Rhabdomyolsis - Damage Repair Following Trauma ?

[Speedo1968]

This posting is to ask for any advice as to repairing severe muscle damage caused by Rhabdomyolsis.

Please note I am fortunate in that I do not suffer from diabetes.

I have had multiple TIA's and strokes since 2012.

Have worked in hot countries much of my life and am used to drinking water to compensate fluid loss.

I walked ( at the speed of my feet ) daily into town and back between 6km ( minimum ) and 12km daily for 5 years.

I am male aged 70 slim build.

 

My situation - went to bathroom, stroke, unable to get off toilet by standing so had to fall off seat,

became unconscious for unknown period of time, came to unable to move any part of body except fingers,

doors ( except bathroom ) closed, windows closed, day temps inside house 36 - 38C , 

found 48 hours later taken to local ICU then a few days later to a KK hospital ICU.   Total 2 weeks in ICU.

 

Massive muscle loss in legs, trauma to legs and feet, head, arms.   Edema legs, etc.

 

The following may be useful, they are levels relating to original hospital admission.

CPK levels 83,000

Creatinine levels over 10

BUN 94

PLT count 79

 

My situation now is that I am at home, in a wheelchair for at least 3 months ( to get muscle strength ),

started walking outside house with chair 2 weeks after leaving hospital and can walk a few steps unaided,

very controlled diet ( I have been vegetarian now vegan for 45 years ), exercising general body in house.

 

Can anyone help with ideas as to how to improve muscle strength and general improvement in body condition ?

Edited July 15, 2017 by Speedo1968
spelling and line adjustment

[perthperson]

I am very sorry to learn about your situation. 

 

I have no suggestions other than regular exercise under the guidance of a professional physiotherapist. 

 

You might also consider, if your kidney function has recovered(ask your doctor),  improving your protein intake with one of the commercially prepared meal supplements. 

Edited July 15, 2017 by perthperson
typo removed

[carlyai]

They have those elastic exercise bands. They come in different colours or some are harder to stretch than others. You can start on the light ones tied to your chair or your other arm or leg and get some strength training that way.
I know when I had a back op. and they damaged my nerves and my legs didn't work, I tied the straps around my ankles and worked like mad, up and down a million times a day (maybe an exaduration ).
They could help.

Sent from my SM-J700F using Tapatalk

[tonray]

There are likely 2 factors to consider here : 

 

1) muscle atrophy due to inactivity during recovery 

 

2) loss of muscle control due to stroke itself

 

I think a physiotherapist is key and also understanding whether it's just loss of strength permanent 

 

Do they know the underlying causes of the stroke? 

 

Having said all that, strengthening your upper body will assist in recovery and simple things like resistance bands can do that well. once your upper core is strong enough, you can use that strength to assist in becoming ambulatory and work your legs. 

 

Every day propel yourself with legs only in wheelchair, this will keep circulation going while building strength. 

Edited July 15, 2017 by tonray

[Sheryl]

Per his post, the muscle loss is due to rhabdomyolsis, presumably secondary to the prolonged immobolity after he lost consciousness  compounded by dehydration/heat stroke. So more than stroke involved here.

 

Presumably the acute phase is past, but you should still carefully adhere to follow up visits/lab test schedules.

 

There is no magic bullet for recovering from this. Good nutrition - including plenty of protein provided  your kidney function is now normal - stay well hydrated and regular exercises. Work with a physiotherpaist would be ideal but if not possible,  then try to at least have someone with you to help prevent falls. Walk several times a day, using a walker (get one if you don't have one) and try to gradually increase the distance. Once you are able to go short distances, a good trick is to have whomever is helping you walk alongside carrying a small plastic stool, when you get tired, sit on it and rest before continuing on -- this method enables you to walk further secure in the knowledge that you can rest before coming back, or mid way as needed.

 

As soon as you are able, forego the wheelchair in favor of walking with a walker as this gives more of a work out.

 

Practice arm lifts - both arms straight up and arms out with elbows bent then lifting. Once you are able to do this empty handed, try it holding small objects (can of food etc).

 

Don't push yourself to the point of pain or exhaustion. Slow and steady is the key, and multiple times a day.

 

Good luck

 

 

[dddave]

If the OP has not already done so, I suggest he or somebody who knows how, programs his phone for a "one touch" call to emergency services or a nearby friend should he fall or become incapacitated. A small, lightweight, old style phone that could be worn with a neck cord so always available when needed.

When a relative of mine was recovering from a stroke, I remember him being told to do leg lifts, one leg at a time while sitting in his chair, maybe once an hour, just a few at a time.

