The second set of teleconferences was hosted by Shared Solutions and featured Jayne Ward, DO, Associate Professor of Neurology , Michigan State University. Her topic was Fatigue and MS.
She began with discussing attitude and that she knows there are two types of PwMS. The first are those people who acknowledge they have MS , but don’t let it rule who they are and what they do.
The second type is those people who find everything they do is overwhelmed by the fact that they have MS. It sounds like a simplistic approach, but echoes many of our previous discussions about maintaining a positive attitude, even in light of having this crappy disease.
According to Dr. Ward, people with the positive attitude are shown to do so much better than the people who struggle daily with living with MS.
She identified several causes of fatigue, which 80% of PwMS list as their #1 complaint –
1) Normal fatigue. Everyone gets fatigue - from overdoing something, lack of sleep, poor eating habits, etc. She talked about how even PwMS get normal fatigue and that is just part of life.
2) Deconditioning fatigue - this comes from stopping or slowing your activity level.
3) Neuromuscular fatigue is common to MS. This is a motor fatigue that comes from the short circuiting of our systems thanks to the demyelization.
4) Depression fatigue - Dr. Ward said this is not MS specific and can happen to anyone. Some clues that depression is the cause of fatigue is to look at other complaints - if you have problems with sleep, appetite (too much or too little), or somatic complaints, the fatigue may very well be from depression.
5) Lassitude - this fatigue is overwhelming and is the most common type of MS fatigue. She gave the example of you’re on the couch and your house is on fire and you’re debating with yourself whether you are going to move or not.
Dr. Ward said that she recommends all PwMS have a proper sleep study done – that sleep apnea and other sleep disorders are common in the MS population and are under-diagnosed. Seven hours of sleep per night is the minimum amount we need.
She recommends that we keep a fatigue diary and track the schedule - does the fatigue worsen at certain times of the day? Does the temperature affect the fatigue? How does the fatigue onset correlate to our medication schedule? The intent of the fatigue diary is to look at what co-factors might be present with the fatigue.
Strategies that Dr. Ward offered for dealing with fatigue include:
- Rest – schedule rest for the times you know you fatigue. Even if this means just a brief break, give your body the chance to recover
- Control the temperature – heat and cold can affect fatigue. Dress appropriately; perhaps get cooling garments if heat can’t be avoided.
- Exercise- she again emphasized what we know (but it flies in the face of conventional thinking) – exercise really does help with fatigue. She said we should start small – she starts her patients who haven’t exercised regularly on 3-5 minutes of exercise a day. She will then have them add additional minutes each week. She sets a goal of 20 minutes of exercise a day for her patients and it may take months to get there, but she says it is possible. The benefit from exercise includes the release of positive endorphins for our brains.
As with Dr. Karpatkin, the cost of ongoing physical therapy being financially difficult was brought up. Dr. Ward suggested that PwMS request a home therapy prescription from their doctor. This rx will allow you to meet with a physical therapist two times to develop a home exercise plan and a follow-up visit in six months to assess progress. She said that this home therapy rx can be done annually.
- Diet – she restated that there is no diet approved to help MS, but research shows that eating a heart healthy improves overall health and as a bonus can improve physical stamina and fatigue. It is known that diet can be a stressor to overall health.
She said that if these strategies don’t make a significant difference, then the doctors need to revisit the question of depression.
There are absolutely no drugs approved by the FDA for MS fatigue. Everything pharmacological that is given for fatigue is prescribed for off-label use. Dr. Ward said she would rather give a drug to aid in sleep than give a drug to stay awake. She said many of the anti-depressants (Zoloft, Prozac and Wellbutrin were the examples she gave) can help with fatigue, but unlike other drugs that work immediately, these can take 4-6 weeks to notice a difference (and sometimes up to 3 months).
Her approach is to first look at what co-factors can be removed/changed, including drugs rather than adding more.
Here is a summary of her major points about fatigue:
Fatigue is the #1 complaint of PwMS.
Fatigue is the #1 side effect of most of the drugs that are rx’d for our symptoms.
Fatigue is the #1 side effect of pain – so we should control the pain.
Fatigue is the #1 side effect of spasticity – so perhaps we need to change dosages and times for the spasticity drugs.
Fatigue is the #1 side effect of sleep disorders – get a sleep study performed and make sure the quality and quantity of sleep are sufficient.
Fatigue can be decreased through exercise, diet and good sleep habits.
Fatigue for PwMS is a given but can be managed with a comprehensive approach.
