Fatigue and exercise...

Hi everyone, I haven't posted in a long time... after my ITP diagnosis in 2000 and 4 1/2 years of WinRho, I had a splenectomy in 2004 and had counts of 60-110 for 8 years, although with every illness or stress I'd dip into the 40s-50s or so. Suddenly last fall my counts plummeted to 17, then 11. I was put on 60 mg prednisone, with a long taper down to 20. I had an awful virus in November and my doc put me back on 60 mgs, tapering down over 5 months. After that I had a weird immune system crisis called erethema multiform, evidently caused by a reaction to walking pneumonia (masked by the prednisone). Anyhow, I've been hovering around the 20s-30s without any meds, but am tired and bruising, with occasional nosebleeds. My doc is talking about Rituximab if my "norm" doesn't improve.

My question — what about exercise? I've been trying to get back into walking, and a bit of light weights. It seems to just wear me out completely for a day or so. I really want to be healthy and exercise but it's discouraging. I'm 67 (another reason to be getting tired!) but would love to hear what others have to say. Thank you!!!

I wish I could be more helpful. When my counts were really low, it basically felt like I had the flu on a daily basis. I could barely stay awake to drive to work even though I slept for 9 hours. I would come home and lay in the lazy boy recliner all evening. I went to the zoo one day and almost asked to be wheeled around in a wheel chair because i was so achy.

i think it's great that you want to stay healthy and exercise. However, I was not able to do this until they got my counts up. I failed Rituxan, and am now on Nplate. My counts have been between 50-365 (I am all over the place and still adjusting doses) since mid April. I have finally been able to keep up with my students and work out 4 times a week on average. For me, the higher counts have made a world of difference in my fatigue levels. I feel like my life is getting back to being a normal 28 year old again.

Thank you so much for your response! It's encouraging to know that even a young person has experienced this lack of stamina and fatigue with low counts. Hope the Nplate settles down and keeps you feeling good!

I definitely have fatigue and poor endurance with low counts. I'm 62, my job as an OT in a school takes a lot of stamina. I usually can work ok but come home and rest, get extra sleep.

I do try to do a little exercise routine, it is just stretching and then some easy arm and shoulder exercise. I lift a 3 pound weight ...not much but makes me feel like I'm doing something.

Virginia,

I am very soon to be 60. My counts are usually 20 to 40. I too get tired. I like extreme sports, distance running, triathlons and the such. It is a challenge to say the least. I know the feeling that you are experiencing. My only advice is to just push through it! You can do it because you have the desire. That Virginia is 90% of the battle. It may not be as good a work out as you used to have but it will be a workout. Just do it daily! Enjoy the challenge! Also, another thing that I would suggest is to sign up for a 5k run/walk! It will be your "target"!

You are on a noble quest! And I have one more thing! Thank you getting Dru to post! I am the "baby"! hehehehehehehehe

Let us know how you are doing with it! Just go get it!

Jeffrey

Jeffrey, you are so awesome! I'm telling you, you should speak at next year's convention!

I'm constantly wondering about exercise. I got hit with ITP when I turned 30 so prior to my diagnosis I was in my 20s, was effortlessly in shape and had all of the energy in the world. That's how I remember it anyway.

I've noticed that the media promotes an idea of physical fitness being something you throw yourself into intensely, pushing yourself to a maximum point of fatigue. Picture all the Nike Just Do It ads. This mindset has been completely dysfunctional for me. I was never really athletic, but when I was younger I could throw myself around like that, exhaust myself at the gym and find myself in better shape for the effort. Now if I push myself too hard I find myself feeling flu like and exhausted for several days. Recently I was only ever so slightly pushing myself and I ended up getting some kind of antibiotic resistant abscess, I think just from contact with equipment at the gym.

I've tried doing gentle yoga and have done that for years without pushing myself too hard but now I have some kind of cyst in my wrist and I've somehow injured soft tissue in my hip. My Dr recently recommended physical therapy for the hip. I'm interested in working with a physical therapist to see if their assistance strengthening my leg muscles supporting my hip progresses normally.

Currently all I do for exercise is walk an hour a day before work. If I fall out of the routine the effort to get back into morning walks usually makes me pretty tired for about a week or two and then I adjust and feel fine. Partly the adjustment period is due to waking up earlier but any new routine is more tiring at first.

It seems impossible to gage how you're body is going to respond to how you're treating it when you have an autoimmune disorder but i really really notice the difference of how better I feel when I get some exercise as opposed to not getting any so I keep trying. Walking has been great. If I can afford it at some point I'd like to try to work with a personal trainer to help me learn how to develop an effective workout routine. Nothing extreme just practical and drawn from someone more knowledgable of physical fitness.

If I have a flare of bruising and extreme exhaustion I don't push myself to exercise anymore. That used to be more of a constant so I would try to push through it. Now I let my body rest as much as possible for a few days and that seems to help return me to my normally reduced energy level.

For now I'm just going to keep walking!

Walking is great! It has been unbelievable to me to realize that doctors don't think fatigue is part of the disease.i would tell my doctor how tired and achy I was all the time but he said I looked young healthy and great and blew me off. At the conference fatigue was a big topic and for the first time I realized I wasn't nuts. I guess my best advice to you would be just do what you can do!

Thank you, Jeffrey! Inspiring!

Thank you so much! Walking and gentle yoga are my favorite things, too. I guess it's partly about listening to my body and partly about getting into more regular light-to-moderate exercise. Pushing through, as Jeffrey says, to get to my optimum level.

I worked out today and realize when counts are good it's pretty easy for me to walk, do the eliptical and bike. I will keep doing it unless I'm having a low week. Then I will do the best I can or rest.

Valerie,

I would also suggest a variety of things. Walk on Monday, swim on Tuesday, bike on Wednesday, yoga on Thursday, weights on Friday, aerobics on Saturday, scream in pain on Sunday! lol You get the idea. I would also suggest a heart rate monitor. You can a serviceable model at wal mart for $30. Learn to watch your heart rate for optimum effort, notice I said optimum, not maximum. You should be sweating within 10 min of a workout, and your heart rate in Zone 3, about 80%. You should exercise for at least 60 minutes!

I will shut up now so I don't bore you, but if you want more info just ask!

Jeffrey

Jeffrey,

If I could only keep up with you! I'm tired just looking at that list. However I will do 60 minutes of cardio in the am in your honor!