 

It's unfortunate that rehabilitation hospitals are a glaring omission in Thailand's medical infrastructure.

[Sheryl]

Good suggestions though I am not sure there is a servcie whereby you can call emergency aid in Thailand.  It is possible, however, to buy online  devices  that will ring elsewhere within a small radius and often far enough to reach say a neighbor next door, with buttons that can easily be worn.  Obviously have to have a neighbor willing, and need to keep the batteries charged. Lots of variations of this can be found on Amazon.com

 

Another good idea, and a lower tech on, is to arrange to have someone check on you once or twice a day at a specified time if they have not seen or heard from you before then. That person should ideally have a key to your place  and know to come in if they don't reach you, but lacking that could just be told to call police.

 

One exercsie I neglected to mention, for the arms, which can be done even in a wheelchair is a sort of modified push up against a wall. You position yourself directly in front of a wall or pillar, and lean foreward as far as you can placing your bent arms on it then gradually push yourself back with your arms, and repeat. (Make sure the brakes are on  if doing this fro ma wheelchair).

 

Also, you can practice leg lifts from the wheelchair as well as while lying down.

 

Patience and persistance are the key.

[perthperson]

6 minutes ago, dddave said:

It's unfortunate that rehabilitation hospitals are

Such hospitals are not easily accessed in the West and in some places can be cripplingly expensive unless the costs are covered by insurance.

[Speedo1968]

2 hours ago, dddave said:

If the OP has not already done so, I suggest he or somebody who knows how, programs his phone for a "one touch" call to emergency services or a nearby friend should he fall or become incapacitated. A small, lightweight, old style phone that could be worn with a neck cord so always available when needed.

When a relative of mine was recovering from a stroke, I remember him being told to do leg lifts, one leg at a time while sitting in his chair, maybe once an hour, just a few at a time.

 

It's unfortunate that rehabilitation hospitals are a glaring omission in Thailand's medical infrastructure.

Many thanks "dddave" for your suggestions and comments.

Unfortunately in this instance my phone was in the bedroom and I was in the bathroom.

You can dial 1669 for medical emergency which was done when I was found.

I will see if my phone can be set for one touch dialing.

 

Rehabilitation hospitals would be a no no for me even if they exist here in Thailand.

I was glad to be out of the ones I have just been in as now that I am in my own patch I can get on with self regulation, eat good food suited to my vegan diet, exercise when I am mentally ready, read a book to relax etc rather than a regimented regime.

I am fortunate that the house and very small compound that I live has gardens all around with plants and trees of all kinds, the views from my window are wonderful.    I can get out and about with my chair and exercise safely.

 

Thanks for the suggestions for exercises.   I use two lap laps tied together for leg upright pulls and for arm pulls.    I use some massage points to relieve tension etc.

I walk with my chair outside and have already got to 500 metres in the first week.     I also walk barefoot and unaided, except for the first few steps, on grass to help stimulate my legs and improve balance.    For the later it has worked fantastically.

 

[Speedo1968]

22 hours ago, perthperson said:

I am very sorry to learn about your situation. 

 

I have no suggestions other than regular exercise under the guidance of a professional physiotherapist. 

 

You might also consider, if your kidney function has recovered(ask your doctor),  improving your protein intake with one of the commercially prepared meal supplements. 

Many thanks 'perthperson' for your comments.

Unfortunately a physiotherapist is out of the question for numerous reasons.

I have guidance for exercises both in and out of my chair.

Last week I set a goal of walking for the first time and, with the aid of chair I am now up to 500 metres.   I walk barefoot on grass to stimulate feet and legs and to aid balance.

I have been a vegetarian then vegan since 1972.    My diet has been low fat, low sugar, low salt for many years which as you can appreciate is beneficial for day to day health and probably helps prevent diabetes etc.    Someone who is like minded prepares my meals including chlorophyll drinks ( using free wild plants ) and fruit / vegetable smoothies.   For some, supplements may be the way to go but for me I enjoy food.

[Speedo1968]

22 hours ago, carlyai said:

They have those elastic exercise bands. They come in different colours or some are harder to stretch than others. You can start on the light ones tied to your chair or your other arm or leg and get some strength training that way.
I know when I had a back op. and they damaged my nerves and my legs didn't work, I tied the straps around my ankles and worked like mad, up and down a million times a day (maybe an exaduration ).
They could help.

Sent from my SM-J700F using Tapatalk
 

Many thanks 'carlyai' for your suggestions.

