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cjhnsn29
09-20-2014, 03:41 PM
I hear everyone saying exercise and working out will help, I don't know about anyone else but I don't have the energy to do so. It might because I don't breath well. I am just drained. Does anyone else have this problem with there WG?

me2
09-20-2014, 04:06 PM
Hi cj,
I have had lots of trouble with fatigue and lack of energy. Not breathing well is a double whammy. Quite some time ago I was talking with Al on the Forum here and I ended up ranting about the doctors not taking my fatigue seriously. Drz recently brought it to my attention and I got quite a laugh- except its not really funny. I am doing better now than I was at the time of the rant but I still battle with fatigue even though my breathing is just fine. I hope your energy improves soon - it certainly could. I also do everything I can to eat an exceptional diet and avoid things that are not good for me. It is not THE answer , but it helps. Here is the rant for your amusement (except its not funny) :

Al
I tell them but they don't LISTEN. They hear but they don't understand.
I have been telling my doc about how debilitating the fatigue is and all he does is give me a blank look - until my last visit where he gave me some sage advice. "You should exercise 20 minutes a day"

If I could exercise 20 minutes a day and still have any energy left over I wouldn't be complaining about fatigue. I have to save my energy to do "20 minutes of laundry" or "20 minutes of housecleaning". Most days I don't even have that.
This pencil necked , noodle armed choir boy (I'm stealing that line from the Simpsons) couldn't last 20 minutes doing the heavy physical work I did for most of my life. Like stocking cabinets in new buildings up several flights of stairs. Digging ditches by hand around high voltage lines. Cutting my years worth of fire wood every year.

For recreation I did mountain climbing - real mountains (the Olympics here in Washington state). To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.
Ok, I'm mad enough now I still think I could take him on a 20 minute challenge. Problem is , I would be out of commission for several days and he wouldn't. Do you think he knows that?

cjhnsn29
09-20-2014, 04:22 PM
Hey me 2,
I am glad I am not the only one with this problem. (No offense not wishing on you). Well I believe my Dr's understand now that on top of this WG crap, I became anemic well hot damn think I got through when they had to give me 2 pints of blood. (No idea why I am drained) do you have any idea haha! I know I can eat better than I do. They only reason why I know that is I lost 41pds already. I try to stay positive and not complain and everyone always says, I don't think I could handle it like you. You are the most cheerful, happy person I know. Well what choice we have.

My biggest upset is that I worked 3 jobs when I was younger and put my self through college all on my own and now can't work anymore per the Dr's. It's aggravating when my 73 yr old mother does circles around me... Grrrr. Now he would know it (smile) sometime j/k..thx for the giggles. CJ.

me2
09-20-2014, 04:28 PM
Hi cj,
I'm glad you were able to chuckle a bit- sometimes its all we can do. I too try and keep a very positive attitude and find it very frustrating that I can't work like I used to , or like I want to. Still, don't loose hope. I'm doing better now than I have for most of the past 14 years. Who would have thought that? I think the regular Rituxan treatments are what really turned things around for me. It has been slow though.

I had a friend who was anemic and she was just wiped out. I hope that is getting under control for you as well. And congratulations on loosing that much weight!! I'm still struggeling with the battle of the bulge
after all these years of being on prednisone and I'm happy to report that I am making good progress.

cjhnsn29
09-20-2014, 04:34 PM
Me2

I am so happy u r making good progressive. I just started to get tapered off the Prednisone and was put on methrotrextate and it seems to work on my SED rate at least. When they first checked it my SED was 107 and we started the methrotrextate and it is lower than it has ever been its 87 good for me. I know it's supposed to be 0-20 . I'm getting there lol. So how long you been not able to work?

pwc51
09-20-2014, 05:11 PM
By the time I was diagnosed I could not climb a flight of stairs without getting breathless. Two months earlier I had been climbing mountains and riding my mountain bike over the hills!
My rheumy said exercise was OK but 'do not exert yourself' - a tricky definition but one measure I have heard is that you should be able to continue a conversation whilst doing your exercise.
Once treatment started I began walking - initially 15 minutes per day but slowly increased this over 3 months as I improved. I can now walk for a couple of hours over the hills before it becomes uncomfortable.

