Tired most of the time... [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

chrisTIn@

11-05-2010, 10:49 AM

Today I really had a bad day.
Tired and sleepy most off the time.

When I awoke I grabbed my laptop and read a lot on this very informative forum,
and I saw discussions about the benefits of healthy food and a non-inflammatory diet.
I even saw that some of you go to the gym to exercize.
I used to do that too, before I was diagnosed with Wegener's 4 months ago.
but now I can't seem to find the courage to start exercizing again.

The fatigue and the loss of energy is the thing that bothers me most.
Also the insecurety, not knowing what's going to happen next...
The joint- and muscle pain is still there. I hope it will go away sometime.

What do you guys think?
Do I have to rest more, or do I have to exercise more?
Or is it all a matter of balance?
And of good and bad days?
I wonder...:sad:

freakyschizogirl

11-05-2010, 10:53 AM

Sorry to hear you're having a rough time Christina.

Hope you feel better soon

pberggren1

11-05-2010, 10:53 AM

I would talk to your doc. Did this energy loss come all of a sudden or creep up on you? If you feel tired I would just take it easy and rest.

elephant

11-05-2010, 10:57 AM

chrisTIn@

11-05-2010, 11:00 AM

I would talk to your doc. Did this energy loss come all of a sudden or creep up on you? If you feel tired I would just take it easy and rest.

Thanks. I can call my doc. I have an appointment in december, but maybe he can give me some advice on the phone...

This energy loss comes and goes. Sometimes I feel good, almost like before this disease, and sometimes I feel horrible again. :glare:

chrisTIn@

11-05-2010, 11:07 AM

It's late at night here. I 'm going to sleep again.
Hope to read more tomorrow.
Thanks for replying. :sleep:

drz

11-05-2010, 11:36 AM

LIke Phil said let your doctor know. If your feeling tired you need to rest. Taking a 20 minute walk in your house or outside is good enough especially when you are not feeling well. You don't want to push it either because the WG will be wide awake. Hope you feel energized soon!

I was told to exercise till my heart rate went up to a level they determine for me and to quit when it over that rate or I felt breathless. On the exercise chart they told me not to go over 7 or 8. For me that usually took only a few minutes but they said even a few minutes was very helpful to my health and it was good to rest between exercises. They also encouraged frequent naps since they told me the body heals best when you are sleeping. If I over did the exercise I was at risk of resuming bleeding in my lungs which I learned to try avoid.

Learning the limits of your endurance is difficult and done by trial and error. Over doing it is dangerous to your health but so is becoming too inactive, especially prolonged bed rest. Your body can lose muscle tone very quickly, especially as you get older and getting it back is very slow process.

elephant

11-05-2010, 01:56 PM

That is true Drz, laying in bed all day can produce blood clots, loss of muscle tone. Exercise of some kind is important, if a patient can't get out of bed the doctor would order PT and OT. The doctors were always pushing the patients to get out of bed the day after surgery, but that all depends on the surgery and condition of the patient.

Sangye

11-05-2010, 03:09 PM

chrisTIn@

11-05-2010, 09:36 PM

Elephant, what's PT and OT?
I googled it, as I am not a native English speaker, and found that PT probably has to do with blood and coagulation, but OT? :confused1:

elephant

11-05-2010, 10:54 PM

PT- Physical therapy
OT- Occupational therapy- they work more on fine motor skills.

chrisTIn@

11-05-2010, 11:06 PM

Oh, okay. Thanks Elephant!
I called my doctor's assistant and I'm scheduled in for next week, to have a 'telephone-meeting' with the doctor himself.

I used to go to a swimmingpool nearby, to get some exercize, I'm planning on doing that again, for a start.
Thanks Sangye!

JanW

11-06-2010, 01:58 AM

I would definitely speak to your doctor. You shouldn't have to live with heavy fatigue until December, if something else could be done.