Not sure what elastic exercise bands you mean.   At the moment I am using two lap laps tied together which I then loop around a foot, lay on the bed and try to pull my leg upright.    I use the same thing to to strengthen arm muscles.and help pull my back upright.

I found at the start that the most difficult thing was confidence in telling myself that 'I can stand' 'I can walk'.

[perthperson]

Just now, Speedo1968 said:

For some, supplements may be the way to go but for me I enjoy food.

I was not suggesting you change or alter the food you enjoy but a reputable supplement would help boost your protein intake (check this is OK with your doctor) .  The link will reveal what I am talking about. 

 

http://www.pharmacytimes.com/publications/issue/2015/january2015/medical-food-and-meal-replacement-nutritional-supplements?p=2

[Speedo1968]

20 hours ago, tonray said:

There are likely 2 factors to consider here : 

 

1) muscle atrophy due to inactivity during recovery 

 

2) loss of muscle control due to stroke itself

 

I think a physiotherapist is key and also understanding whether it's just loss of strength permanent 

 

Do they know the underlying causes of the stroke? 

 

Having said all that, strengthening your upper body will assist in recovery and simple things like resistance bands can do that well. once your upper core is strong enough, you can use that strength to assist in becoming ambulatory and work your legs. 

 

Every day propel yourself with legs only in wheelchair, this will keep circulation going while building strength. 

Many thanks 'tonray' for your comments.

Your right on both counts, the stroke came first setting off shaking feet and second falling and lying prone on the floor causing trauma. This lasted for 2 days under extreme conditions of temperature ( 36C or more ), dehydration, insufficient oxygen.   This lead to Rhabdomyolsis and consequently destruction of muscle.

 

For numerous reasons a physiotherapist is out of the question.

 

No specific reasons given as to cause of the stroke, it was not my first and I had previously had multiple TIA's since 2012.

The difference for me is that as I "listen to my body" I was able to recognize symptoms of an upcoming TIA , sometimes days in advance, sometimes hours.    With the strokes I have had there have been no warning signs.     I have had in my younger days two motor cycle accidents with cars pulling in front and me landing on the top of my head on the road, pushed over by an animal ( I worked in farming ) and surfing accident being slammed repeatedly into a sand bar.    Guess any of those could have been initial brain damage.   No genetic reasons that I know of.    

 

I agree 100% with your comments about upper body strength, a point often forgotten and not even mentioned by the specialists at the hospital.    I do suitable exercises every day for arms and back / spine and legs, the first two being in the beginning critical for later mobility.

 

Exercise - can't reach the floor from the wheelchair so unable to use it for strengthening legs - see next paragraph.

 

I set myself  goal last week to stand unsupported and try to walk outside with the aid of my chair.  I succeeded and have already got to 500 metres in the first week.     I also walk barefoot and unaided, except for the first few steps, on grass to help stimulate my legs and improve balance.    For the later it has worked fantastically.   If my legs don't feel they can make it I don't force them and any pain in the tendons running up the back of the leg from the knee I stop immediately.

[carlyai]

'Many thanks 'carlyai' for your suggestions.

Not sure what elastic exercise bands you mean.'

 

These thing in the photo. One other poster had their correct name I think, resistance bands. They come in a pack of different colours for different resistance.

But what you are doing with a lap lap sounds good. I started of with a rope.

I know how you feel about walking, it's terrifying when you can't make your legs work.

I just layed there in agony and worked and worked (mainly the right leg, as most nerve damage), and willed my toes or something to move, then after about 3 or 4 months I noticed a small flicker of my middle toe, then things seemed to come back fairly quickly after that.

 

 

 

Sent from my SM-J700F using Tapatalk

 

 

 

 

[tonray]

5 minutes ago, Speedo1968 said:

Many thanks 'tonray' for your comments.

Your right on both counts, the stroke came first setting off shaking feet and second falling and lying prone on the floor causing trauma. This lasted for 2 days under extreme conditions of temperature ( 36C or more ), dehydration, insufficient oxygen.   This lead to Rhabdomyolsis and consequently destruction of muscle.

 

For numerous reasons a physiotherapist is out of the question.

 

No specific reasons given as to cause of the stroke, it was not my first and I had previously had multiple TIA's since 2012.

The difference for me is that as I "listen to my body" I was able to recognize symptoms of an upcoming TIA , sometimes days in advance, sometimes hours.    With the strokes I have had there have been no warning signs.     I have had in my younger days two motor cycle accidents with cars pulling in front and me landing on the top of my head on the road, pushed over by an animal ( I worked in farming ) and surfing accident being slammed repeatedly into a sand bar.    Guess any of those could have been initial brain damage.   No genetic reasons that I know of.    

