Fatigue and exercise

[Roselover]

I just read through the exercise posts. I am amazed that some of you can ride bikes etc. I have such debilitating fatigue that some days it's all I can do to get up and put some dinner in the crock pot for my family. I can sit up for about and hour before all energy drains out of my body. Some days, I can hardly make myslef lift my teacup (that's when I know I am really bad! )

So my question is, does this mean that I just haven't found what is helpful for my POTS, or is this sever fatigue due to something else???

I do some stretching in warm water, but have lost lots of my flexibility. If I am having a good day, I do some gardening which stetches and strengthens my muscles, but as for exercise, I just don't know what I can do that won't cause me a total lack of energy the next day. I have assumed I have to get the POTS under control first, but maybe not.

Any advice or personal experiences would be appreciated!

[DSM3KIDZ]

I have been sick for 8 months . The last 6 were debilitating nausea so I pretty much did nothing. I'm what they say deconditioned. Lately I've been walking 1/2 a mile and I'm exhauseted. I think I need to build up my tolerance again. But everyone keeps suggesting that I start with yoga since it stretches the body and destresses the mind. I haven't got my fanny up to do it yet but it's just an idea.

dayna

[MomtoGiuliana]

I have been where you are, and I know how you feel. It is not possible to exercise in the normal sense of the word, when you are that weak with POTS fatigue and trying to push yourself may result in additional setbacks. A SLOW, stepped-up plan for exercise is the best approach, based on my experience. Have you been to a physical therapist, btw? I didn't, but some people do find that very helpful if the therapist understands POTS.

It is important to move every day and this probably means pushing yourself. Otherwise you will just become weaker due to deconditioning. The fact that you are doing some gardening is good! You do have to find what your tolerance is, and not push yourself beyond that. What I did was start with gentle floor exercises, once a day, if I could manage it. I never got a reclining/stationary bike, which is what is sometimes recommended for recovery, but I would just lie on my back and "pedal" in the air, for 5 minutes, then 10 minutes then 15 minutes. This was over a period of weeks. Eventually I started slow walking, then brisk walking. Now I still walk every day, do yoga nearly every day. I'd like to now move into more aerobic exercise.

Of course, talk to your doctor before starting an exercise regime. But, if your heart etc have a clean bill of health, other than POTS, exercise is safe, and really important for recovery.

Take care,

Katherine

[funnyfrog]

Hi - I can sympathize with you about the fatigue - I get about 13 hours sleep each night and a nap for about 1 1/2 hours during the day usually and I still have no energy, but I have been forcing myself to go for a leisurely walk, although I do my walk around my townhouse community as slow as a turtle. I cannot walk too fast because I get dizzy,out of breath and my heart rate shoots up and bp drops, even on lots of meds from the POTS, but a good slow walk seems to help me feel like I am accomplishing something. I may not be getting in shape, but atleast it helps the deconditioning in the muscles from all the laying around and sleeping I have been doing the last 3 years as a result of this condition, along with MVP and EB Virus. Also, some people on this forum have said that Pilates works for them. Maybe a rowing machine or exercise bike or something you can do while sitting would help- I am going to try to work my way up to a few minutes on an exercise bike slowly once I feel better with the walking - Since the weather just started getting decent here, I have only been doing the walking for a short time. Have a good night. Beth -P.S.-I think I am ready for a nap now(only kidding!!

[KathyP]

Dear Roselover;

Katherine and Funnyfrog have excellent ideas here!!!! Start low, baby steps. But you have to keep moving.

I was on the couch for the month of January. The only excercise I was getting was going to the bathroom and then back to bed. My husband did everything for my kids. I was so fatigued and totally drained.

I began moving little by little. Now I make it a point to at least go outside for a walk. The better I feel the farther I walk each day. I may feel very tired but I feel like I am getting back to something more normal.

I love to garden too. Within the last few weeks I realized what hard work it is, but I keep doing it even if it is a little bit each day.