cjhnsn29
09-20-2014, 05:56 PM
PWC,

I hope I can gradually increase my energy levels. I am glad that things are going good for you. It's not like you use to do but it's better than nothing thats for sure. This is not easy having WG. But its great to hear some POSSITVE out comes like you.

annekat
09-20-2014, 06:17 PM
PWC,

I hope I can gradually increase my energy levels. I am glad that things are going good for you. It's not like you use to do but it's better than nothing thats for sure. This is not easy having WG. But its great to hear some POSSITVE out comes like you. I think we all go through this fatigue thing. It just takes time for your body to recover and recondition itself to being close to its former energy levels. I've been on treatment 3.5 years, have not been declared in remission, but just lately have felt MUCH more able to do physically demanding things without getting out of breath or overly fatigued. There is still the issue that I will feel it later in the day, I will be tired and ready for bed sooner or will need to take a little nap. All of this is normal for a Weggie.

cjhnsn29
09-20-2014, 06:44 PM
Anne,

Thanks for answering back. I believe everyone has pretty much the same problems. I have a lot of problems sleeping due to the pain in my face area. As I get to talk more to different WG people I feel better knowing that I am normal or somewhat haha! I have a lot of understanding family and friends but of course you have those ones that don't understand. I hope it gets better. I have to give it time I am sure since I just got out of hospital.

Thx again
C.J

brew22
09-20-2014, 10:37 PM
A friend took me to the local heath club for their water aerobics for arthritis .. I could hardly make the walk to get there ... Now I go on my own and love it .. the water is so freeing and it makes moving my body easy . My breathing and endurance have improved..

Also does anyone know if wegs peeps should get the flu shot???

Pete
09-20-2014, 11:21 PM
Also does anyone know if wegs peeps should get the flu shot???

Yes, my doc at Cleveland Clinic recommends I get the flu shot each year. You need to get the needle injection because it's a killed virus shot. The nasal spray is a live virus that carries a risk of giving us the disease because of our compromised immune systems. Got mine last week.

annekat
09-21-2014, 01:42 PM
On the flu shot, there are opinions pro and con. My doc tells me to get one, but then says it won't do much, so I figure why bother? I have never gotten one and haven't had the flu since I was in my 20's. Some on here have reported problems with the flu shot and say not to get it, while others say we should definitely get it, that they have done it without problems. Some feel it can stimulate a flare or even cause the flu. I don't know the answers and it is the time of year for it to be discussed again. No doubt, there is some searchable info and opinions in the archives.

cjhnsn29
09-21-2014, 02:50 PM
brew22,
I actually for the first time since having WG. My doctor allowed me to have a flu shot. This type of flu shot they don't actually put the live strand in your body. I did not get the flu "doing the dance" haha

Wegetarian
09-21-2014, 04:06 PM
I think regular excercise helped me feel better. The gym I went to has 90 steps if you take the staircase from the parking garage, at the beginning just getting up there was such a shore and well it was pretty much my workout for the day. 6 months later and those stairs and I climbed those stairs quickly :) Unfortunately after my relapse I had to go and put my membership on hold (I've understood pred makes your ligaments softer, and lifting weights could hurt you) and realised I need to take the elevator as there is no way I could get up those stairs anymore. Oh well, once a cut I has heals I'll go swimming. There is an infection risk, so didn't want to do that until I got the pred a bit lower and won't go if I have any cuts.

By the way, a rheumy told me that extreme physical activities could trigger Wegs. As an example he said someone could have a flare after running a marathon. So yeah, better not to outdo oneself.

Alias
09-21-2014, 10:20 PM
My rheum was adamant that I get the flu shot last year and again this year. To him it's a no brainer that there is no harm in it and anything we can do to keep ourselves from getting sick is good. (He also had me get the pneumovax, and after I was below 20 mg of pred, the shingles vaccine. ) One year I promptly got the flu after getting the shot (this was long before WG) and then didn't do it for several years. Then I realized that the temporal connection between getting sick and having the injection was not meaningful. It takes a while for the shot to become effective, so it's just the luck of the draw.

