Building strength back

[Michele]

My levels of Creatine Kinase are low. Google searches show his as a trait of alcoholism (doesn't describe me) or rheumatoid arthritis.

Does physical therapy and building muscle mass back raise Creatine Kinase levels? Or does one have to be consistently well enough to just seriously lift weights?

Is the level low from the disease process or the result of having no physcial activity during flares?

If only moving a mouse and typing would build muscle!!!

Michele

[Maz]

[user=50]Michele[/user] wrote:

My levels of Creatine Kinase are low. Google searches show his as a trait of alcoholism (doesn't describe me) or rheumatoid arthritis.

Does physical therapy and building muscle mass back raise Creatine Kinase levels? Or does one have to be consistently well enough to just seriously lift weights?

Is the level low from the disease process or the result of having no physcial activity during flares?

If only moving a mouse and typing would build muscle!!!

Michele

Hi Michele,

According to this wiki article, a lowered creatine kinase can also be an indication of rheumatoid arthritis, so I promise we won't suspect you of alcoholism just yet!  :roll-laugh: 

http://en.wikipedia.org/wiki/Creatine_kinase

What do they say about this on the MP site? Do they think it's part and parcel of the immunopatholgy of Th1 disease or could it be something else, like a side-effect of benicar? If it's something new that's just suddenly cropped up, it may synchronously tie in with anything new introduced, but then maybe a question of deciding if it's a side-effect or just a part of the immunopathology…maybe a herx-related thing?

Peace, Maz

[Michele]

Hi Maz,

I do have a “-holic” problem, but it's dark chocoholic!” :roll-laugh:

MP doesn't promote PT or worry about losing strength. They just say when you get better you'll do more and it will improve. But, I don't want to just turn into mush if I can and feel well enough to be doing something about it. I know you've had success with PT, did you notice anything with the Creatine Kinase levels changing? Or are we just destined to not build back strength?

Well, my evening walk is going to get washed out…it's thundering!!! I really will miss my walk, but I love gentle spring showers and storms! 😀

Michele

[Maz]

[user=50]Michele[/user] wrote:

I know you've had success with PT, did you notice anything with the Creatine Kinase levels changing? Or are we just destined to not build back strength?

Hi Michele,

I get really thorough bloodwork done every two months and my creatine kinase hasn't moved outside normal range…though everything fluctuates to some degree, I've noticed.

PT was great for me and necessary to rebuild lost muscle and just to get me moving again….bearing in mind, last year both my shoulders were completely frozen and my hands like claws, so I don't think I would have managed to get out of that fix without some help. :crying:  They unfroze my shoulders with the help of ultrasound and showed me lightweight upper body exercises to increase range of motion and to start rebuilding strength. It was horribly painful, but it worked. The more recent PT (just graduated after 20 sessions), was to work on my lower body…knees and ankles. I lost so much thigh muscle mass and tendon strength that my knees were swiveling in their sockets. So rebuilding all that has been invaluable and stopped the swiveling in its tracks. The PT said my left knee improved by 70% and my right by 50% by the time I'd finished therapy last week, so it's been a great help and I now just have to keep the momentum going on my own at the gym. I still have swelling in both my knees and ankle tendons, but the PT is convinced I'll continue with this improvement trend as long as I make sure to keep it up.

So, yup…sure do place a lot of value in PT, as well as in the emotional angle of just getting moving again and feeling a little more productive. Whatever we don't use for long periods, we lose…but it's important to have professional guidance when one begins to reuse the joints, just to make sure we don't overdo it and hurt joints further.

I'd say if one feels ready to get moving again, even in small amounts and short periods of time, then it's important to use that window of opportunity, as you're doing with your walking…really for a lot of reasons:  improving strength, ROM (range of motion), to get lymph moving, to help digestive system to get moving, to help detox, etc. Like the MP says, Dr Brown also said in the Road Back that muscle and tendon strength would return as we improved and naturally started moving about more, but it also helps to speed things up and just to mentally know we're doing something to help things along. There were actually things I was afraid to attempt that the PT encouraged me to do and showed me how to do safely…this was important because I think my fear may have stopped me doing some things altogether.