One thing I have to mention is about 2 1/2 years ago I had a hysterecomy. Since then my POTS and fatigue was getting worse. Recently I had my hormone levels checked and my doctor found that some were very low, especially my estrogen. I went back on the replacement patch and find that I have more energy. So if this may be an issue for you, it may be worth it to look into.

Don't get discouraged!!! You will find what works best for you. The main thing is to keep moving and drink lots of water. Take care!!!

KathyP

[LindaJoy]

Hi, everyone. Just a note: I've read a lot of the threads here, and I've seen where many POTS people were very athletic until POTS hit them. I was the same way. For years, I was into Tae Bo, aerobics, biking, walking, stretches, volleyball, weight lifting (heavy lifting). Now, I'm lucky to be able to lift my butt out of a chair. I tried a few stretches today, along with some light hand weights (3 pounds), and my heart sped up to 120 bpm, then went irregular. I know that exercise is important, but it is so hard to do when your body just won't cooperate! When I'm walking outside and I get out of breath, I feel like I have to make excuses to my neighbors--"I'm really not in as bad a shape as this looks." Then, they look at me like I'm pathetic. Oh, well. As someone said the other day, we POTS people can live life, just at our own pace!

Hang in there. Blessings to all,

Linda

[funnyfrog]

Hi LindaJoy - Once you have this disorder for a while(I have it since March'02),you come to a point of acceptance and of not caring what others think about you - Atleast in my case, I am so thankful that I can make it around my block, even though I move at a snails pace, because 3 years ago at this time, I was in a hospital, hooked to IV's and feeding tubes and how far I have come - Before I got sick I had a great f/t job working for the State, had a very active lifestyle and was able to move pretty quickly - But you know what? I never took time to slow down and smell the flowers and appreciate all the beautiful things going on around me, so maybe this was God's way of slowing me down and showing me what is really important in life - Believe me, on my sl..oow walks now, I look at flowers on the lawns, birds,squirrels, and have actually met some of my neighbors. If I was walking at a pace that I would if I was healthy, I would probably not notice all that, be listening to my walkman and speed through the walk. I've had plenty of time to come to see that this in a strange way has been a positive experience - I wouldn't wish my symptoms on my worst enemy, but the lessons I have learned and people I have met on my journey since being sick are things that I would not trade for the world. I volunteer one day a week also, for 4 hours a day on an oncology floor at a local hospital. I have been doing this for 2 years, and believe me, some days I feel so sick I drag myself there, but I know that as tired and crappy as I feel, POTS will not kill me and the people that I talk to and volunteer for are way sicker than I will ever be and face their mortality,sometimes people as young as I am. I have learned so much by doing this - It helps both the patient as well as helping me still feel useful in this world - Due to all my complications right now, I am not able to have children, but there are so many people that need someone to just talk to or hold there hand during a difficult time and I love being on the oncology floor once a week for that reason . Sorry to have been so long winded, but my point of the story was, people probably aren't looking at you strange if you are breathing a little heavy or are slightly out of breath, you just may not be at the point of accepting what dysautonomia/POTS has done to change your lifestyle and until you do, you are going to care what others think - Spend what energy you have if you can congratulating yourself on what you can still do well, and if you can't walk or run as far as you used to,so what? You are still you....!! Good night! Beth ......... PS - Roselover - Sorry for replying to Linda so long on your posting, I thought maybe she might come back on here tomorrow and see it.

[Richland acres]

Hi Roselover,

I to had a hard time understanding how I was going to exercise. I started just doing little things in bed, few leg lifts, then rested, few arm lifts, rested, a few 1/2 sit ups, then rested. It was a bother to do such a little at a time, but eventually came around to more energy. I honestly am not as active as I use to be, nor will I ever be. i still have those bad days, where my recliner is my best friend, but trying to exercise when you can will help you. I also have a muscle disorder so this plays a major part in my exercising set backs.