Just from the experience I have had with my ankle pain, I know that speaking up, and having my doctor increase my dosage of mtx made a world of difference, and I wish I had done it sooner.

chrisTIn@

11-06-2010, 06:40 AM

Thx JanW. Today I feel a little better already, not as tired as yesterday, and a lot more energetic 'spiritually' so-to-speak...
It's an on and off-thing, this fatique.
But I'm glad I made that appointment. I'm gonna prepare for it, write everything down that I want to ask, and concentrate.
Then a telefonic consult can be very valuable, is my experieince, especially with smart and nice doctors. :smile1:

manalolana

11-06-2010, 08:27 AM

Hi JanW,
Curious, I understand that MTX dosage is pending on your body weight. How much do you take and frequency?

I had a sinus infection so was on antibiotics for about 3 weeks and now just getting back on MTX injections. Just had my second shots today. MTX makes me more tired... for a few days. Do you have the same side effects?

JanW

11-07-2010, 02:52 AM

I am lucky in that I have had no side effects from mtx, which I take orally. However, my doc said specifically that it is not dosed by body weight (I asked). Most people get somewhere around 20 to 25 mg for RA or WG (or the other AI diseases it is used for). I have heard of lots of people on here having side effects although my doc says most of his patients are just like me. That's why patients like mtx and docs like to give it -- convenient dosing and few body changes from it. I've been on it since March.

manalolana

11-07-2010, 06:39 AM

Aloha ChrisTin@! I hope you are feeling better today! I have been told to listen to my body which I often need an interpreter; I have a hard time filtering if i am being too cautious or need to rest.

I used to work out in the morning to get me going for the day before getting ready to work, work about 10-12 hours and hit the gym again for more endorphin :) Now, it's a vague dream.

One habit that I still have kept is my workout log. I now just add how I feel each day. I know it's hard but I also try to go to the gym almost every day if not to work out, to stretch in dry sauna to get my muscles flexible.

As for food, I don't know if it is related or not but I am now allergic to gluten and have a hard time digesting meat that I have been pescetarian for about a year. I thin kin general, avoiding high sugar and any preservatives is healthy. There is a book called "You are what you eat". If you go to a book store, check it out. It's a good reading.

drz

11-07-2010, 08:00 AM

Elephant, what's PT and OT?
I googled it, as I am not a native English speaker, and found that PT probably has to do with blood and coagulation, but OT? :confused1:
Occupational therapy and physical therapy. The first works on daily living tasks like self care and the second to increase or restore body strength and flexibility. Most rehab programs have a large dosage of both.

chrisTIn@

11-08-2010, 02:58 AM

Mahalo Manalolana!

Your remark about sugars reminded me of the fact me that I 've been eating WAY too much cookies lately... :blushing:

Hammy8241

11-08-2010, 06:01 AM

Mahalo Manalolana!

Your remark about sugars reminded me of the fact me that I 've been eating WAY too much cookies lately... :blushing:

Is that bad??????:sad:

Jack

11-08-2010, 07:31 AM

Cookies are classed as one of the essential food groups. :drool:

elephant

11-08-2010, 10:24 AM

Yes, it's on the tippity top of the food guide pyramid!:biggrin1::flapper:

Sangye

11-08-2010, 11:19 AM

No one can dispute such sound science. :rolleyes1:

drz

11-08-2010, 01:05 PM

Cookies are classed as one of the essential food groups. :drool:

I find they work real well when my blood glucose is down to 60 at 3 am. They are as good as glucose tablets and easier to take too. I think everyone needs to keep a dozen on hand for those lows when the prednisone wears off. Just remember though like all essential meds be careful not to overdose.

Geoff

11-09-2010, 01:06 AM

Re the above..."Great minds think alike"?........I'm cracking up here with laughter!:lol:

chrisTIn@

11-09-2010, 02:57 AM

I find they work real well when my blood glucose is down to 60 at 3 am. They are as good as glucose tablets and easier to take too. I think everyone needs to keep a dozen on hand for those lows when the prednisone wears off. Just remember though like all essential meds be careful not to overdose.

Thank you very much for this thoroughly documented experimental contribution. :smile1:

julia

11-10-2010, 04:34 AM

See if there's an indoor pool near you. Even if you're having pain, you can do lots of aquatic exercise without increasing the pain. Just walking in water helps you keep flexibility, range of motion, circulation and strength. The deeper the water, the less work.

Above all, don't push it. And if pain increases after you exercise, back off or find a different type.