 

I agree 100% with your comments about upper body strength, a point often forgotten and not even mentioned by the specialists at the hospital.    I do suitable exercises every day for arms and back / spine and legs, the first two being in the beginning critical for later mobility.

 

Exercise - can't reach the floor from the wheelchair so unable to use it for strengthening legs - see next paragraph.

 

I set myself  goal last week to stand unsupported and try to walk outside with the aid of my chair.  I succeeded and have already got to 500 metres in the first week.     I also walk barefoot and unaided, except for the first few steps, on grass to help stimulate my legs and improve balance.    For the later it has worked fantastically.   If my legs don't feel they can make it I don't force them and any pain in the tendons running up the back of the leg from the knee I stop immediately.

Wheelchair heights are adjustable, I used to care for the elderly and if you have someone handy with a wrench you can adjust it so you can reach the floor which is far better long term.

[Sheryl]

500 meters is quite good. You're making progress!

[Speedo1968]

3 hours ago, carlyai said:

'Many thanks 'carlyai' for your suggestions.

Not sure what elastic exercise bands you mean.'

 

These thing in the photo. One other poster had their correct name I think, resistance bands. They come in a pack of different colours for different resistance.

But what you are doing with a lap lap sounds good. I started of with a rope.

I know how you feel about walking, it's terrifying when you can't make your legs work.

I just layed there in agony and worked and worked (mainly the right leg, as most nerve damage), and willed my toes or something to move, then after about 3 or 4 months I noticed a small flicker of my middle toe, then things seemed to come back fairly quickly after that.

 

 

 

Sent from my SM-J700F using Tapatalk

 

 

 

 

Thank you for the picture, will try to find out where to buy them.     I live 50km south of Khon Kaen so may have to buy online if not available.

Happy to hear you finally improved and continued good health.

 

I took no medication in hospital, ( I have multiple drug allergies including antibiotics ) much to the chagrin ( if I can use that word ) of the doctors.     I obviously had to sign away my rights regarding antibiotics.     When I had my first TIA back in 2012 I made out a DNR, following discussions and agreements with my children back in the UK, which was already on file at both hospitals.    I also carry full medical details and a signed original of the DNR form with me wherever I go and, the hospitals have updated copies.  There is also a copy on the wall of my house clearly marked with a big green cross.

 

The doctors at the hospital could not understand why my general state of recovery, including managing to fight off two infections, was possible, guess my body has / is learning to fight its own battles.   I had been told that I would need 2 - 3 weeks more in hospital but I declined because I knew I would improve more rapidly at home.     However, I must say a big thank you to all hospital staff for there rapid response in providing the essential re-hydrating drips immediately on arrival.

 

Once back at the house for pain relief a friend administered acupuncture, I was also then able to use other complimentary approaches to care and recovery.

 

 

[Speedo1968]

On 7/15/2017 at 8:11 PM, Sheryl said:

Per his post, the muscle loss is due to rhabdomyolsis, presumably secondary to the prolonged immobolity after he lost consciousness  compounded by dehydration/heat stroke. So more than stroke involved here.

 

Presumably the acute phase is past, but you should still carefully adhere to follow up visits/lab test schedules.

 

There is no magic bullet for recovering from this. Good nutrition - including plenty of protein provided  your kidney function is now normal - stay well hydrated and regular exercises. Work with a physiotherpaist would be ideal but if not possible,  then try to at least have someone with you to help prevent falls. Walk several times a day, using a walker (get one if you don't have one) and try to gradually increase the distance. Once you are able to go short distances, a good trick is to have whomever is helping you walk alongside carrying a small plastic stool, when you get tired, sit on it and rest before continuing on -- this method enables you to walk further secure in the knowledge that you can rest before coming back, or mid way as needed.

 

As soon as you are able, forego the wheelchair in favor of walking with a walker as this gives more of a work out.

 

Practice arm lifts - both arms straight up and arms out with elbows bent then lifting. Once you are able to do this empty handed, try it holding small objects (can of food etc).

 

Don't push yourself to the point of pain or exhaustion. Slow and steady is the key, and multiple times a day.

 

Good luck

 

 

Many thanks "Sheryl" for your informative and interesting reply.    My apologies for not posting a response sooner.

Yes, stroke first, followed by rhabdomyolsis then acute renal failure.

Added to dehydration and heat stroke should, I think, be shortage of oxygen over the 48 hours.

