tiredness

[JOJO19551]

I have scleroderma (crest) and only diagnosed this year.  It seems like I have no energy.  Everything I do is a chore.  I am still working full time but have to push myself to do this.  When I go home from work I have to lie down for a short period of time.  When I get up in the morning, I am tired after getting showered and dressed.

I am taking minocin, 2 times per day.

Is this normal to be so exhausted?

Thanks,

JoAnn

[JBJBJB]

JoAnn,

I have same problem — tired very easily. I look “normal”, but I get tired very quickly. I am off for the summer from May to August. When I work, I work from 8:30-2:30, getting to work in the morning is a drag. My Raynaud's really bothered me big time in the winter morning. After I get back from work, I had to lay down for 10 minutes, then I had to get up to go to my son's school to drive him to golf course, half hour later, I had to pick up my daughter from school bus stop. Then I started to cook dinner. After setting up the table and putting all the food on the table, I had to lay down again, I don't have any energy to any more things.  I also have this flue like feeling in my sinus when I am tired.

My family expects everything to be done from me like I used to do before my dx. My husband is a very busy person, travels a lot, too… It's very hard on me.

This month I feel like I have more energy. I also don't have Raynaud's problem when it gets warmer. This perhaps because of the sun? I am well rested? Or AP works?

JB

[JOJO19551]

Thanks for the info, JB.  I am curious how long you are on the Ap?  I always was very energetic so this is very frustrating for me.  Last October I did the 60 mile breast cancer  3 day walk!!  Amazing how a few months can make such a difference.

Thanks again,

JoAnn

[JBJBJB]

JoAnn,

I went to Iowa to see Dr. S on April 22nd of this year. He put me on Clindy IV for 5 days and now I am on Minocycline 200 mg daily. (see my story) http://www.rbfbb.org/view_topic.php?id=340&forum_id=1

I was dx only a year and half ago. I am going down hill FAST. I used to do five things at the time and went to swim three or four times a week (44-45 laps each time)…working, taking care of the kids and family, church involvements, after 9:00 PM, I'd do all my research, literature reviewd, statistics programming and so on until mid night. Now I am feeling like a 80 years old lady!!!

I sure hope this AP will give me some energy back. I don't want to quit my job. I'd go nuts staying at home. :crying: 

JB

 

[JOJO19551]

JB, Have you seen any relief from the AP?  I am only on minocin for 50 days and I can't see anything yet.  I am also getting puva, a light therapy.  The dermatologist said this helps to break down the thickening of the collagen.  I think this is helping.

Youn sound just like me with the activity level, before and after.  I also feel 80.

My husband is being discharged from the hospital today after having a total knee replacement.  I have no clue how I will be able to do everything.  One day at a time.

JoAnn

[JBJBJB]

I don't have any significant improvements yet. Now when I yawn, I still feel tightness of my air pipe, not as severe as I used to…. AND I have to cough after I yawn…. right after my Clindy IV, I could yawn easily without coughing….

My hands and fingers seem to be very swollen comparing to before the AP treatment. I believe this is due to I weaned off prednisone before I went to Iowa.

My mood is very depressed after I am on AP. I've been trying to stay positive, but it seems I get sad very easily…. like when I had lunch with my 83 year old senior friend, Dorothy, I got depressed thinking, I would never be able to live that long and be that healthy…..

I have rash on my hands just about one week before I started AP and now it's been on and off. All the rash are in the area where my swollen area are. Very itchy!!! I thought it was food allergy…. 

Oh one more thing…. I noticed several new black moles in my neck, arms, and face….my teeth starts getting a little dark, my hands and face are all dark brown…. I look green and dark…. like island native in Hawaii…. :doh::sick::sick::sick:

 

   

[JBJBJB]

[user=514]JOJO19551[/user] wrote:

My husband is being discharged from the hospital today after having a total knee replacement.  I have no clue how I will be able to do everything.  One day at a time.

