Exercise--ideas for sticking with it long term?

[MightyMouse]

Hi again everyone. I've been trying hard to keep to my exercise routine, because overall, it helps me in many ways--from stabilizing my loosey-goosey joints, to giving me a little extra stamina when I'm out and about. However, there are moments like right now when I think I can't or shouldn't exercise anymore. My logical brain says "yes, you must workout to keep your level of daily life as it is" and my pain sesors say "are you bleeping crazy? this hurts!!"

I've been doing careful workouts with Pilates for several weeks. I keep my range of movement small, and am careful to protect my neck (prior surgeries/fusion/nerve damage). I don't hurt during the workout other than the typcial "feel the burn" in my abdomen or behind. However, in the hours that follow a workout, I'm so sore. I can deal with the sleeplessness issue from exercising too late in the even ing, but the post workout pain is pretty fierce--and not in my "feel the burn" areas. Everything seems to ache--joints and muscles. Tonight my arms and neck are spasming, with my left bicep is being the badboy tonight. Tomorrow I will be stiff as a... hmm... block of ice...

I worry that if I quit trying to build my muscles back up, I'm going to be in worse pain from my joints moving all over creation, and my muscles will be less able to help my wimpy veins and arteries do their job at keeping me conscious while standing...and I have to admit, I do feel much stronger since sticking with my workout routine for a few weeks now. I've not been able to stick with the toning routine for more than a week--except at physical therapy, and that was just upper body only. The routine I do now is for "pain free posture" hah.

I've tried soaking in the tub, and also did get that roll on rub that was suggested to me in a prior post. The rub works great on a localized area... but at this point, the pain is my whole arm, my neck, my low back...

Anyway, I know that keeping as fit as I can is so important to me being able to continue working and finishing my Ph.D. I'm wondering if any of you have any other ideas, tips, tricks to sticking with your routine, and coping with and/or eliminating post exercise pain.

Thanks for reading all my late night rambly bits. Nina

[taylortotmom]

Here is my motto to life right now: Don't let what you can't do interfere with what you can do. I feel your pain (sometimes, literally). I know whatever I can say you have heard before but here it goes. Walking is the best and easiest way to get back in the swing of exercising. It is low impact and can be adjusted to your abilities day to day. There is no cost related and can be done anywhere. I have found that walking as often as possible (and sometimes it is NOT possible) can help my overall endurance. I tried pilates until my cardio told me to stop. (Long story). When I was in graduate school myself, walking was also therapeutic. (However, physically I was at my worst during this time as far as gross motor skills go). It is hard to stick with something that is painful so I'm not sure what would really help you the most. Maybe there are some nontraditional ways of working your muscles that are not so strenuous until you build up some endurance. No pain no gain is not necessarily true. I'm not sure what has been vetoed for you but bike riding, skating, or even dancing can break up the routine. Of course, you may not be able to do anything like that based on your history. I'm sorry I'm not more help- I can make you a good deal on some pilates equipment though!

Carmen

[ariella]

hi Nina

Agree with Carmen about the walking. It's the only form of exercise that doesn't send me into bed. I don't have your EDS issues, so I don't know if it would be beneficial to you, but I do have pain which is probably muscular in origin, it feels like someone poured lead under my skin. Heavy and painful. I make a point of taking 3 short walks a day, and it seems to be helping overall. I also make a point of walking outside, as opposed to being in the house on a treadmill. Far more distraction outside, which helps for the pain as well as for keeping me otherwise cheerful. Do you have an air-conditioned mall close by?

I haven't been posting much the last few weeks, but have been checking in to read when I can. It seems you have been going through a more intense time than usual pain-wise?

Wishing you some relief

Ariella

[steph37822]

oops

[MightyMouse]

First, let me share what exercise I've been up to:

I walk outside when it's cool enough

I ride my recumbent bike in my supercooled basement

I do pilates floorwork only--nothing beyond being seated on the floor of my basement.

I do a prescribed physical therapy routine with therabands (big rubber bands)

I do pilates on the performer (a machine that has a flat platform on rollers which ride on a metal carriage)-the performer is only about 2 inches off the floor, and all the exercises I do are either seated on the platform, or laying down.

When we can, we have a tandem bicycle, which I LOVE.

