Coaching: Student with Rheumatoid Arthritis

[qatet]

I have a new student in one of my classes, a college-aged girl, with moderate to severe rheumatoid arthritis in her legs. It makes it difficult for her to bend her knees or move her feet apart more than a 6-8 inches. She's clearly a bright girl, and enthusiastic and driven. I'm looking forward to seeing what we can do together, but I thought I'd check in here and see if anybody has any experience that they can share with me in this arena. Honestly, I know very little about arthritis other than what I've since researched on the internet. I do know that exercise, as much as is possible, is a good thing for those with arthritis.

Does anybody have experience either coaching a student with arthritis? How has it changed your usual approach to coaching?

Alternatively, does anybody have experience with learning to fence with arthritis?

[mackillian]

One thing that might help would be to speak with her about it and perhaps have her talk to her doctor about what could help with sports activity, etc.

[DonnaP]

I'm a therapist and work with Rheumatoid arthritis (RA) patients. RA is an autoimmune disease where your body attacks it's own connective tissues - in joints this means they become very unstable over time.

My first concern is that she is young. This may mean she is in denial regarding what her body can/cannot or should/should not do. RA can be cyclical - patients often have flares and quiet periods. If she's in a remission period - her body can handle more activity. If she's in a flare - (the joints will swell, get red, etc.) some activity may cause permanent damage. Typically exercise for these individuals is of the lower impact kind - such as swimming as it doesn't tax the joints as much.

As a hand specialist - my first thought goes to her grip - you didn't mention which weapon - one of the worst things you can do to a rheumatoid hand is put pressure on the fingers in the direction of the small finger. I would probably stay away from epee due to the weight and the pull toward the small finger. Foil has the same problem but at least less weight. The saber grip would be the best - but the impact may be a problem for her. Any grip she uses should be built up and as large as she can handle to lessen the pressure to the finger joints.

BTW - I think it's great that you are willing to work with her and agree that it is important that you have good communication with her and her medical team regarding her limitations.

[smurfette]

Hi --

I have struggled with juvenile rheumatoid arthritis (polyarticular -- which means my whole body) since I was 11 (not diagnosed until 14), and when I was quite young, it was so bad that I had trouble walking. I am still on quite a lot of medicine. BUT it is something that I manage, and which has, as I have grown older, gotten better. Fencing is the first competitive sport I have been able to do successfully, and for that reason, it is wonderful. I could go on forever about my own experience with JRA, but because your question was regarding fencing (coaching), I will focus on that.

A few things to keep in mind: JRA fluctuates radically, and numerous factors contribute to "flare-ups." While they don't know what causes it, JRA is an auto-immune disease/ condition, and as such, is very susceptible to both environmental factors and STRESS. WHen I was in high school, I would always have a flare during exam period. So, keep in mind that your student will have ups and downs with her condition, and this can be very frustrating if she is trying to be competitive. When I was younger I could never do a competitive sport seriously, because I never knew what condition my body would be in. The weather, stress, the time of day (morning sucks!) -- these will all play into how she is feeling. So, as the earlier post mentioned, it is important that she be sensitive to how her body is feeling. It is also important for her -- and you -- to be forgiving of whatever limitations she does face.

That said, I will also emphasize this. I was lucky to have a rheumatologist who never held me back and who encouraged me to push myself as much as I wanted to physically (which was a lot). And this was a real gift. Arthritis affects energy level and mobility, and some days even getting out of bed can be difficult. BUT staying active, mobile, and strong has saved me and has made my arthritis better. LET YOUR STUDENT SET HER OWN LIMITS. If she overdoes it, she will not cause any long-term damage. The fact that she wants to push her body and be athletic will, in the long run, only help her condition by ensuring that she is active, mobile, and strong. I always pushed myself too much, and my rheumatologist (who is wonderful) has only ever encouraged me in all of my athletic pursuits. While I have had to learn to be sensitive to my body, the body sets enough limits without my creatinmg psychological ones. And people who have to manage chronic pain are very used to reading their body and taking care of themselves -- they have to be.

Finally, some concrete things to be aware of. First, even as my arthritis has improved immeasurably, I continue to encounter a strong tendency toward soft-tissue inflammation, and this has caused problems for me. The inflammation in the joints also affects the tendons. So, your student will have to really pay attention to any pain that emerges related to fencing in order to catch inflammation before it gets bad. I recommend cross-training and physical therapy as a way of strengthening. This reduces the impact and stress on both joints and tendons. Secondly, most likely, she is going to need more recovery time. She should make sure to build a couple of rest days into her training schedule.