Thanks for a wonderful summary Lulu. I have just one clarification. I don't want anyone to misinterpret the statement under #2 that says, "Exercise aggressively - with MS taking it slow and easy is not effective for our needs." It is important for everyone to read your sentences that follow right after that one. They explain it.
Dr. Karpatkin was explaining that the old theory that PwMS should rest lots and exert little is outdated and inaccurate. He stressed that daily exercise, well paced WILL improve function.
I was struck by the example Dr. Karpatkin used of how PwMS need to structure sets of exercise. Usually, people in therapy are instructed to do three sets of ten repetitions. PwMS may be better off doing 10 sets with 3 repetitions each -- and a big rest in between each set.
He said we shouldn't exercise into fatigued muscles as that works against progress by limiting volume. Gains are lost if overly aggressive routines prompt pseudo exacerbations and days of inactivity. For the same reason, he suggested exercise rooms be well cooled or we should wear cooling garments during exercise.
I remember thinking several times that as mobility aids become necessary it must be important to develop new stretching and exercise routines immediately. As much as we need items to assist us with balance or distance or endurance, aids can rob us of strength and flexibility even as they serve us. Several callers in wheelchairs described pain or spasms that increased once they were confined to chairs.
Dr. Karpatkin was confident it is possible for PwMS to exercise out of a wheelchair. It was equally clear that living in a chair doesn't necessarily mean increasing disability or misery. I guess that's where a proactive attitude and strong self-advocating are so important.
I enjoyed reading the notes from Dr. Ward's presentation. I didn't catch that one until the last 15 minutes of questions. Thanks.
Thanks for adding the additional comments, Mary.
Dr. Karpatkin gave examples of people in wheelchairs - I'm thinking he said about 25-30% of the people who come to see him are in chairs - who were able to regain mobility through long, dedicated work in doing the necessary exercises.
Both doctors talked about the need to work smart in exercise and both gave examples of starting with small amounts, even if it is just a few minutes, and slowly adding a minute or two at a time.
I wouldn't be without my PT. I meet with her when I am ready to start something new or things she has suggest are not working. However, I warn that even with hard work (and I do work hard) you may find yourself still in that wheelchair or scooter. I am all about not blaming the patient but the disease. What exercise will do is strengten what is there. Keep you able to move longer. Give you a chance of not ending up in nursing care. I don't want to put a damper on things but MS takes what she wants. Keep positive. Keep moving. Keep trying. But DO NOT place blame on yourself or allow others to place that blame. It makes me physically ill to hear a so called professional telling MS patients that they can somehow overcome what MS wants to do......
Just my two cents...
Take the PT doctor up on his offer to answer emails and questions and send him your questions and ask your therapist to communicate with him about plans that might be used for you. He repeated this offer several times and is sincere in his desire to help anyone and everyone.
His comments were not about blame, but about not just accepting that we are going to be immobile from this disease.
When they get his talk posted on the website I will be sure to post the link so you can listen to his examples and ideas.
Heaven forbid Sumana. Don't get sick over this. Nobody was laying blame anywhere, especially Dr. Karpatkin. The man exuded compassion. I hope you take the opportunity to hear him yourself when the recorded presentation is available. Besides, I wasn't quoting him, only sharing my impressions of what was said.
I admit I should have proofread more carefully. Let me add a most important word to the statement. Dr. Karpatkin was confident it is possible for SOME (again - SOME) PwMS to exercise out of a wheelchair. I think that is significant, even if it is for short excursions in the house. What's to lose in trying something that can deliver potential gain with very little risk?
It is certainly possible to exercise IN a wheelchair. That was the real point. Using a chair or scooter fosters joint and limb immobility even as it increases a person's ability to remain active in life. Chair ambulation means joints stay flexed for extended periods of time. That promotes spasticity and contractures unless there is a specific plan to stretch and move frequently during the day. It is as much about stretching muscles and tendons and ligaments as it is about strengthening. All bodies benefit from movement.
You haven't dampened my enthusiasm a bit. MS can try to take whatever it wants. It will most likely get plenty. I'm not giving anything away.
Thanks for doing that, its always greatly appreciated!
I dont know if i'm doing it right or wrong, but from my perspective fatigue is the only thing that stops me from activity, exercising and sometimes even stretching. When its here I just have to bide my time, ride it out and once it starts to lift, i can start to 'do' until then a trip to the loo is energy wasted, even thinking is energy wasted lol.
