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lupus and adrenal suppression
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NancysCats posted:
After severe lupus flare with adrenal crisis in January, I have been left extremely weak, with hardly a life. I sweat when I try to lift my arms above my head, I cannot walk more than from room to room, stairs are grueling. My ACTH and Cortisol levels remain low with 10mg of Prednisone daily. This is no way to live, and people don't understand the inability to do things, because after all, I have lupus and I don't 'look sick" although this year has beaten me up a lot. I've gotten pale, adrenal suppression, diabetes from prednisone, and want to know and talk to others, and I am sure you are out there. This has been almost a year, and every time I think I will get some strength back, I relapse. I can't even go Christmas shopping in a mall. I feel like my life has been ripped up from under me, and I have lost so much. The ability to just get up and go someplace is gone, the ability to make long range plans is gone, the ability to just run up and down the stairs to pick up something is gone. Now I stress when I go somewhere as to how far I will need to walk to get there, even short entrances..as it will use my energy. And I SWEAT from the scalp so severely when I begin getting tired (which is very little activity, arms above my head, bending, stretching, walking more than 2 rooms, stairs, etc. Additionally, after the sweating then I get such extreme fatigue I have to lie down. Not just sit down, actually lie down. Now my BS is running high from Prednisone, and I am cutting down on it...to a goal of 10mg, presently 40mg due to asthma. PLEASE,anyone else out there with similar problems? I am sure with having lupus so many of you have seen it all. I feel like I need to get a wheelchair to get anywhere...I'm 59, and a sinus inf that went through my system started this in January, followed by adrenal crisis in March, and I have been fighting for my life since. PLEASE...any discussions on this will be welcome. Nancy
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lisaisweavebee responded:
Hi Nancy,

I am so sorry you are having such a horrible time with this dang disease. It certainly sounds as if it is really kicking your butt right now! Are you seeing a endocrinologist (sp?) for the adrenal / cortisol problems? The sweating might be related to the diabetes. What doctors are you seeing? Any chance you have fibro, as it can make the fatigue horrible?

I think you should make a appointment with your rheumy asap and explain to him, point blank, how miserable you are and insist on some help. It does take awhile to get the right combination of drugs to work, so try to hang in there.

Sorry I wasn't much help but wanted you to know you are not alone and that we care. Keep us posted on how you are doing and I hope you get some relief soon!

Hugs,

Lisa
 
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NancysCats replied to lisaisweavebee's response:
Lisa,

Thanks for your reply. Oh my, do I have endocrinologist and rhuemy. I see them every month at least once. They are a bit puzzled at how difficult it is to get my adrenal glands working again. The fatigue, like fibro which I think every lupus patient eventually gets, is much worse than the fibro. I physcially need to get to a place to lie down and can't walk anymore. The sweating, I'm not sure. I have tested my sugar with it, and not changed. So, I think it is adrenal related since I become so weak afterward. Today I was cleaning out my fall clothes, and I can only do a few pieces, then lie down and rest. It is awful. IT has just been a rough year, and I'm sure someone else has these adrenal problems with their lupus or these symptoms. I just need to talk to others who are so limited. Last summer, of 2010, I was working 2 part-time jobs. Now I can't work. period. I've worked for 40 years, so it has been an adjustment. I handle it well, but it is a bit frustrating lately. Thanks for listening.
 
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lisaisweavebee replied to NancysCats's response:
Happy to listen! This site is good for connecting with other lupies who understand. And a great place to vent or whine on bad days.

Pred can really mess with the adrenal glands, because they (the adrenal glands) stop working all together on higher doses so tapering is a long, slow process.

I really hope you get some relief soon as it must just be horrible to be so fatigued!! I can take pain, but the fatigue can really kick my butt!

Hope you feel better soon,

Lisa
 
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katinae responded:
Nancy
I've had lupus for 30 years so I'm very familiar with what you describe. I don't know why the severe sweating happens but I know that I get it also, most recently from peeling vegetables while I was sitting down! Try shopping on-line for the holidays. Complain more to your friends and good luck. Also try to follow some of the chat boards if you can.
Katina
 
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lupylisa44 responded:
Hi and Welcome!

I am sorry to hear that you are having such a hard time right now!

The endocrine system is responsible for the regulation of many different hormones in your body that affect just about every system in the body. It is very complex. All of the endocrine systems are connected so when your adrenals are not functioning properly, it can throw the rest of the endocrine system off. many of your issues including the sweating, fatigue, diabetes, cortisol levels etc are indications that yours is seriously out of whack! Have you gone through menopause yet? It could be that your female hormones are being affected as well.

Here are a couple of links to find out more info about the endocrine system:
http://www.emedicinehealth.com/anatomy_of_the_endocrine_system/article_em.htm

http://en.wikipedia.org/wiki/Endocrine_system

Have your doctors ever mentioned addison's disease? It may be something worth looking into:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001416/

http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx

It may be a good idea to get a second opinion from another endocrinologist who specializes in adrenal function or someone who has a more integrative approach. After seeing several endocrinologists I ended up finding a doctor who specializes in integrative medicine and she was able really help meget my hormones and thyroid regulated.

I used the phyusician finder at this website to find her: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457489/k.60DF/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

I hope you find some answers soon! don't give up trying to find them! Let me know if there is anything I can do to help you.

Lupylisa
With love, with patience and with faith, we'll make our way.


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