Managing rheumatoid arthritis is a fine balancing act between pushing yourself and knowing when to say when. It is hard. Please PM me with any more questions. But there is no reason that she cannot enjoy fencing and even be successful at it.

[smurfette]

I just re-read Donna P's post, and I saw that it seems that I might be wrong about permanent damage -- and she would know better. But I will say that I pushed myself way too much, and I was fine. My doctor - one of the top rheumatologists in the country -- never did more than give me a slap on the wrist for overdoing it.

[BrianH]

Really an inspiring story, Smurfette. Thanks for sharing, and best of luck to you in your fencing.

You won't hear any more complaining from me about my osteoarthritis and tendonitis issues...RA is much more serious.

Brian

[misha]

Originally Posted by qatet

I have a new student in one of my classes, a college-aged girl, with moderate to severe rheumatoid arthritis in her legs. It makes it difficult for her to bend her knees or move her feet apart more than a 6-8 inches.
.....
Alternatively, does anybody have experience with learning to fence with arthritis?

Disclaimer: I am not a Doctor, just have some unpleasant experiences myself

1) There are all kinds of arthritis, so I would double check that she has a rheumatoid one
2) Unfortunately science does not know much about nature of arthritis, what causes it
3) So most of doctors will go after symptoms, and would not try to find real cause of it.
They will tell you - you have less pain today, what else do you want?
4) Make sure that you know about all joints that are affected...
may be knees are giving her most problems and she did not mention other ones that are "less" of a pain
5) Back pain is not uncommon... heels, toes, hips, shoulders - you name it
You would be surprised where it can hit: places where ribs connect in front and in the back
6) It is hard to make any plans because you never know when you will have a "surprise"
7) That's why you need to manage your and her expectations... It should be about having fun in the process... I would not recommend setting specific competitive goals...
8) Make sure that she warms-up properly
9) I am religiously strengthening my back muscles and maintain my back flexibility... I think I can live productive life with dysfunctional arm and/or leg but if you have dysfunctional back it would be another story
10) Good luck and have fun!

.

[qatet]

Thank you all so much for your replies (and keep 'em coming, please!).

One clarification - the description "moderate to severe rheumatoid arthritis" is her own description.

Part of what I'm just beginning to learn is what questions I should be asking her, particularly in regards to figuring out the extent of her arthritis.

[DonnaP]

I noticed one thing - you didn't mention your current age - (and I won't ask you too ). Having worked with many top rheumatologists - my greatest frustration has always been that they don't always deal with the prevention of joint destruction. In my conversations with them and even at national level conferences many RA docs don't seem to believe that eventual joint destruction is a preventable issue. In truth, there is not much hard scientific evidence that joint destruction can be prevented - so my experience is only from what my 20+ years in the field of hand rehabilitation can offer. When the patients hands reach a point of being non-functional, the RA docs will refer them for surgery - unfortunately we only see these people at their worst many years down the road. As a therapist, I truly believe that good care of your hands now will keep you functional and away from disability and/or surgery for a longer time. As you so well stated in your earlier post - knowing what you can do and when, respecting your body and giving it the rest it needs is a key point. I do think that grip size and shape are key and should be considered and I too agree that keeping active under a controlled and guided program is great for the body, mind and soul. I wish you many years of good fencing!!!

[DonnaP]

Ah Smurfette - just saw on your public profile that you are indeed still very young!!! My only concern for you would be that you are an epee fencer - (you really should consider saber - the dark side is much more exciting!!!) - but seriously - watch the gripping - the pull and weight of the epee would all be on the "bad for your hands" arthritis list.

[alan swan]

I am a long time epee fencer, and now a coach (for about 5 years now). I have rheumatoid arthritis also. I have a fairly mild case and very few people even know I have it. Your student has to listen to their body and not over do it. Joint pain/damage is only a part of the disease. Fatigue is also a big problem. But, I would also be sure they do not use it as an excuse either. I would hope they push themselves to become better (within limits obviously). Exercise is good! Make sure they have a good rheumatologist. I finally found a good one after trying 3 others. There are a lot of new drug therapies and the doc needs to find the right one for them. One thing that really affected my fencing is how the drugs affected my concentration. I had a period of about a year where I physically felt good and was training hard but could not focus mentally enough at tournaments to get the results I should have. It was very frustrating. I did not equate the mental fog to the drugs I was on for way too long. Since it is an auto immune disease, the drugs suppress the immune system. I get sick a lot and its hard for me to put in an extended period of training at a high level without coming down with some illness or another. This is where not overdoing it becomes very important. This disease can really suck. I feel I am always walking a tightrope, balancing work/fencing/life and the pain/fatigue/etc. PM me if I can help more. I always read this forum and never post. This one just hit home.