Best wishes,

Brenda R.

[Roselover]

Thanks for all of these responses. LindaJoy, I too was very athletic before I got sick. I was playing tennis regularly and teaching preschool dance classes.

It is encouraging to hear that others struggle with this too and I appreciate the suggestions for starting slow. It feels sooooooo slow to me becuase of how active I used to be and yet I think I can embrace many of your ideas. Thank you.

KathyP, I too had a hysterectomy just last Novemeber. They left my overies, but I have wondered how I will know when to check hormone levels. I hadn't thought of my current fatigue being connected with this. I'll check with my doctor. Thanks

And thanks to all!

[MomtoGiuliana]

funnyfrog

I enjoyed reading your response. That is beautiful that you volunteer at an oncology floor. It is easy to lose perspective, more so, when you have something like POTS. It sounds like you are striving to remain grounded. I agree with you, too, that it is common to go through a stage of POTS where you feel like you have to explain yourself and/or that others view you as an oddity--but then you stop caring and learn to embrace where and who you are. Thanks for sharing your thoughts on these things.

Katherine

[LindaJoy]

Funnyfrog, I read your entry and am now in tears. What you are doing is so selfless. What a beautiful heart you have. And, thank you, everyone, for sharing your stories here. You've all made me feel like I'm not alone, and that has been the best thing to happen since I developed POTS. You're all such a blessing to me.

Roselover, thank you for allowing me to add and receive on your thread. I hope this finds you doing better. Blessings, everyone.

Linda

[funnyfrog]

To LindaJoy & Katherine/Extra Special Mom to Guiliana & Roselover: First, LindaJoy, I am sorry I put you in tears and if I sounded so long winded - sometimes I start and can't shut up-I meant well and hope that I didn't say anything that upset you - If I did, I am sorry ,please forgive me!!, Katherine - I love reading your posts all the time - they are so insightful and I marvel at what a great person you sound like as well as being such a great mom too - I have learned alot from you since joining this forum, you are a truly special person. Roselover - What can I say - Sorry for honing in on your postings - feel free to knock in on mine when I post a topic any time you want!!!!!!!!!!!!!!! I hope you got a breath of fresh air today as the weather is so nice today, atleast here in NJ it is. Thanks again everyone for being there!!! Love, Beth

[LindaJoy]

Funnyfrog, the tears your entry left me in were because I know the pain you are going through with this condition, and yet you continue to give of yourself, what you have left, to others. What a beautiful thing you are doing. I feel so selfish compared to you. I haven't even tried to drive since my POTS started acting up the first week of March because I feel so terrible most of the time, and here you are, dragging yourself to the hospital so you can support other people. You're an inspiration to me.

Blessings, Linda

[funnyfrog]

Linda, Thanks for saying that, now you have me teary - When I first came home from the hospitals at the end of July,2002 I didn't drive for about 5 months-I looked at my car in the garage every day and it made me sad that I felt so dizzy and bad that I couldn't even drive - I felt so useless - It took time till I was able to drive and even now, I only drive locally, to the hospital to volunteer once a week and back and to Drs. appts or right here in the neighborhood- My Dr. lets me do this, but there are days when I know my limits and if I am not up to driving I say, well, tomorrow will be a better day and I don't get crazy over it. Have a great night. Beth

[morgan617]

I am amazed and thrilled for what some of the people on this site can do. (Unfortunately I get a little jealous too ) I have such a low exercise intolerence, that my physical therapists won't even let me do exercises yet. We are just working on trying to get muscles and ligaments loosened with very slow and easy stretches that they do. What a weiner! Man I used to work 12 hour shifts hauling around 200 pound guys. Talk about a lifestyle change shock So I know just what you mean. They told me it didn't take long for me to get this way, but it is a long road to improvement. So I just take it one day at a time. I can only do this and that's the way it is. I can no longer ask more of my body than it can give. That's probably part of what got me here in the first place....morgan