And, anyway….after a good exericse session….you don't feel so bad having a little piece of chocolate every now and again as a reward!! :roll-laugh: 

Peace, Maz

[DianeM]

Hi Maz,

I?ve read the board for a while now, though haven?t posted, but was hoping you could tell me a little more about the PT and maybe some of the exercises you did? It sounds quite similar to what I?m going through but I just don?t seem to be making progress. 

I?m 29 and have had scleroderma for six years but it wasn?t until just over two years ago, when my CK levels shot up, that my strength and range of motion really deteriorated. 

I started immunoglobulin infusions in September 2006 and Minocin (I?ve only been able to get the Acnamino brand) in August 2007. Though very surprised, my doctor said I could stop the infusions last October because my CK levels were back within normal range again. But my strength and ROM haven?t really improved.  

I can only lift my arms a couple of inches, my hands won?t even reach my ears, and I?m wondering if this is what you meant when you said your shoulders were completely frozen. My hands are also like claws and I had lost so much thigh muscle before the infusions that even lifting my foot into my shoe was difficult. My legs have probably improved the most, though I still can?t lift them more than maybe a couple of inches. 

I desperately want to do physical therapy to improve and be able to do more for myself but as I said, I?m not getting very far. I?ve asked the hospital repeatedly for physio but all I get are exercises to do at home. Many of these I can't do because I just can?t get into the position but I feel this is not nearly enough anyway. The only other real exercise I manage is hydro once a week.

Ideally, I?d need to do the exercises sitting down because as soon as I stand up my heart rate increases to the point where I?ll faint if I?m on my feet for even five or ten minutes. 

On the positive side, I do think the Minocin is helping. The terrible itch I had before I started 200mg a day has more or less gone and only returns in very warm weather. My skin has also softened a little on most parts of my body. 

Thanks for any help/suggestions.

Diane

[Maz]

[user=426]DianeM[/user] wrote:

I?ve read the board for a while now, though haven?t posted, but was hoping you could tell me a little more about the PT and maybe some of the exercises you did?

 

Hi Diane,

Yes, according to the Wiki article, a raised CK or CPK is related to muscle wasting and a number of other conditions. Even cholesterol lowering statins can cause an elevated CPK, which is one of the nasty side-effects, causing severe muscle pain. Michele's level was actually lowered, so this is likely more a sign or bloodmarker of RA, if what the article is saying is correct.

I used to live in the UK and actually worked on the clerical admin side in a Social Services Occupational Therapy office in Nottingham one summer when I was at poly. OT is a bit different from PT over here, where a hospital OT, for instance, would be more likely to help a scleroderma patient with exercises, rather than just providing OT equipment and techniques for getting in and out of baths, etc, as they do in the UK. It was a long time ago (early 1980s!), though, so things may have changed since then. Anyway, I'm sorry you haven't been able to get much joy from the NHS PT services. Here, PT is run out of private businesses and you choose where you want to go and your insurance covers so many sessions. In my small town, we have five PT places from which to choose and I get 30 sessions a year on insurance. Quite different from the UK, I'm sure. 

All this aside, the PT sessions I've been having are really to show me how to exercise at home. Although the sessions were 2 hours in length, half an hour of that was doing the ultrasounds on my joints…5 mins or so per joint. Then, I'd do 15 mins on the exercise bike, 10 mins on the leg press and 20 mins on the tredmill independently. So, the remainder of my session was doing gentle table exercises, steps with light hand weights and ankle weights…that type of thing.

In your case, as you can't stand for too long, you'd be better off doing gentle table exercises…which you could do lying down on your bed or sitting in a chair.

For my frozen shoulders, I did cane exercises. So, if you have a long stick…maybe even a long brollie, just lie flat and hold the cane by its ends and raise it as far as you can comfortably go…hold for 10 secs and then repeat 10 times.