My creatinine levels reached the normal level when dialysis is required, which is why ( or one reason ) the hospital wanted me to stay another 2 - 3 weeks.   This being the expected time required for dialysis treatment for my condition.

 

I learnt to keep myself well hydrated having worked in extremely hot and dry climates for many years, even in high humidity climates I am very aware not to be complacent and drink at least 2 litres or more of water per day.    Could it be that a sudden loss of fluid intake affected me worse because I was normally well hydrated ?

 

Unfortunately a physiotherapist is not really an option.     I exercise both top and bottom of my body using for example a couple of lap laps tied together.   Or other simple exercises.   Even now that I can stand for short periods I use the wall to stretch.

 

Not keen on a walker as I am afraid of falling forward and my balance often tips slightly backward.

I also find that small steps put extra stress on my left leg knee joint and, are very tiring as against the normal motion of a walking step.

I am pushing my wheelchair keeping my head in a normal walking position, the first 100 metres is done slowly to limber up the, each following 100 metres I start to increase speed and therefore rhythm and flexibility.    I have been setting myself a target distance for each week increasing by 100 metres a week.    If I have pain or severe discomfort on a particular day I stop.

What I have found extremely good is to walk on grass barefoot.    This stimulates feeling in the feet / legs, aids balance by freeing up the arms, the disadvantage is that I tend to look down for any change in the level of the land.   It also teaches you how you normally balance your body and I think will come in useful should I fall.

 

Good idea about using a weight in the hands when doing arm lifts.

Wish there was a swimming pool, unfortunately transport is a problem.

 

My diet, despite being a vegan, IS very good; I have a friend who comes to my house with my meals ( herself a vegetarian / vegan ), the range of healthy shakes, many including locally picked wild fruits and leaves is fantastic, as are the meals.    I start of the day with a healthy shake, I have a main meal twice per day.    The foods include some spices such as nutmeg, cinnamon, black pepper, a trace of chilli etc.    The meals if it is possible take account of the weather.

 

In reply to your later posting, for emergency medical service you dial 1669 in my location.

 

I live alone which is why I wasn't found for 48 hours.    My friend who normal came some days of the week was away at the time.   They have a key and there is a spare one outside.

 

Good idea about using a wall for exercise, have tried standing sideways on and stretching but not thought of standing in front and leaning.   Thanks for that tip.

 

As you rightly say, patience and persistence.   Could I also add to that, don't forget your mental needs i.e keep your brain occupied by reading a book, board games if you have partner, and listen to radio programs not watch videos.

[carlyai]

When you do feel it's time to progress from the walker, there are Nordic Walking sticks you can get, which helps balance and upper and lower strength and fitness.
There are also small ankle and wrist weights that you strap on.
I mention these now, as you may like to Google them and do some motivational planning. Even though you seem well motivated.


Sent from my SM-J700F using Tapatalk

[Speedo1968]

On 7/16/2017 at 3:47 PM, tonray said:

Wheelchair heights are adjustable, I used to care for the elderly and if you have someone handy with a wrench you can adjust it so you can reach the floor which is far better long term.

Sorry for delay in replying.

Can find no way to lower chair.

The one I have has a place for a 'commode' under the seat, it slots into a separate seat, with the main seat on top.

Although the top seat is well made it still dips slightly in to the commode seat and, I have to put a liquid filled rubber support seat and a cushion to make it comfortable.   This raises my position by about 3cms.

The chair has swivel foot rests with leg support.   The foot rests can be adjusted with an angle to suit the length of the leg but, not up and down in height.

I can just touch the floor with the tips of my toes.

I am 165cm tall, maybe the chair is for taller people ?!

 

Although the muscle loss was / is very bad in my legs I have stuck to my weekly goals.

I use the wheelchair as a walker.

This week I have managed 700 metres walking non-stop ( safe flat concrete road in private group of 6 houses, where I rent and gardens all around ).    Have even run a few steps without thinking.  Need help to get wheelchair in and out of house.    Will increase distance weekly but if my legs and feet say "no" I agree.

Spend 15 minutes unaided walking barefoot on grass to stimulate feet and legs - works wonders.   

Can now stand and walk unaided around house for short periods of time and do exercises for top body and legs 3 times a day.

The important thing is to be positive.

[tonray]

Height adjustment is done by removing the wheels (small and large) and re-attaching them to a higher sprocket. Maybe your chair is a specialized one but should be possible.

[Speedo1968]

58 minutes ago, tonray said:

Height adjustment is done by removing the wheels (small and large) and re-attaching them to a higher sprocket. Maybe your chair is a specialized one but should be possible.

Thanks for that 'tonray' will have a look see.