take Prednisone, thyroid, vitamin D, and other meds. Absolutely HATE the prednisone. Have tried other steroids but they just didn't work as well as the old stand-by. It's a pleasure to meet you -- sorry under these circumstances, however.

Connie,
I think in my case whatever auto immune process is going on is eating my joints, and ate my adrenal glands and probably the thyroid too. Its all been going on a long time.
I take prednisone as well. I tried hydrocortisone, but it didn't seem to work as well. Nothing seems to help with the energy issue though. I also take synthroid, DHEA, progesterone, cymbalta, ultram, potassium, toprol, vit D, aspirin, fish oil, and more. Its all too much to even remember. Its just plain ridiculous. I never had any energy in my life. Everything has always been a struggle. At least you have had some energy in the past. Have you seen anyone for your joints?

Vanyel

I'm going to ask my doctor at next appointment to refer me to someone that has enough time and expertise to get into that issue. I've had insomnia for many, many years (haven't really slept well since 1977) and these days I cannot sleep because I have shoulder, wrist, finger, and knee pain. Wake up (like this morning) at 1:30, 2:00 a.m., and cannot sleep because of pain. I use pain control but it doesn't touch the pain. Have used heating pads, hot baths, massage, and other techniques but still the pain is distracting.

Yes, you are right about having had the energy in the past. I need to thank God for the years that I had the 36-hour day energy. Just is such a contrast now with no energy. Sometimes I feel like my 88-year-old mother. We have about the same lifestyles. Guess it is all in perspective, like you said. Be thankful and enjoy the energy I have. Instead of loss, look at what I still have.

Have you seen a rheumatologist or ortho for your bone pain.

Does the Cymbalta help you with your joint problems? My sister takes it for fibromyalgia and it helps her. I have tried anti-depressants in the past for the joint pain but it has never helped. Does the oil supplement help?

I've taken different forms of steroid but always have to come back to Prednisone. Seems to make me feel like I'm in someone else's skin.

Take care and thanks for the info.

Connie,
I take the cymbalta for depression. It does not seem to do anything for the pain. Most pain meds don't seem to work at all. I take ultram all the time to keep it at bay, but when those bones go to rubbing, nothing stops the pain. Cymbalta usually helps more with neurogenic type pain, like fibromyalagia or diabetic neuropathy. THe fish oil I take for cholesterol. I take glucosamine stuff too, but it doesn't help either. Nothing helps, sad to say. I have been to rheumatologist and orthopedist for these joints. The rheumy was an idiot and strung me along for 2 or 3 years treating me for inflammatory arthritis that she then decided I didn't have and sent me packing. I am still furiious with her. moron. The ortho doc can't do much. He replaced one knee. He operated on an ankle but didn't help it any. He'll have to fuse that next. The other knee will need replacing too. I just don't know how to find time for all the surgery. Its absurd. The prednisone keeps me alive I guess, but other than that I don't notice much of anything from it unless I take way too much - then I get fat. sigh

Vanyel

Hi Connie. Welcome. I too get bad joint and bone pain. The bone pain I noticed when I was on prednisone and being tapered down. It WAS HORRIBLE! Now I have joint pain in my right hand in the joints by my pinky.
This pain is different than my fibromyalgia pain ( which now my newest endocrinologist says she thinks I should see a rheumatologist again and get re-evaluated as she thinks maybe I do not have fibro but some other connective tissue disease).
Man i hit a button and it deleted 1/2 of what I just wrote!
I think I was saying that I take hydrocortisone now. The doctor did mention switching to a low dose of prednisone but I am so leary of that.
I have had horrible fatigue and energy issues since this all started back in Feb 2008.
Recently had a bad "set back" and as of July through about 1/2 of September was very weak, fatigued and lost 30+lbs now. They bumped up my steroids ( I was on 10/10 when I got ill) to 30/20. Now we are trying a new dose and trying to taper but twice in 2 weeks have had to re bump them up to 20/20/20!
I started feeling REALLY good, almost too good not long ago and am not sure exactly why. It was like a pendulum swinging from one extreme to the other.
I take Effexor and we did bump that up from 150/day to 200/day back on Aug 30th. Then recently I started having some bad side effects and think it is too much effexor so we have gone back down to 150.
I have been having sleep issues for a little over a month now. I wake up at 3 or 4 AM ( one day 2AM!), and most days do not even nap anymore, which is unusual for me.
This week has been bad for me. I am all over the place with my moods and just so out of sorts. I spoke to 3 on call drs yesterday and saw my GP and had to call in sick which i can afford to do.
My GP gave me Ambien to take but i am actually a little fearful of taking it. But need to get this sleep issue under control as I am sure it is taking its toll on me.
Anyway, you are not alone..we all have our stories and issues with adrenal issues. I just wish more doctors knew more about it than then they seem to!
we may have different stories but all have similar symptoms....it is a big mystery I think and just trying to cope some days is hard enough!
Sorry you are not doing well...hope you get to feeling better!