I really feel there are different types of fatigue, One type of fatigue you experience from doing more than your body can reasonable cope with, heat, depression, attitude, drugs etc. all play a role but this type of fatigue can be altered by changing internal or exteral factors. The second type of fatigue has nothing to do with you, nothing you do or not do will change its course. It hits you 'baby big time', coming and going when it does and you cant do anything about it, it is just here!
I sort of get miffed at the theory of how to combat fatigue, the suggestion is that If you do more it will be different or better for you and thats not totally true. Type 1 yes but type 2, i do more and i am worse. To suggest i'm not doing enough physically when i'm in fatigue type 2, just frustrates me even more. If I could I would, and there is absolutely nothing I can do about it. The should, would, could and want, doesnt make a damb difference to the reality of type 2 fatigue.
Fatigue type 2 for me is constantly fighting gravity, energy is spent doing the basics, like sitting, talking, standing etc lol making a cup of coffee is a work out, well my body reacts like one! As soon as it lifts i can go back to keeping stretched, healthy and active but when type 2 fatigue is here, all i can 'do' is sleep and ride it out. Being told to keep moving or do more exercise, just doesn't sound like there is complete understanding of what fatigue can really be like or just how bad it can get.
I'm a move it or loose it thinker, got enough endorphins to happy a small nation, i sleep 2-3 hours for ever 3-4 hours of being awake, muscles will spasm or stick, stuck muscles hurt and dont not hurt unless i rest it, use it and it just hurts even more and from doing less. Fatigue type 2 is not something i can push my body through, it is in total control and i bide my time until it lifts.
Maybe i am doing it wrong but I cant seem to do anything more than I am, which isn't much at all.
JJ - the fatigue you describe is what Dr. Ward talked about as lassitude. If your house is on fire, you would have a debate as to whether you could actually move off the couch. That type of fatigue is one you have to wait out. That is a fatigue you can't bully yourself through - and both doctors talked about having to stop with that until it passes.
The other 4 types she describes are the fatigue that both doctors talk about adapting ways to overcome. They were clear about the different types of fatigue and what each one does to us - I hope I didn't gloss over that in my notes. And they both were emphatic that we must start slow. If we try too hard, we just make our fatigue worse, we feel defeated and then give up. Dr. Ward said she literally will start some patients with 2 minutes of exercise a day and add one minute more each week.
Both also stressed that when we feel the fatigue starting to revisit us we MUST stop immediately and allow our bodies to rest. And then resume the exercise when our systems have recovered.
Dr. Karpatkin is not a neurologist but holds a PhD in PT. Of course you can exercise from a wheelchair. You can also transfer from a wheelchair to a recumbent bike or other equipment. Sometimes those pieces of equipment have to be tailored to the patient...many of the things I use have been.
I only read what was said here. I haven't seen the entire thing. However, reading the above makes him sound like a guru that has all the answers and that he is capable with his method to get us all up walking. Now with more information it makes sense.
And by the by, I do still walk with the help of a walker. However, there are days I am only able to use the scooter or motorized chair. On those days I still get on my equipment and exercise. It doesn't take a brain surgeon to know lack of movement only brings more pain.
You can't possibly believe that there are people out there working their buns off yet lose nerves that can't be repaired nor can they find a new path that will fix it....This is especially true of those with a heavy load of spinal lesions.
Here is a short easy to read article from the American Journal of Neuroradiology that talks about the level of disability in those with spinal cord lesions and my guess would be the heavier the load the more likely the disability. If I had the time or patience, I could find many studies to back this theory up. I don't so I leave it to you.
Again, we have too many professionals (PT's, PCP, Internists, etc.) that see MS as only a disease of the brain and naturally assume we all should be responding like **** and Sue. Well, we ain't all **** and Sue. These professionals need training before taking on an MS patient. Why? Because they can do so much damage not only physically but emotionally. I have had both types. Today I can look those kind of doctors in the eye and question them on their knowledge. Most have no clue.
Yes, Dr. Karpatkin is a doctorate level physical therapist with speciality training in MS as was stated in the original post. He has treated many patients successfully and is certainly qualified to have an expert opinion.
I enjoyed the teleconference presentation, learned a lot and stopped by here to share a bit of what struck me most. Anyone wanting to listen to a recorded version of the teleconference can do so when it is posted on the MS Foundation website. That would be the best place to get a real feel for the type of exercise activity Dr. Karpatkin recommends (it's not body building gym work). For those not inspired to find out more, that's ok too.
No need to explain or defend yourself. Excuse me for stating the obvious. It isn't clear to me what is so disturbing here.