I totally agree with this. I always feel better after water exercise. I have tried using the treadmill but can not do it for very long. I have stayed in the water for 1 1/2 hrs. and felt great, looked like a prune but felt great.

elephant

11-10-2010, 11:56 AM

I must have a really bad cold or infection could not walk 2 miles.

Sangye

11-10-2010, 02:57 PM

Did you start on another antibiotic yet? I'm worried about you, Elephant.

chrisTIn@

11-10-2010, 11:39 PM

I must have a really bad cold or infection could not walk 2 miles.

I sure hope you feel better today, Elephant.
And if not, that you 'll get the proper medical care...

elephant

11-11-2010, 03:45 AM

Yesterday I decided to take Bactrim DS twice a day, if I don't feel better by tomorrow I will call the doctor. My daughter has a cold , so I am wondering if I have a virus too.

Fran

11-11-2010, 04:57 AM

Elephant,

Look after yourself and hope you feel better soonhttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

DEE

11-11-2010, 05:31 AM

Elephant hope your feeling better soon take care of you DEEx

elephant

11-11-2010, 08:05 AM

Thanks guys, I am not worse today...so that is a good sign.

Geoff

11-12-2010, 01:01 AM

Lots of Colds going about at the moment Elephant. Hope you are "weathering the storm". Get well soon. :smile1:

elephant

11-12-2010, 02:27 AM

Thanks Geoff, My sinuses are producing less yellow today. My son is blowing alot of yellow. Can't win!

Sangye

11-12-2010, 03:57 AM

Glad to hear you're doing better, Elephant. :smile1:

DEE

11-12-2010, 04:19 AM

Elephant good to hear you doing better :thumbsup:

Geoff

11-12-2010, 04:35 AM

Dont forget to keep those hands clean! I've nearly gone thru a whole bottle of Hand Gel sitting in the office this week.

elephant

11-13-2010, 12:58 AM

I feel slightly better every day....but my son is feeling worse. Hope he doesn't have a sinus infection. He had no fever, so I sent him to school.

chrisTIn@

11-15-2010, 07:37 AM

I still take Bactrim (Co-trimoxazole) twice a day, and no other medication at this point.
The tissue in my nose is pretty good right now, (no bleeding and no crusting...)
only sometimes it feels a bit 'dry'.
I searched the internet and I found a pretty good salve,
that I bought at the local chemist's.
I also found nosedrops, based on salt water, that are soothing.

The fatigue and jointpain seem a little better by now,
but I hope to speak to my doctor soon, to talk my symptoms over,
and to see if there something else I can do myself.
I will also ask his opinion about alternative therapies and Wegener's Granulomatosis.
(My thoughts on this are: alternative therapy can help as a supplement to the regular treatment,
but it can never replace this...)

manalolana

11-15-2010, 12:11 PM

elephant! Hope your kids are you are feeling better!!! Warmest Aloha!

elephant

11-15-2010, 12:59 PM

Thanks, I think my son is feeling better, but he will say he is fine and then have a bucket of snot of all sort of colors...

Sangye

11-15-2010, 01:24 PM

ROTFL at that description :laugh:

pberggren1

11-15-2010, 04:27 PM

Thanks, I think my son is feeling better, but he will say he is fine and then have a bucket of snot of all sort of colors...

Oh yes, the old bucket of colorfull snot!:laugh:

chrisTIn@

11-19-2010, 07:56 AM

Still a bit tired, but not too much.
The appointment with my doc is delayed, but I'll get by.

I wish everybody on this forum strenght.
Keep on fighting for your health, but stay close to your personal goals. :wink1:

Lightwarrior

11-20-2010, 03:23 AM

Elephant, what's PT and OT?
I googled it, as I am not a native English speaker, and found that PT probably has to do with blood and coagulation, but OT? :confused1:

ChrisTIn,
PT stands for physical therapy and OT for Occupational therapy. I agree with Elephant and Sangye, a pool would be great and you have to get enough exercise so blood doesn't pool. Be careful about pushing yourself, if you are tired all the time you need rest. I pushed myself way to hard and paid for it by taking almost an entire year to hit my first remission.