My doctor has me starting the "Inflammation Free Diet" by Reinagle. I haven't gotten the book yet, but have been looking at the ratings from nutritiondata.com. Every food is given a positive or negative number on how it affects inflamation. The higher the number the better. The objective is to have a positive net at the end of the day. I can't stand the joint pain, but want to try something natural before I get on more meds.

Bird

ah, the joint pain. or, as i like to call it, HELL.

i'm so sorry that everyone else is going through this, too - but again, at least we're not all nuts, right?

i'm pretty sure, as i have *secondary* addison's, that i know EXACTLY when i first got/started to get the disease:

i'm asthmatic, and so over the years when my breathing has been troubled, i've been put on prednisone to help open my lungs. in '04
i was having so much trouble w/my breathing that i was hospitalized for it for the first time ever - and PUMPED full of steroids for days. eventually things got better, i could breathe again, and all was well. for a short while, anyway ...

a few days later i woke up in the middle of the night in the worse pain i had EVER FELT IN MY LIFE. it was in my knees, and it. was. hell. i was crying and screaming and sobbing, and had NO clue what to do. i couldn't walk, bend them, anything. i was seriously scared!

by the GRACE OF GOD my friend/roomie got me to the ER (i have NO idea why i didn't call an ambulance) where they checked out ten million things and had no idea what was wrong - so they TAPPED MY KNEES - only there was NOTHING in them. has anyone else been through this? you would remember - it makes you want to die, right there, on the spot. it was funny, actually; one of the ER docs gave me his hand to hold while the other doc did it, and when they were done i could *see* that pain in his face. i apologized, and he said something like, 'no, it's okay - i've got the other hand ...' i *really* hurt him, haha. but then again, those bastards were KILLING me! and of course for no reason - there was no fluid in my knee, the whole thing was just for fun. at this point i was out for blood, only i was still in so much pain i wanted to DIE.

so, they admitted me. and kept me for awhile. and had no clue what was wrong, so they kept me on pain meds, and fluids, and ran a million tests - i think lupus was a big one they were looking at, and other autoimmune diseases - but they all came back negative. that was kind of the round one of the stay.

then it got scary. hiv tests, have you traveled to any foriegn countries in the last such-and-such periods of time, and all kinds of other questions that were terrifying to me. no, no, no. no drugs, no this, no that - i was as lame as they came, socially. so still, nothing.

they ended up releasing me when they pain became tolerable, but with no diagnosis, which was great. then slowly but surely a million other medical problems started to hit me, and almost three years later i was finally diagnosed with addison's.

here's the kicker: with the addison's, i get joint pain. either from taking TOO MUCH steroid when i need it, or when i'm taking a lower amount. and every blue moon, every once in awhile, i'll get pain that's *almost* as bad as that pain was that day. i am CONVINCED now that it was just unbelievable, HELL-ON-EARTH, how is this even possible joint pain, and that NO ONE caught the correlation between that and the huge amounts of steroids that they had *just* had me on. and since i hadn't been diagnosed w/any of this yet, i had NO clue.

my GOD i wish my chihuahua would stop snoring. he's so LOUD!
cute, but L-O-U-D!!! it's amazing the sounds little dogs can make.

so, through a TON of rambling (i hope you get used to that, lol) ... i'm basically saying that yes, i get this awful joint pain, too, and that it seems to be brought on by a myriad of things: going down on steroids, going up on steroids, just being on steroids at all, NO reason at all, and last, but certainly least ...

AT SEASON CHANGE!!!

is anyone else currently dealing with this? knees, especially?
let me know - and i hope that you all feel better!!

xoxo, misa

ps: i forgot to mention the miracle i've found for my joint pain:

icy hot TAPE. it looks almost like an ace bandage, but it's a roll
of sticky tape that you can wrap around any joint that you need. it
doesn't smell, it's doesn't fall off, you can rip it right where you
need it at the roll (no scissors needed), and most importantly,

IT WORKS BETTER THAN DRUGS - I. LOVE. IT !!

it's a bit more money than the regular icy hot, but worth it.

hope this helps!
xoxo, misa
(who's off to tape her lame-o knees right now...)

Wanted to let you know something I just read this weekend: I had a bug and was using some generic "Vicks" type vapro rub and it said on the jar ( which I never read before) that it is also good one joint pain!
It may be worth a try!