The Lupus Forum banner
1 - 11 of 11 Posts

·
Registered
Joined
·
1,485 Posts
Discussion Starter · #1 ·
I came home from Phoenix and started -- on doctor's orders -- dropping my pred dose. I had already (without telling him) dropped from 20 to 10 a day. You wouldn't think it would be that hard. I'm down to 5 every other day. I've lost 12 pounds, thank goodness.

The problem is that visiting with my mom, who is in hospice now, has set off the most terrible bout of hypochondria you can imagine. I already suffer from anxiety disorder. Yes, it's a real thing and it's terrible. So now every ache and pain terrifies me. And I'm having plenty of aches and pains.

So I'm miserable inside this body that seems to hate "me". I'm having the same symptoms that finally sent me to the doctor for a new round of pred: pain, more pain, fatigue, pain. Also I'm having migraines. Hit without warning. Bam, I'm throwing up and a terrible pain is grinding behind one eye or the other. Thakfully, I have Imitrex nasal sprays.

Anyway, does anyone have suggestions for gettng ot o the hypochronia business?

Sunny
 

·
Registered
Joined
·
2,404 Posts
Dear Sunny,
You are bound to feel a bit odd emotionally at the moment. Having your Mum in the Hospice will make you think about things. I know when my Father died a few months back, I was getting the oddest thoughts. I don't suppose I am helping you very much but what I mean to say is that how you feel at the moment is probably a very normal reaction. Losing the weight is great though, Well Done. I assume you have been on steroids long term, so please,please remember that cutting down is meant to be a very slow process. I do wonder if you may have gone a little too fast.

I hope you have plenty of friends who can help you over this bad patch, and of course you have everyone here.
x Lola
 

·
Administrator
Joined
·
10,196 Posts
Hi Sunny,

I am sorry to hear your Mom has declined even more. My thoughts will be with you and your family.

Since things are spiraling out of control I suggest you contact the doctor that handles your anxiety disorder. It sounds like you may need some talk therapy to get you through this trying time. Getting your fears out in the open is the first step. Now you need some tips to help keep the anxiety at bay.

A past co-worker of mine recently went through a similar thing. His medication was not enough to keep the anxiety at bay. He too was making himself physically ill. A few bi-weekly sessions of talk therapy helped him put his fears in perspective. He was also given some things to try when he feels an attack coming on. Now his life is back on track.

Remember we are all here for you :grouphug2:

Take care,
Lazylegs
 

·
Registered
Joined
·
4,444 Posts
First off, I'm not convinced you are having a hypochondria crisis! Maybe a flare up of lupus as well as some anxiety attacks though. How long were you on prednisone and how have you lowered the dose? If it was over a month then usually you would only lower by 1mg every week or two, and reserve the alternate day dosing until you get down to 2mg or 2.5 mg a day.

Some of your aches and pains could be lupus pains, which are often more pronounced with each prednisone drop and can last for a few weeks.

With the stress you're under though, I think you need to address the prednisone dosing with your rheumy to make sure that is going appropriately and also go see your therapist/psychiatrist to help deal with the lot of emotions that are arising from the combo shot of your own illnesses combined with your mothers deteriorating health.

What a tough time for you...

(((hugs)))
 

·
Registered
Joined
·
123 Posts
Hi Sunny,

Sorry that your life is particularly stressful at the mo.

For me I would go with a 2 pronged attack.

Firstly, get in touch with either your Rheumy or local doc and check that there isn't anything going on. I totally trust you know your body and how you react to stress but with Lupus our bodies do sneaky things and it is worth getting any blaghness checked out IMHO.

Secondly, how have you dealt with your anxiety disorder in the past? Have you spoken to a therapist or another specialist. Is it worth getting in touch with them to see if they could help you out again now?

That way you have all bases covered so you should be sorted.

Keep in touch and let us know how things are going.

K
 

·
Registered
Joined
·
5,267 Posts
Hi Sunny.

I am sorry to hear that you are having these problems. But I kind of thought what Maia said. About the pred dropping dose and the every other day thing. I would definitely make sure that you are taking the appropriate dose. I just know that not taking the right dose could mess with the mind and maybe giving you more of the anxiety and worried feeling you are having.

Also, I can understand where you are coming from saying hypochondriac wise... I think when we see someone so close to us suffering and in hospice, we know that the one we love is going to die. It is a very hard thing to watch and very emotional. We realize that death happens to all us of and sometimes your mind can wonder off. Perhaps that you are experiencing the death realization and having fear about something drastically wrong happening with your health and you being where your loved one is. I am not sure if I am explaining it all the way I mean to say it. Just that what you are going through may be somewhat normal and perhaps your medications are adding to that effect.

