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spice
@spice

Posts: 14
Joined: Nov 26, 2017

Addison's Disease: Tired of being tired

Posted by @spice, Nov 26, 2017

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.

REPLY

Hello @spice

Welcome to Mayo Connect – I see that this is your first post and we are glad that you have joined our online patient support group.

I am sorry to hear of your many health issues and the resulting pain and fatigue. Many of us here at Connect also have a mixture of health problems and medications and we understand how frustrating it is to try to go on with life in the normal fashion – sometimes the energy just isn’t there and the pain can be a distraction to everyday life. I would encourage you to discuss these feelings with your doctor – there may be something that can be done to help you.

I am wondering if you have discussed these problems with your primary care doctor as well as an endocrinologist?

Teresa

@hopeful33250

Hello @spice

Welcome to Mayo Connect – I see that this is your first post and we are glad that you have joined our online patient support group.

I am sorry to hear of your many health issues and the resulting pain and fatigue. Many of us here at Connect also have a mixture of health problems and medications and we understand how frustrating it is to try to go on with life in the normal fashion – sometimes the energy just isn’t there and the pain can be a distraction to everyday life. I would encourage you to discuss these feelings with your doctor – there may be something that can be done to help you.

I am wondering if you have discussed these problems with your primary care doctor as well as an endocrinologist?

Teresa

Jump to this post

3 different endocrinologists and my primary has also been involved with the treatment. Do you know of any other treatments for addisons besides prednisone. Hydrocortisone makes me violently ill. but the way to treat the disease seems to be cut and dried for me it is putting a square peg in a round hole. Its the replacement of corticoscal streroids (sp) but I have read of fleurocostal again (sp) that I may suggest. My first concern for now is with all the these things that could effect my immune system is there a possibility the lymes is causing problems or has the cortisone taken me down further? The steroids had caused a weight gain up to 250 a dietary change and I am down to 190 plus dropping all my diabetic numbers/indicators. Sometimes it is just hard to stay positive and work hard to achieve most people take for granted.

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

I am extremely tired all of the time. I take four meds. for my Bipolar and each one has tiredness as a side effect. I sleep 12-14 hours a night and take at least a two hour nap everyday. I feel like I’m sleeping my life away. I feel bad for you and wish I could give you some advice. Have you discussed these problems with your doctor? Please let us know what you are going to do.

Jean

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

thank you for responding discouraging when drs tell you we will try to make this more comfortable for you (fix it!). this is my first time to vent on this subject so give me some latitude for a bit three years is a long time. More I also had a general depression and panic attacks before this started was seeing a psychologist and he became more than a dr but a friend. He retired but we still communicate some its hard for me trust to talk went through 4 others before him. Adding the steroids only compounds that issue to withdrawing more wore my wife out to the point she is tired of hearing what happens sometimes. As a side note she has a stroke at age 42 in 2001 so her health isn’t the best either we try but it is trying maybe I just need an ear. How do I reach @jenner his issues would have started at about the same time.

@lesbatts

I am extremely tired all of the time. I take four meds. for my Bipolar and each one has tiredness as a side effect. I sleep 12-14 hours a night and take at least a two hour nap everyday. I feel like I’m sleeping my life away. I feel bad for you and wish I could give you some advice. Have you discussed these problems with your doctor? Please let us know what you are going to do.

Jean

Jump to this post

Do you feel even worse when you try to push your self through to accomplish something?

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

Hello @spice

I’m glad that you added some information to your background of physical and emotional health difficulties, including those of your wife. You are both dealing with a great deal right now. I’m so glad that you reached out – Mayo Connect is a good place to vent!

I’m glad to hear that you have a supportive person in your life – your retired psychologist sounds like a real gem! His continued friendship must be very encouraging to you now.

I realize that you have seen a lot of specialists – however, if I may ask: have you been to a large university medical and/or research center? Are you near a Mayo Clinic location (Minnesota, Florida and Arizona)? If you would like to seek a second opinion at Mayo Clinic, you can submit an appointment request here: http://mayocl.in/1mtmR63 Often, after the first consultation, Mayo experts can work with a local provider to continued care.Also, Mayo has a Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. These are hospitals in various cities that are connected with Mayo and are advised by Mayo doctors.

Often at large medical centers, where there is a plethora of specialists, you can get answers that you might not find in other hospital systems.

In regards to your question as to how to reach @jenner – Just start a post and begin it (as I did with yours) with @jenner a the top of the post.

I wish you and your wife well and encourage you to keep venting and posting to your heart’s desire 🙂 Here at Mayo Connect you have many listening ears that will be happy to listen to your situation and share with you.

Teresa

Hello @spice, I’m also not real happy about taking prednisone for the second time around with my polymyalgia rheumatica (PMR) but it’s pretty much the only thing that makes the pain, stiffness and inflammation go away. I started at 20 mg last year in September and am now at 3 mg having tried twice to drop to 2.5 mg. My last round with PMR took me 3 years to taper off of prednisone. The autoimmune system has a lot of unknowns for all of us with one of the many different autoimmune diseases. To make it even more complex, each of us react differently to treatments and therapy. All that said, you are on the right course of asking questions and learning as much as you can about your disease. You are your best advocate and the more you know, the better you can work with your doctors to find a treatment that hopefully works for you.

I see that Teresa (@hopeful33250) has already given you the link to Mayo Cinic’s information on Addison’s disease along with appointment information if that is in the realm of possibility. I’m tagging @kanaazpereira and @lisalucier as they may be able to offer some suggestions.