Oh my…. I sure hope you will get some help. Do you have church you belong to? Could you call them up to help you out? Actually I never want to bother those Holly People myself. Every one is super busy. I always tried to manage everything…. if I really cannot do it, I get some college kids to drive my kids and pay them each time.

I pray you can pull it through. Yes, we have to live one day at a time and thank God we are still alive and kicking. :roll-laugh:

[JOJO19551]

JB, Maybe you should see a dermatologist.  I see a dermatologist who specializes in connective tissue diseases and she has been very helpful.  My hands are not as swollen as they use to be.  I have more movement of my fingers.  I still can't wear my wedding rings but am hoping to some day.

My skin looks like i am 80 and I am only 51.  The light therapy is giving me a tan so I look like a healthy little gal.  My joints hurt from head to toe.  I want my old life back.

I am also depressed, I cry every day right now.  We just have to hang in there as everyone tells us.  Keep hanging, JoAnn

[Kim]

Hey JoJo and JB,

Depression kind of goes with the territory.  By definition, having your life derailed is depressing.

You both mention you are on 200mg daily Mino.  I started on that dose and felt much like what you are describing so I switched to pulsing.  The pulsing, 200mg MWF, and every other Friday, we substibuted the Mino for Zith,  was the oral combo that worked the best for me.  This combo left me with more energy, yet slow steady improvements.  Also more gut-friendly, regarding yeast issues. 

Everyone is different so you may want to experiment with the dose and see if you feel better.

Good luck…….kim

[JOJO19551]

Kim, Thanks for the information on dosing.  I am going to the doctor next week; I will ask her about this.  I actually have no problems with my stomach, which is one good thing.  So, is it the antibiotic that makes you tired or the disease itself?

Thanks,

JoAnn

[JBJBJB]

JoAnn,

I know exactly what you are talking about. I don't cry, but I am angry, feeling helpless. But I am hopeful. I do believe in AP. When I saw Diane/WI and Richie's stories, it keeps my hope high.

Yes, that's a good idea to see a derm. I tried not to go to see docs these days. It makes me depressed. I had not seen doctors during the past 15 years!!! All of the sudden, it seems like I see different docs every other week.

Next week I will go to IUPUI to see a pulmonary specialist. Then I will go to Northwestern, IL to see Dr. Varga who is scleroderma specialist. I am still wondering if I am heading to scleroderma…. so Dr. Varga might be able to tell me.

Kim,

I will keep the pulsing dosage method in mind. I do want to do pulsing since I notice I may start to develop some stomach problems….  

By the way, I was an amateur carpenter, just loved to do woodwork for fun. I replaced all the windows and doors in my old house and built a double sink vanity….. Now I cannot pick up a 2X4 lumber without sharp pain on my joints. I collected all kind of Mikita saws. Now they are all sitting in my garage. I just hired a real carpenter to trim all of our new house windows which I had planned to trim them by myself. I may eventually sell all my saws.
:crying:

JB

[Goodwife]

JOJO,

Hi, my hubby was dx w/SD Aug 06.  Prior to dx, he was constantly fatigued, and like you, always had TONS of energy, nonstop.  Depression also set in after dx, more attributable to the dx than a disease symptom itself.  He has been on AP 18 months now.  Not much changed until  5-6 month mark.  The first thing to improve was his energy level, so don't give up hope!  I have to agree with Kim, that with my hubby, the pulsed dosing was better for him than daily.  Everyone is different, though.  Good luck to you and although it is difficult now, I think you will begin to see slow steady improvements in the next couple of months.  Good luck,

Goodwife

[kramstine]

[user=514]JOJO19551[/user] wrote:

Is this normal to be so exhausted?

Hi joann,

I have had diffuse SD for almost 8 years now and with it lots of fatigue. More and more as the disease has developed. But after starting AP I

[GJH]

Kim,

How much Zith do you take when you substitute it for Mino? 250 bid?

Thanks, GJH

[Kim]

GJH, Yes.

[Author]

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