Again with the cane lying down, hold both ends, but this time, with one hand on the end, gently push the cane off to the side so that your opposite arm is stretched parallel to the ground, like you are doing a snow angel – repeat both sides 10 times.

Then, with your cane lying down, again, hold it at both ends with elbows bent and raise it over your head as far as you can comfortably go. 

It's best not to strain yourself, just to stretch and hold. Each time you do these, you should find it gets easier and your ROM will increase over time.

If you can manage to stand for a couple mins, hold on to the edge of a chair or table and, slightly bent at the waist, make a stirring motion with each arm, as if you're stirring a big cauldron. Do this in both directions 20 times, as far as your shoulder will allow you to stir outwards. The other motion to try, in the same body position, bent forward, it to swing your arm back to front 20 times and then 20 times sideways across your body.  

These were the arm exercises I started with last year…then I moved on to light arm weights later when the pain was less. If you want me to describe these, just post again when you're ready. 😉

For my hands, when they were locked into claws, I had paraffin bath treatments, which you could probably do yourself or at a beauty salon or spa, if you can manage to get out. These were unbelievably soothing and really helped to loosen up my hands. The hand therapist also gave me theraputty, with some exercises drawn on a sheet, which are a bit harder to explain…but basically, you just squish the putty as if squishing mud through your hands. Then, again, with each individual finger, squishing the putty to touch the thumb with each finger.

For wrists….I used very light hand weights (2lbs) or even a small water bottle, if you can clasp it okay…then, just resting arms on an armrest, just raise the weight up and down at the wrist 20 times. Then, in same starting position, rotate the wrist, front to back 20 times.

All these exercises can be painful, simple as they are, so it's best not to push yourself and just to do what you can manage, gently stretching, rather than pushing or jerking. These are also just the beginner exercises I was given for my upper body and I was told to do them at least 2 times, but optimally 3 times a day. I later graduated from the cane to therabands, which I bought from Walmart…they are just the stretchy pilates bands you can buy in different strengths.

If you'd also like some recumbant leg exercises to do, I'd be happy to share these with you, too…just pop me a post in reply.

Hope the above may be of use to you!

Peace, Maz

 

[Parisa]

I'm glad your CK levels are down.  Was there no way to continue the IVIG until you also got the strength back?  Could you ask them to put you back on until you got more strength?  Sometimes labs don't tell the whole story.

[Michele]

Diane,

May I include some of the OT and PT I had in a couple sessions? Basically just firing the muscles is what you want to start with. Just by tensing and un-tensing them. You can do this in any position that's comfortable and isolate your forearm, upper arm, glutes, and upper leg quadrants.

OT/HANDS:
Hands have many fine muscles in them and do get sore quickly! Go slowly, and do a few to build on it. I broke my hand a couple years ago, and really learned that overdoing therapy can make things more painful. I regained full use of my broken hand with an original dx that said I could lose up to 50 %. Here is where I started after getting out of the cast.

#1a: Put some dried beans (about 3 cups) in a baggie and wiggle your hand around in the beans. Grab and drop hand fulls of beans. “Play” with the beans.

#1: Open and close your hands gently. Move them as far as you can. Just stretch and fire the muscles. Start with few (3-5) repetitions and build up. (10-12) If you tire slightly rest so you don't overdo. Then come back to it later.

#2: Bend the tips of fingers towards your palm touching where your fingers attach to your palm. Go as far as you can. Extend fingers and repeat. Again, less is more at first! This targets bending the joint closest to your finger nails.

#3: Bend the fingers toward palm as far as you can focusing on bending at the second joints from the tinger tip. Extend open and repeat.

#4: Bend the fingers toward palm using the “punching knuckles” Extend open and repeat.

#5: Open hand as wide as possible and touch the tip of your thumb to the little finger, re-open as wide as possible and touch the ring finger, then proceed to continue down the row to touch individually the tip of each finger. Do this as many times that is comfortable. Do each hand.