I found an interesting article in the European Journal of Endocrinology that may be helpful:

MANAGEMENT OF ENDOCRINE DISEASE: Regenerative therapies in autoimmune Addison’s disease:
http://www.eje-online.org/content/176/3/R123.short

I found the link using the Google Scholar search engine (https://scholar.google.com/). It has some advantages over a normal search engine in finding medical and drug related information.

Keep asking questions and learning as much as you can.

John

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

Hi, @spice. You have all the latitude to vent as much as you like here. We are listening.

If you’d like to send a private message to @jenner, you can also click on “@jenner” in any of his posts, and that will bring up his profile. Under the description of him at the top of that page, you will see “Send private message.” If you click on those words, you will automatically be started in sending him a message.

You also mentioned your wife had a stroke and her health is not the best. I thought you might like to meet @IndianaScott, a volunteer mentor who works with our Caregivers group, here: https://connect.mayoclinic.org/group/caregivers/

You mentioned you cannot taper to 5 mg of prednisone. Are you experiencing symptoms when you go down to that dosage?

@johnbishop

Hello @spice, I’m also not real happy about taking prednisone for the second time around with my polymyalgia rheumatica (PMR) but it’s pretty much the only thing that makes the pain, stiffness and inflammation go away. I started at 20 mg last year in September and am now at 3 mg having tried twice to drop to 2.5 mg. My last round with PMR took me 3 years to taper off of prednisone. The autoimmune system has a lot of unknowns for all of us with one of the many different autoimmune diseases. To make it even more complex, each of us react differently to treatments and therapy. All that said, you are on the right course of asking questions and learning as much as you can about your disease. You are your best advocate and the more you know, the better you can work with your doctors to find a treatment that hopefully works for you.

I see that Teresa (@hopeful33250) has already given you the link to Mayo Cinic’s information on Addison’s disease along with appointment information if that is in the realm of possibility. I’m tagging @kanaazpereira and @lisalucier as they may be able to offer some suggestions.

I found an interesting article in the European Journal of Endocrinology that may be helpful:

MANAGEMENT OF ENDOCRINE DISEASE: Regenerative therapies in autoimmune Addison’s disease:
http://www.eje-online.org/content/176/3/R123.short

I found the link using the Google Scholar search engine (https://scholar.google.com/). It has some advantages over a normal search engine in finding medical and drug related information.

Keep asking questions and learning as much as you can.

John

Jump to this post

john what kind of any symptoms have you incurred when tapering? Myself I may sleep 16 hours of the day and still feel tired nausea confusion.

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

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,

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

Teresa 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.

@hopeful33250

@spice

You have certainly worked hard to find an answer to your health issues, that is admirable!

Perhaps some of our other members with Addison’s might be able to help offer suggestions from their own experience. At Mayo Connect, we are not medical professionals, just patients, like yourself. Here is some information from Mayo’s website that might be informative, http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757. Here also is a website from the National Adrenal Diseases Foundation, http://www.nadf.us/adrenal-diseases/addisons-disease/.

I am going to tag @yankeegirl and @jimg45 who posted awhile ago regarding Addison’s Disease. Also, you may want to take a look at a previous discussion here at Mayo Connect regarding Addison’s Disease, https://connect.mayoclinic.org/discussion/addison-diease/?pg=1#comment-7749

Teresa

Jump to this post

reply ended up below somehow

@johnbishop

Hello @spice, I’m also not real happy about taking prednisone for the second time around with my polymyalgia rheumatica (PMR) but it’s pretty much the only thing that makes the pain, stiffness and inflammation go away. I started at 20 mg last year in September and am now at 3 mg having tried twice to drop to 2.5 mg. My last round with PMR took me 3 years to taper off of prednisone. The autoimmune system has a lot of unknowns for all of us with one of the many different autoimmune diseases. To make it even more complex, each of us react differently to treatments and therapy. All that said, you are on the right course of asking questions and learning as much as you can about your disease. You are your best advocate and the more you know, the better you can work with your doctors to find a treatment that hopefully works for you.

I see that Teresa (@hopeful33250) has already given you the link to Mayo Cinic’s information on Addison’s disease along with appointment information if that is in the realm of possibility. I’m tagging @kanaazpereira and @lisalucier as they may be able to offer some suggestions.

I found an interesting article in the European Journal of Endocrinology that may be helpful:

MANAGEMENT OF ENDOCRINE DISEASE: Regenerative therapies in autoimmune Addison’s disease:
http://www.eje-online.org/content/176/3/R123.short

I found the link using the Google Scholar search engine (https://scholar.google.com/). It has some advantages over a normal search engine in finding medical and drug related information.

Keep asking questions and learning as much as you can.

John

Jump to this post

@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

@hopeful33250

Hello @spice

Welcome to Mayo Connect – I see that this is your first post and we are glad that you have joined our online patient support group.

I am sorry to hear of your many health issues and the resulting pain and fatigue. Many of us here at Connect also have a mixture of health problems and medications and we understand how frustrating it is to try to go on with life in the normal fashion – sometimes the energy just isn’t there and the pain can be a distraction to everyday life. I would encourage you to discuss these feelings with your doctor – there may be something that can be done to help you.

I am wondering if you have discussed these problems with your primary care doctor as well as an endocrinologist?

Teresa

Jump to this post

@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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