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Addison's Disease: Tired of being tired
I have had addisons disease for 5 years treated with prednisone I can not taper to the 5 mg and have been on 40 mg for three years also contracted lymes 6 years ago salmonella 10 years ago I know I am gradually slowing down but took the flu shot a month ago and I have absolutely no energy now and everything is just sore and achy. Tylenol helps some to push through and exercise helps to when I can. involved with agriculture so chores always have to be done but some days its a chore. I blame the flu shot for now but there are so many factors to consider. The prednisone has me pre diabetic. Thoughts would be appreciated.
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may sleep 16 or more hours a day nausea confusion but also had this dosage for this long of time its the same. The steroids begin to work adversely on soft tissue I cant think as clearly as I would like don't have the stamina I should and for someone that has worked with his hands and mind; well you know. My wife and I never had a convential marriage she worked in the city as an attorney I raised kids and lived as she calls hand to mouth always taking jobs with enough flex to be there for the kids. She is still able clumbsy with her right side and having more trouble using the right words at times. Are you familiar with show animals? If so I can tell more stories about how I got here,
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1 ReactionTeresa We began with an doc from ou med center felt like a lab rat he always had students with him. my last dic punted and suggested mayo but on limited incomes that is hard to do.
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2 Reactionsreply ended up below somehow
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2 Reactions@spice when I try to taper too quickly the pain comes back a little stronger and the aches and joint stiffness is a little worse than the previous dosage. I try to tolerate it for a few days to see if it will go away and then if not I switch back to the previous dosage. My first round it took me almost 6 months or so going between 1 mg and 1/2 mg until I was finally able to stop taking it without significant pain. I think the exercise helped in that respect...not a lot of it but whatever you can do. I have a recumbent exercise bike that I ride 4 to 5 days a week for about 30 minutes when I first get up. It helps get my legs going and sets me up for the day.
I'm getting around 7+ hours sleep a night and feel tired but I don't have any nausea. I also have back and forth taking flu shots and last year convinced me never again...hadn't been sick with the flu like stuff for a couple of years and a local supermarket was giving 25 cents a gallon off on gasoline if you got a flu shot there in their health clinic. Mr Never Pass Up a Bargain got the flu shot and within a week got the flu. Over the years I've had similar experiences with getting the flu shot so I'm just trying to keep my hands washed and keep my distance when I hear coughing...☺
Have your doctors or rheumatologist given you a tapering schedule? I would start with their tapering schedule and work with them to see if that helps.
John
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2 Reactions@spice Hi, My friend! I assume you have done some things I will suggest, but just in case you have not, you might try. Go to these sites, Enter Addisons in the search engine, and see if there is anything you have not learned before. And go to their contact area and try to talk with someone there. Some will talk with you, some will not. http://www.AddisonFoundation.org, Addison.org, MayoClinic.org, Alnylam.com, City of Hope.org, FredHutchinson.org, Each of these, and many more, will have portions of their sites dedicated to patient education. My own personal favorites are Mayo and Alnylam. When you go to their sites, many will have videos you can learn a lot from. Read any medicine bottles you have from meds you have used for Addison. Try to contact the maker through their site. Ask Mayo or Stanford or Alnylam or Sloan-Kettering who might be working in the area. Get into NIH.gov (National Institutes of Health) Library. Yes, some of this stuff will be very technical and advanced, but read the bibliography at the end of the article for more resources.That is where I would start if I were just starting now. But go first to the Addison('s?) Foundation. Ask your doctor or Google for their site. But for sure, talk with Alnylam.com, and ask them who might be working in the area. And tell us how things go in this matter. And don't be afraid to use my name as reference. They will think it is someone they should know. Thanks. Karl D.Min.
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2 Reactionsalways have been on their tapering schedule, biggest hurdle I cross is the care of my animals and my household chores I can only be down so long before they need attention and I don't receive much assistance there and yes we start 1mg at a time. I am pretty convinced my body will never produce cortisol again its just trying to manage the meds.
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2 ReactionsHello @spice
I appreciate your letting us know more about some of your physical responsibilities, "care of my animals and my household chores." When we have chronic illnesses, physical activities do drain our energy reserves much faster. You mentioned in an earlier post that you have show dogs, while I don't know anyone who has show dogs (I have only had household pets)I can certainly understand the extra care, time and attention that they would need.
I'm going to present some questions that might be helpful to you in thinking through this situation that you find yourself in. Please do not feel that you have to post an answer back to Connect, just use these ideas to help you work through your responsibilities.
You say that you don't receive much assistance. What type of help have you asked for? Who might be available to assist you? Is there anyway that you can reduce the number of animals that you care for?
Also, what type of exercise program do you have in place right now to help you deal with stress and anxiety? I understand that when fatigue is paramount, exercise is the last thing we think might help - but sometimes it can restore energy by helping us relax.
Like I said, please feel free to think about these thoughts and use them for a "plan of action" if you will.
Teresa
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1 ReactionI’ve had Addison’s since 1979. I am taking hydrocortisone, 10 mg morning, plus 5 at lunch and 5 at supper. I also take fludrocortisone 0.5 mg every other day. This seems to work for me. I have a fairly good energy level for being 76 and used to work 50 hour weeks when I was still working. I only need to see my endochronologist once a year. I definitely need extra cortisone when I am sick. Hope this is helpful.
Addison's wins
Hi, @spice -- wondering how things went with your tapering the prednisone? Are you still feeling tired often?