Overdoing will cause the hand muscles to burn, so again START with small number of reps and build up. Once your muscles strengthen, it is then good to attempt moving the finger(s) a little further than they may “want” to go. Again, “a little further.”

Since my hand was in a cast for so long, I didn't move up to rubber bands or putty for a while. I did the above, first. The first time I could touch my finger tip to my palm was such a day of celebration! I regained full range of motion in the hand, though two fingers are not quite aligned correctly, they function fully.

Parafin baths are nice. I also liked cloth rice bags heated in the microwave for moist heat. It burns if over cooked. My bag took 2 min. in the microwave and came from the OT. This feels good on any stiff joint. It is nicer than electric heating pads IMO, but doesn't stay hot as long.

PT:

#1: Lying flat on your back, pillow supporting your head, draw one leg up to gently bend one knee and place foot flat. With the other leg extended, just fire the muscle in your upper part of your leg and relax it. Repeat until you feel slightly uncomfortable. Keep track of your repetitions and gradually build up over time. Switch leg positions and repeat.

#2: Lying flat on your back, pillow supporting head, draw one leg up to gently bend one knee and place foot flat. (Same start position as above) Drag the heel of the extended leg to match the already bent knee and then re-extend straight. Repeat. Start with few reps (3-5) and build up. Switch legs.

#3: Lying flat on your back with both legs extended. Place a soft soccer ball or roll up a towel to create about an 8″ firm roll UNDER your knee to support your knee. Lift your foot up to extend leg straight using the leg that is being supported under the knee. Then place heel back down. Repeat. Do each leg.

#4. Lying flat on your back, draw the alphabet or numbers with your toes to stretch your ankles. OR, sit with legs suspended over the side of the bed and draw the alphabet and numbers.

#5. Lying flat on your back with one leg bent and foot flat. Lift the other extended leg while firing your abdominal muscle. Lift foot about 6 inches off the bed and hold there for as long as you can. Switch legs. Repeat. Hold as long as you can without holding your breath and target about a total of 15 seconds for a longer term goal. (This doesn't work in my bed because it's too soft. I use a floor mat.)

Maz's shoulder excercizes fit your needs better. But if anyone else is interested:

#1 Stand next to a wall with your shoulder close to the wall. Rest your hand on the wall next to your shouder and using the wall as support, slide your hand up to full extension and then back down.

I would be interested in hearing other people's PT exercizes.

Mostly, my PT / OT was to train me in the motions and the rest is daily “homework.”

In prior years when I regained the full use of my hand and in another instance recovered from a broken transprocessor in my back, OT and PT was a God-send. I'm starting to add back in those exercizes for my back. And I think I'll get back to PT and see what other things I can do to add some variety to these moves.

Glad you posted Diane!

Michele

[DianeM]

Maz and Michele, thank you *very* much for posting all those exercises. 

Maz, sounds like the OT/PT difference is still the same. My OT gives me aids but doesn?t do any exercises with me, only the PT does that.

I?ve read through the exercises and tried a couple so far. The first two shoulder exercises you described, Maz are fairly similar to what I do, but yours are much better. I can feel the stretch when I use the cane and can even feel my stomach muscles working. And it?s the same when I try the ?cauldron stirring? and arm swinging.

Michele, it looks like there are a lot I?ll be able to manage from the ones you listed, especially for the hands. I'm going to see how I get on with the leg ones tomorrow. And the bag of beans sounds like a great idea. I?m going to re-read them all again and try a few new ones each day. I?m very lucky in that I rarely have any pain no matter what I do but I?ll definitely take it easy when I try these out. 

If you don't mind, Maz, and when you have some time, could you post some recumbent leg exercises if they?re different from Michele?s?

Parisa, I?m not sure if having more IVIG would help. From the way the doctors described it, the damage had already been done and only PT would help. My CK was close to 900 when I started and my target was 200. I had dropped and stayed below 200 for about 7 months when they stopped the treatment and when last checked it was 54. I?m not sure if they had to stop it in case it then went too low.