Pain Meds:

I mentally struggle with the stigma of living on a constant dose of oxycontin. I also have norflex and flexeril at my disposal, but the problem is that it gives me a terrible drug hangover, so the day after, I'm a zombie. The biofreeze is great...I guess I'll try using more of it and using it beforehand.

I'm also calling my pain management doctor today to set up an appointment, right after finishing this post. I'm all out of ambien and I'm hoping perhaps he will prescribe that so I can sleep through the pain and heal up for the next day.

EDS Issues:

I seem to keep partially dislocating my left shoulder--it doesn't come all the way out, but it's in a position right now that restricts my range of motion. Teri is a former horse trainer and is quite good at popping things back into place, but was sleeping when I realized my shoulder was out. Last time this happened, the joint popped back in on it's own a few days after, making a loud snap, and then my arm felt fine. I think that there must be a nerve that's unhappy with the current state of the joint, and that's setting off the bicep spasms in that arm. I've also been very careful with my neck, sometimes even working out with one of my assorted hard braces on to keep the motion limited, and to avoid hurting myself.

Steph, sorry to scare you with my spine issues. My spine has always been hypermobile. As a child I could turn my upper body almost completely backward, while leaving my hips and legs facing foward. Gross, huh? My knees are also very loose. Sounds like we have similar issues, but with different joints as our primary problems.

I have osteopenia, which is early osteoporosis, so I need to do strength training to keep my bones from losing more calcium. My docs have told me running and aerobics are out of the question. Also, I don't like swimming that much. I have a fear and respect for water--I didn't learn to swim until I was 13 and it wasn't an easy process. It's my least favorite exercise, so I know I wouldn't stick with it at all. I just like to dip in the water and get out, or float on a raft.

Thanks for supporting me through this process of coping and pushing on. I'm signing off now to call my doctor. Nina

[MightyMouse]

I see my pain management saint at 9:15 on Monday. nina

[steph37822]

oops

[Guest Julia59]

Nina,

What type of exercises to you do to strengthen your abdomin muscles?

I'm concerned of straining my neck. Just getting myself up from a laying down position is difficult because I can feel all the shifting. cracking, and movement of the unstable area's.

The abdomin muscles are very important muscles to strengthen for the spine instability issues.

The worst of my joint instability issues are upper back, shoulders, and neck. Dr. Heffez said there was some slipping at the cervical/cranial junction on extention of my neck----meaning instability------ .

I am so out of shape since this last set back with my POTS. I should have tried harder to keep in shape. I don't sit around on my can as I keep pretty mobile around the house---taking breaks in between. Fatigue is so intense lately----but honestly, I think lack of exercise plays a partial role in the fatigue, so I need to get moving.

I don't know what to do because I have those heart spells when I get my heart rate up. This monitor will help figure things out, and hopefully give me more confidence in exercising. I used to exercise all the time---I really miss it.

I was back to walking after my surgery, but then the heart spells heppened. It seems to have something to do with gravity---i'm guessing.

I did try the stationary bike, and I don't seem to get the irregular heart beats on that. I imagine because i'm pumping the blood back up. With walking, my blood just pools over time and there isn't enough for my heart to pump----another guess.

The AB-LOUNGER is something I want to try, and also the pilates. What type of pilates do you do so you don't strain your neck/shoulder area? I'm getting some ankle weights, and some two pound arm weights tonight. The ankle weights help strengthen my legs faster on floor exercises. I can not wear them standing----it makes the gravity feel worse.

Maybe you can try ankle weights on the floor exercises. I really want to strengthen the abdomin muscles. I'm long waisted----and I want those long muscles back in shape. I have the jiggly/wigglies.............

I really want to ab-lounger machine. It seems like something we could all tolerate, as this is done on an AB-LOUNGER----laying down. I think it would lesson the impact on the joints.

As far as the pain goes---i've just resigned myself to it because I can't tolerate the pain meds (I wish I could), my quality of life would be better. Tylenol and ice for me---------

I think massage would help you a great deal---it always helps me with my pain. I'm lucky, my hubby will massage my back for me when I need it.

Uggg----i'm babbling away----aren't I--------?

I hope you are able to control your pain better.