Wegetarian
09-21-2014, 10:23 PM
Should we move the flu-shot discussion to another thread? I think its a very interesting topic, and I don't think others will find the discussion in this exercise-thread.

Geoff
09-22-2014, 05:22 AM
Off Topic but simple answer FOR ME IS YES. I know others here on the Forum will disagree as WG sets up different parameters for us all but I have just booked mine at my local surgery and it will be the 4th year in succession.

Some people get an adverse reaction but I went on the advice of my doc, suggest you run it by him/her ASAP.

Pete
09-22-2014, 07:42 AM
I hear everyone saying exercise and working out will help, I don't know about anyone else but I don't have the energy to do so. It might because I don't breath well. I am just drained. Does anyone else have this problem with there WG?

For what it's worth: Start. Somehow. I can understand and empathize with the fatigue. When I first began exercising, I set small goals. Literally walked down to the street corner and back - barely a hundred yards on level ground. Slowly and gradually, I was able to increase the distance and then the pace until I was able to regularly walk 3 miles at about 17 minutes per mile. It took me six months to work up to this. I now do it as my "daily (almost) constitutional". This has helped me maintain a BP of about 120/80, a resting pulse of about 60, and lose 7 pounds over the past nine months.

drz
09-22-2014, 02:30 PM
For what it's worth: Start. Somehow. I can understand and empathize with the fatigue. When I first began exercising, I set small goals. Literally walked down to the street corner and back - barely a hundred yards on level ground. Slowly and gradually, I was able to increase the distance and then the pace until I was able to regularly walk 3 miles at about 17 minutes per mile. It took me six months to work up to this. I now do it as my "daily (almost) constitutional". This has helped me maintain a BP of about 120/80, a resting pulse of about 60, and lose 7 pounds over the past nine months.

WOW! That is real amazing and impressive to me. But then my goal for the first three months was to be able to get out bed and walk to toilet ten feet away by myself without help or supervision. I reached this at 3 1/2 months. Three years later I can walk a mile slowly on level ground, some times even without a rest break along the way.

Sangye
09-23-2014, 05:28 AM
Regarding exercise, yes, do as much as you can without hurting yourself. If you're on pred be careful, as it makes you more likely to rupture tendons and ligaments, and high dose pred will make you feel as if you can do much more than you really can.

Regarding the flu shot, personally I wouldn't touch it with a 10 ft pole. I know 4 people in this group alone who can directly trace the onset and/or severe flare of their Wegs to the H1N1 shot. Vasculitis is listed as an adverse reaction on that shot. Autoimmune disease is listed on the flu shot. Mercury is still in the flu shot, as are a number of other known carcinogens. I've been immune-compromised since 2006 and have never had the flu in that time, while many "healthy" people around me who annually line up for the shot have had flu and they get severe colds every year. I recommend that you do your homework as you would for any other medical treatment.

Here's an article written by an MD from MIT and Cornell about the flu vaccine.
A Shot Never Worth Taking: The Flu Vaccine ~ by Kelly Brogan, MD | International Medical Council on Vaccination (http://www.vaccinationcouncil.org/2013/11/27/a-shot-never-worth-taking-the-flu-vaccine-by-kelly-brogan-md/)

mishb
09-23-2014, 08:25 AM
I personally will be telling all of my friends not to go mountain bike riding
I have seen many people on here who "used" to go mountain bike riding but now can't because of Wegs.
It's becoming more apparent to me - that wegs is caused by getting on a bike :flapper:

In regards to the exercise thing, I agree with Sangye and just do what you can. Move your arms, move your legs, lift your legs etc - which can all be done from your bed or chair if need be.
Walk ten steps, walk twenty steps........you know what, at least you are moving and hopefully, it will get better.


In regards to the flu shot - my rheumy put it this way "why would you want to put more chemicals into your body, than you are already putting in there - you have enough going on at the moment"
I agree.