It would be good though to get some counseling, for your anxiety, your worries and for what you are going through with your Mom. It is a very had experience what you are facing. I will keep you and your family in my prayers.
 

·
Registered
Joined
·
1,018 Posts
Are you on any medication for your anxiety? I couldn't handle it without my Paxil. I'm anxious enough about everything going on WITH it, without it I know I would be a nervous wreck.

Its easy for us to think we are hypochondriacts (or for others to think it) because we have so many odd aches and pains. And it happens often enough that they lead to a real problems that we have to listen to them, we can't just ignore them. That doesn't mean we are though. Maybe if you could take each pain that sends you thinking of a major problem, look that problem up on the internet (being careful to use REPUTABLE sites) and then list all symptoms of that problem and which ones you do or do not have. And keep track of all your symptoms for a week, checking them against the list. With luck, you will convince yourself you don't have what you are worrying about. Keep the paper work and each time you start worrying, refer back to it. That's the only thing I can think of, I hope you feel better soon.
 

·
Banned
Joined
·
808 Posts
Many hugs Sunny

I think it would be strange if you weren't feeling anxious at this time, you are going through such a hard time, and with the drop in pred as well, I would think its hard to work out what is going on.

I guess the only thing that I would suggest is that you make sure that you keep talking, and take any help available to you.

Much love and gentle hugs to you xx
 

·
Registered
Joined
·
1,485 Posts
Discussion Starter · #9 ·
Thank you for all the kind words. I've been such a basket case. Before starting this post I put my "symptoms" into one of the trusted online medical sites. The results were positive for three or four deadly and incurable diseases. Fortunately, all but one of the troubling symptoms are gone, leaving me with just my "normal" bad lupus and Sjogren's symptoms going into a nasty flare. And one other nagging thing that may be caused by a new sewing machine that sits higher than the old one. I got myself a cushion and if that doesn't help then I'll see the dr. in a bit.

Yes, I'm coming off the pred fast. Dr. said to. He said he was very concerned about the way my body was reacting to the pred this time. The hump at the bottom of my neck wasn't just prominent this time. Within three-four weeks of going back on the darned stuff, I had a massive hump that left me unable to bend my head back. I couldn't look up much at all. And, the weight I gained was showing up in big rolls and knots all over my body. Not the normal kind of fat roll. I can't explain, other than I was looking like some kind of troll. And everything that could possibly get infected was getting infected. Yuck. Little cysts of the kind that lurk under everybody's skin undetected suddenly were .... detectable. Big, nasty and painfully detectable.

I am hurting a lot. All the time. But I'm not running a constant fever anymore. Fatigue is a huge problem for me. I'm fighting it hard. Regular exercise doesn't lessen fatigue, it just puts me in bed. Regularly. I'm going to see the new rheumy soon. He may have insight or want to try new meds. Or he may just tell me I'm not really sick and have no reason to complain. I'm prepared for that, too.

Anyway, thanks for caring and letting me know. You are all dears and I'm lucky to have you in my circle of friends.

Sunny
 

·
Registered
Joined
·
198 Posts
Im sorry to hear your mother is in Hospice. WHen my mom died 1 1/2 years ago I went into a bad flareup. Actually while she was sick the flareup started and I denied getting sick with Lupus because I had to be with her. I ended up on high prednisone for 6 months then on a low dose for another 3 months. I now take 5 to 10 mg a day maintenance dose. My rheumy tells me to try to wean, but the day I do, the Lupus starts to creep back into my life. I have not been without a flareup or stable between flareups since I was diagnosed except for 2 months last summer I forgot I was even sick. I take so many pills a day I feel like a drug store. Take care of Yourself!! Take Time for Yourself!! Maybe you need the prednisone more than ever now. Have you discussed with your rheum. doctor about your mother and the stress?
:grouphug2:
 

·
Registered
Joined
·
594 Posts
Hi again Sunny,
I am really sorry about your mum, it must be very diffficult and e,otional right now, i am not surprised you are feeling so awful.:hugbetter:
My pred drops happened every seven days and each time it really hit me hard, i was in alot of a few days and then it started to level out a bit.
I would definately recpmmend having the dose reviewed by your doc.
Take Good Care
I really hope you can get sorted out and get a bit more stable.
I know how tough it is to suffer with pain so i really do feel for you.

Good Luck

Cassie:)
 
1 - 11 of 11 Posts
Top