Julie :0)

[Jersey Girl]

Good Topic! I also have found it difficult to balance what types of exercise I might attempt in a day or week. I agree that the walking seem to cause me the least distress if it is not too hot, lately not so. I envy anyone who might be able to mall walk because I am still subject to overstimulation in the stores and find my tolerance to be about 10 minutes before I need to use the john urgently. I have started some easy water aerobics in a class and not only is it fun (which I have found is in short supply with this illness) but it is somewhat stabilizing for the time I am doing it and shortly thereafter. But it is important to remember not to throw out the baby with the bath water because I have to do some kind of exercise as well to keep all those veins doing their job. This past Monday I just had an injection of cortisone in my left shoulder as I have been experiencing pain and discomfort in my neck, shoulder and along the upper spine too. I was diagnosed with shoulder impingement and cervical sprain and sent for more physical therapy. I don't know if you remember but I had right shoulder surgery to relieve calcific tendonitis and frozen shoulder this past February. After 5 months of therapy on the right shoulder I am almost use it normally, but more importaantly, the constant pain has really subsided. I was told from X-ray that the calcifications in my left shoulder were "fluffy" and considered a normal finding, but the muscle spasms and pain with using my rotator cuff are not normal. I am hoping the PT will help as much with the left as it did with the right. They use electric stimulaltion and ultrasound on those spasmed muscles besides the exercise program and manipulaltion. I hope you get some relief soon and can find exercise that doesn't aggravate your symptoms. Martha

[Laura]

Hey Nina! I can completely feel for you! I don't have much to add except to tell you what I was told.... do your exercises at a level that you consider to be "fairly light" and don't push beyond that for the first six to eight weeks. You generally won't feel improvement during the first 6-8 wks, but after that if you feel things at the "fairly light" level are getting easier, you can start to increase your intensity gradually. It's very important to try to continue with the exercises, the trick is to vary your time and intensity according to how you are feeling. If you are feeling extra tired or sore, do less and easier for a while till things get back on track.

Anyway, it all sounds good.....but doesn't seem to do much for me! Hopefully the pain guy will give you some good advice and ideas to help things get easier for you. Don't give up! You are doing amazing just getting all of those activities in! And thank goodness for Terri! Laura

[MightyMouse]

My abdominal exercises do not involve lifting the head at all. With pilates, you basically squeeze the ab muscles and try to imprint the spine on to the floor. If you watched me, you'd think I wasn't doing anything. Also, I have ab exercises I do while seated on my therapy ball, which were prescribed by my PT. On the ball, I sit tall and move the ball slightly backward, tightening my belly. It's actually pretty challenging.

Thanks so much for all the suggestions. I'm planning on sticking with this for the long haul. I lost so much when I was out of work for 2001-2002, and then again in the past year before I got the series of kenalog injections in my discs. I'm determined, if anything.

Last night was really rough though--my left arm and neck were spasming until about 4am, when at last, I fell asleep. I even managed to get to school today. Exhausted, but I was there, with my paper in hand.

I think what I need at home are some cheerleaders to yell "go Nina, you can do it" when I feel like crud but otherwise am safe to workout.

Nina

[calypso]

Nina,

In the July issue of Natural Health magazine, there was an article about "weekend warriors" and how to prevent soreness. Not that you are a weekend warrior, but it had some useful info for preventing soreness. Problem is, I loaned the magazine to my mother-in-law. Maybe there's a Web site; otherwise, stop into Walgreens and see if you can just look at it. It gave a couple of herbs to take following workouts to prevent soreness. It also suggested using arnica oil topically to reduce pain and inflammation, and I use this on my massage therapy clients with great success.

Biofreeze is OK, too, as is Prossage, which gives a warmer feeling than the Biofreeze but has a similar effect.

Don't worry about the Oxy stigma. I have clients who take four a day and are out there driving around. They seem fine. Your body adjusts to it if you truly need it. That's what it is there for. I am not a drug advocate, but you have to live your life in some degree of comfort.

Hang in there and do anything you can to keep exercising moderately.