Thanks very much again for all the replies and taking the time to write out all the exercises. I really appreciate it 😀 Hope you're feeling well just now and having a good weekend.

Diane

[Parisa]

Diane,

I don't know whether more IVIG would help or not, but I do know that the dermatomyositis patients who use it specifically for muscle weakness do not stop just because their CK numbers come down.  If they have success with it, they don't mess with it and continue (if they have good doctors/good insurance).  After a while,  some wean slowly, doing a little less each time or spacing out the treatments, to make sure the weakness doesn't come back. 

[DianeM]

Thanks, Parisa.

I have to admit I was really surprised when my doctor said I could stop. When I first began the IVIGs I was told about people who had been receiving the treatment for years, even 20 years in one case.

They did start to wean me off it, though. At first I was going in every 3 weeks and by the time I stopped it was up to about 10 weeks.

Diane

[casey]

Hi all,

This maybe has similarities to Micheles post.

My son 13 with lupus, has always had normal range creatinine. Not creatinine kinase but blood creatinine levels. After being on biaxin for 5 months and doxy every other day, his creatinine went 9 points below the normal range and is sitting there. His ANA and dsDNA went negative at this time too. His liver tests also are always below normal as well. 

Does anyone know anything about creatinine? I know it is for kidney function but i always believed high creatinine is the concern. Most research says that. I asked a nurse at the hospital yesterday and she told me low creatinine was just as bad as high creatinine. the kidneys are overworking. I called a friend who works in a kidney specialists office and she said they mostly worry when creatinine goes high but i just dont trust any prof opinion in all of this as we all seem to be so much on our own.

Any input here appreciated.

Casey

[Maz]

[user=426]DianeM[/user] wrote:

If you don't mind, Maz, and when you have some time, could you post some recumbent leg exercises if they?re different from Michele?s?

 

Hi Diane,

Nearly missed this! 😉

All the exercises that Michele kindly added are pretty similar to the ones I started out with, as well. “Recumbant” literally means, “laid back” or “in a resting position,” so these should serve you really well for now until you're able to stand for longer. So important to keep the lymph and circulation moving and should be easy to do when just lying on the sofa watching telly or in bed. I do mine when I'm watching my favorite shows, so it makes the drudgery of it seem much less.

The only other additional leg exercises to the great ones Michele shared that come to mind are:

To sit or lie flat and just tense the thigh muscles, pressing the knees into the bed (100 count if you can do it, once or twice a day) and holding the muscle tight for a few seconds. PT said that when we don't use our legs for a while and the muscles atrophy, the knee cap can become misaligned. This exercise was one of the first I was shown to help tighten all the muscles in the thigh where they connect around the knee cap and ensure the kneecap was properly in position before moving on to standing leg exercises. 

Another thing you can try is to lie flat on your bed, tossing pillow to one side, with your bum as close to the head board as you get it. Then, with a small hand towel under your feet, just “wash the wall” with your feet in up and down motions, bending at the knees and then stretching back upwards for 100 count, if you can manage it…if you can't, then just do sets of 5 or 10 until you get tired, with breaks between the sets. You can also do this lying on the ground on an exercise mat, if you can get down and up from the floor, that is. 😉 I had to do these on a table as my headboard was too high! I also can't get up from the floor with my knees just yet.

When you're a little stronger and have graduated from recumbant exercises, then maybe you'll be ready to try some standing leg exercises. These are just ones where you hold onto a chair for support and lift each leg sideways, one at a time. You could start with doing a minute on each side and build up to 4 or 5 minutes before adding some light ankle weights. The other one is to stand sideways to a chair and holding on with one hand, just march in place…again starting slow and building up as your strength allows and later adding light ankle weights. Once you've graduated from these, you can move on to steps…if you'd like these at some point, I'd also be happy to share these.

All the best with your home PT regimen, Diane!  I really admire that you're going all out to do these and keep them up. You're a dudette!  :dude: 

Peace, Maz

 

 

[DianeM]

Thank you very much again, Maz and Michele.

Diane

[Author]

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