Sangye
09-23-2014, 08:26 AM
WOW-- I love your rheumy. :thumbsup:

me2
09-23-2014, 12:04 PM
While we are talking about exercise... I want to second the caution against over doing it if you on long term prednisone. I have been on prednisone for 14 years. Sometimes very high doses. Recently I had a calf muscle in excruciating pain. Something snapped inside. I got an ultrasound and they could find anything. Which is good, because that means it wasn't a real big injury. That doesn't mean it didn't hurt. I wasn't even over doing it. I was just walking along and was instantly in terrific pain. I was on crutches for a while. I HAVE healed up and can walk around without pain now but I'm going to increase my bodily stress very gradually.
My Rhuemy said my injury was likely due to prednisone.
I have not had a flu shot maybe ... ever.

mishb
09-23-2014, 07:55 PM
While we are talking about exercise... I want to second the caution against over doing it if you on long term prednisone. I have been on prednisone for 14 years. Sometimes very high doses. Recently I had a calf muscle in excruciating pain. Something snapped inside. I got an ultrasound and they could find anything. Which is good, because that means it wasn't a real big injury. That doesn't mean it didn't hurt. I wasn't even over doing it. I was just walking along and was instantly in terrific pain. I was on crutches for a while. I HAVE healed up and can walk around without pain now but I'm going to increase my bodily stress very gradually.
My Rhuemy said my injury was likely due to prednisone.
I have not had a flu shot maybe ... ever.

Those calf muscles are a killer - mine actually torn and the bruise came out so black and stayed for 4 weeks.
That was at the end of May this year and it still hurts.
Definitely be careful



Sangye, I loved her as a Rheumy - unfortunately she got rotated out of rheumatology and is now in what she thinks will be her calling of Immunology.

Carmen11
09-25-2014, 01:44 PM
What is your diet plan ?

Wegetarian
09-27-2014, 08:45 AM
I think someone mentioned to me that Pred makes the calf muscles shorter. Haven't read that anywhere though, so dunno about the accuracy of that. Streching would probably be a good thing for all of us.

To get myself motivated to excercise I got myself a laziness tracker, a Fitbit Flex (http://www.techradar.com/reviews/gadgets/fitbit-flex-1124344/review). i guess the correct term is activity tracker, but dunno... Wanted something to motivate me to move more, as I wasn't allowed to do anything else except some light walks when I got out of the hospital.. I probably mentioned this before though. Anyway, it tracks my steps and if you remember to put it into sleep mode at night it will also track how long you slept. You can use the app on your phone to mark other excercise, and for instance what you have eaten (if you set a goal for yourself if will subtract the amount of calories you have burned from the ones you have eaten).

I can see this info then on their webpage, like this is my Monday and how many steps I took:

http://content.screencast.com/users/temporaryfolder/folders/Jing/media/6137108c-0785-4e7e-bbec-e1706736a1bd/00000081.png

So I woke up at midnight and 4 am, and looks like I took a nap around 16:00.. As I said its my laziness tracker :)

aewaustin
09-30-2014, 12:09 AM
For fatigue make sure to check your ALP and b12 levels, if they are low then one factor could be that you are not absorbing nutrients. I have found that my body does not absorb food and that is adding to my fatigue. Many folks with autoimmune have these issues. Mine are because i am eating foods that cause my gut to act up. Just had the Alcat test done so finally know what foods are affecting me.

brew22
09-30-2014, 12:43 AM
Which one do you recommend? I looked on line and there are several to choose from at different price points? Thanks!!

aewaustin
09-30-2014, 01:00 AM
Alcat is very pricey unfortunately, but I did the 150 foods and am glad that I did, which was about $500. There are random things that I react to that I am glad that they came up, and they were part of the 150. I have spent a small fortune trying to heal my neuropathy, and would have probably saved myself $1000 or more if I had done this first. Learning that foods are the first thing, if you don't have that right then you can't work on the rest. Even if I get accupunture/massage or whatever, if I still am eating something that makes me react the issues will never end.

sunnykmr123
10-06-2014, 07:08 PM
To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.