Amy

[Sunfish]

nina-

lots of thoughts/wisdom has already been offered up (not to mention i'm a bit behind on the uptake), but while i can't relate to all of the specific pain issues with exercise, i can totally relate to the balancing act of trying to keep pushing when your body says no...and not always knowing where that fine line is. as an former fairly hardcore sports gal, it's still so hard for me to shift out of the no pain no gain mentality.

but...mostly i just wanted to wish you well for your appointment tomorrow. it sounds like your doc is a good one so i hope it goes extra super well!

julie -

when i started pilates some after my neck surgery, i adapted everything so as to not put any strain on my neck...it sounds like nina may be one step ahead with a program that doesn't need adapting, but essentially i just kept my head/neck down whenever one would "normally" lift it up...and i still definitely got benefits!

melissa

[MightyMouse]

Thanks everyone

I'm thinking that I might ask about changing my meds a bit--I did pretty well on neurontin in the past, but when my neck fully healed, I stopped taking it. I was relatively inactive then, though, so I'm wondering if that might help me not feel so beaten up the next day. And despite my mental issues with taking major pain killers, I think my body has adjusted to 10mg of oxycontin and requires a different dose...or a vacation from it...in order to get relief.

Yes, my pilates dvd's tell you how to adapt if you've had neck injury. So, I keep my head level with the rest of my body.

I'm starting to see progress. I was able to right my recumbent tonight for 20 minutes--and I'll cheer for myself about that, as I was able to be up to resistance level two instead of level one. Yesterday and the day before, I had lay low, as I was having terrible muscle cramping and pain, along with bone pain, and my left shoulder is still slipping in and out of joint.

I still think it would be great to have some highly motivating group of personal trainers cheer me on, starting from getting out of bed in the morning

Nina

[Sunfish]

i forgot to mention it before, but i'm TOTALLY with you on the personal motivation team idea...and as an added bonus perhaps they could do a bit of cleaning between cheers???

[Guest Julia59]

Nina,

Can I ask where you got the pilates information, as I want desperately to build some strength. My joints are becoming more and more unstable.

I'm still getting little heart flutters when I do any physical activity that gets my heart pumping----but it may also be gas. Needless to say I have a little anxiety about that. Anything standing up seems to cause that---as floor exercises or the bike I seem to do OK. I couldn't bear to watch my husband do another thing around the house so I help out the last few days---the best I could. Well I ran the vaccuum----and I didn't do well at all, and I felt light headed and heart fluttery.

I'm just so darn weak and fatigued lately--I don't want to go to that place I was in 2000----so i'm fighting with all my physical/mental powers I have to stay centered throughout this potshole i'm in. I'm going to see the nurse practioner at Dr. Grubb's office Wednesday to see if they can put me on something for my jitters. I have been awful jittery since the minor procedure to implant this loop recorder. In reality, I stared to go into the potshole before the procedure.

When Dr. Grubb came into the cath. lab to implant the device, he asked me how I was feeling. I told him I was wiped out. I thought he would feel sorry for me and say---"OK we won't put the loop recorder in today". Well not so fast-----he's also the ANS specialist we all know, and he knew I would be OK for a "minor" procedure---------------- . My problem was that I already had the potsy jitters-----and after the procedure---they just got worse.

I'm figuring the pilates will be a good place to start a more regular routine and force my body to toughen up a bit.-------------------

Julie :0)

[steph37822]

oops

[MightyMouse]

Clutzy McClutz here. Last night I badly injured my foot, so the recumbent bike is out for a few days until it heals. I dropped a large steel oven grate on the top of my foot, and the corner of the grate landed on the two long bones that go to the middle toe, and the next to last one. Owie zowie... I slept with an ice pack.

Doctor's visits today: there were two. My morning stop before school was for pain management. I've been bumped up to 20 mg from 10 of oxy. Evening appointment was with my local EP cardio--some of you may recall that after my last syncope episode, my neuro threatened to take away my driving license if I didn't go to see the cardio. EP says I'm fine to drive, but wants me to cut out my bp meds in July and August because he'd rather have my bp a bit higher and no syncope than my bp lower and many syncope episodes. For now, I will be dropping the cozaar out altogether until the temperature drops into the 70's again.

I am luck to have gotten the Pilates machine--for free. A member of the NDRF forum was going to throw it away, but offered it to anyone who would pay to have it shipped. I paid abou 100$ in shipping (that thing is HEAVY!), but that's still way cheaper than buying one outright.

The link Steph gave you has all the info about the DVD's I'm using. Nina

[Sunfish]

glad your appointments seemed to go pretty well today nina, but sorry to hear about your foot. ouch!! hope it's feeling better super soon....

and i agree with the doc (for what that's worth...er, nothing? )...a bit higher BP sounds a lot better to me than fainting/syncope...

hope the med switches go well,

:-)melissa