Seeking Exercise Support Group for Sjogrens/Autoimmune

[CureSjogrensNow]

Anyone know of an exercise group for autoimmune patients? I am thinking of something like the Livestrong program for cancer patients? Thanks!!

Separately, a clinical trial on diet and/or exercise for Sjogrens is also of interest.

[irish]

I'm just going to throw in my opinion. I need to exercise really bad but am having a lot of pain in muscles and joints right now so will have to put it off til I feel better. I do a few little things here and there but never more than 5 repetitions on days when I feel up to it.

I did want to tell you that I did the Pilates thing several years ago and it really helped me. It is low impact and helps to build core strength and also increases agility. I am waiting to be able to do this again. Also, the big exercise ball is low impact and helps to increase agility and strength just by rolling around with in in any way you see fit.

I do want to add that I had a doctors order for pt exercises at the hospital with low impact exercise and I went one day. I was exhausted and down in my chair for the next 2 weeks. Not everyone understands the fatigue and weakness that goes with autoimmune diseases. Good luck. Irish

[CureSjogrensNow]

Irish,

Thank you for your prompt and responsive reply. Have you heard from others about any such group that may have different levels of participation? Including a low-impact group?

[SjoDry]

CSN,

I am currently researching and about to start a program called Qigong (pronounced CHEE-kung). It is similar to T'ai Chi. It is breathing; positions & movement along with meditation, like a slow fluid dance of sorts.It is supposed to be amazing for chronic pain; fatigue; depression, etc. It is best learned from a Master. If you look for it, search for someone who offers medical Qigong.

The book that I read gave examples of people who were cured of cancer; aids (or back into remission). It is a Chinese approach to healing. If you're as fed up with western medicine as I am, this
form of exercise looks wonderful. Easy & gentle enough that it won't kill me and may really help a lot.

If you are interested, watch this neat Youtube video...I was mesmerized watching this woman: https://www.youtube.com/watch?v=59p4Ho2flhk (does take her several seconds before starting)

*** Pricing: I have only checked with one place local to me. They have group classes for $110.00 per mo. for tuition and separate pricing for private lessons: $60.00 for an hour & $35.00 for one half hour. Not sure what pricing may be where you live, or from instructor to instructor.

Best of luck to you.
Take Care.
SjoDry

[CureSjogrensNow]

SjoDry,

Thank you so much! I will search for same. Do you have any idea if it is expensive?

[irish]

Every group in my town is geared toward people who have better health than I do. Mo groups are for people who are in the work force and want early morning or after supper exercise groups. I know a lot of the people leading the groups and they are more high impact and weight loss approaches.

There is one group that is for retired people that is slower and more low impact and they are still more than I can undertake. At this point in time I am not in shape to even take part and when I do improve (hope) I think that I would do better just doing a small amount each day or every other day. My energy level is on the floor.

I hope that all of you can find some place or some one to exercise with. Irish

[SjoDry]

Irish,

I saw one exercise program on DVD that is for seniors and all exercises are done from a sitting position. Actually, that is my speed right now.

SjoDry

[KatieB]

Hi,

  I was in a sitting yoga class for a little while and it was pretty perfect with regards to my energy levels. I would have continued it but the lady holding the class moved. It cost about $60.00 for a 6 week session, which I didn't think was bad. You might try something like that. My sister and I took it with my mom, who has trouble walking, and we were definitely the youngest ones in the class! It was great though, very calming, and where I needed to start right now. It was held at a chiropractic office, but you could try the rec center in your area. There are also a couple videos on amazon prime which looked promising.

I've heard Qigong is great, but I've never tried it personally. Good luck with finding something that works for you.

                   Katie

[SjoGirl]

I have used at home Yoga DVDs in the past, but have neck and back issues and found I can't do all of the moves.

I just finished around of PT not that long ago and was given exercises that helped. Because I wanted to continue to exercise so visited a fitness club that employs people training in Kinesiology (we have many of them here due to having a university that has a strong program). I am actually going to start working with one of their personal trainers this week then will probably move into a group of some kind because I can only afford so much individual attention.

This may sound odd, but we bought a Wii with the purpose of moving more in the winter. They have exercise dvds, but many of the games and other dvds keep you moving, e.g., dance dvds. That was the most fun and not that expensive because I bought a used Wii Fit board and bought used dvds as well.

You might also check on availability of arthritis foundation approved classed in your community (I think we sometimes forget that Sjorgrens is a form of arthritis).

[cccourt1942]

Going to a group is much more motivating.  Double edged sword however as we lack stamina...then we look around and that is depressing.  To "find" a group would require permission/support from a YMCA to present a low impact, slow progression program. Before my dx I bought a Pilates Performer machine.  I ached all over...my joints especially (duh).  I hired an instructor...she came three days a week for a month.  I had used the machine several times in specialized settings..but where I lived had no Pilates classes/machines.  Handling floor stretching (yoga) was too much for my body.  I was in my late 60s...well..maybe mid 60s.  Anyway..this worked great for me...until my costochondritis became chronic for a little over a year. 

In the midst of beginning all over, where I do stretching which is considered warm ups only, I suffered an injury..but not on the performer.  I was sent for "balance" physical therapy...and "pulled" my groin...which is actually the hip..and I now suffer chronic "pull" problem.  Cannot walk straight at all.  But ..the balance and strength building worked.    Am on maintenance for that for a couple of months now.  btw: my neurologist sent me for PT. 

I don't want to see an orthopedist as I am not interested in any type of invasive treatment.  If that isn't an option, they can't do anything anyway.

If you live where there is a Pilates studio, most will offer semi private lesson/packages..it isn't half..but reduced from private.  This is best as they can teach you safest way to use apparatus. 

I have seen the "chair" exercises advertised by YMCAs over the year.  Tried to get my late husband to join after a hip replacement.  No men in the group...he didn't want to go.  But that sounds civilized.  The other types mentioned are hard on me due to stamina in standing. 

I have one osteoporotic hip...and afraid to walk too far...yet have to be able to walk or can't take a trip..or for that matter--go to the grocery store!!

Remember:  classes for Livestrong/post cancer patients are aimed at younger people who "were" ill...but getting stronger.  It's great for a person getting better. We are static in our conditions..or have good days/weeks followed by less than optimum days/weeks.

Good luck.  This topic comes up periodically...and one with which we all wrestle.
c3

[trejonina]

Hello. Even if you can't or don't have time for exercise Breath ,Prana is of utmost importance. Google youtube+ Yoga workout for happiness , Mandy Ingber Fitness. In  0:28 time she teaches a Happiness Breath which is simple , if you can't exhale bending down just exhle thru your mouth. You can do it even bedridden.

[Nymph]

Wonderful gentle yoga series called "Yoga for Inflexible People" by Body Wisdom Media. I am 38 years old and often well enough to go on gentle hikes and do regular people exercise videos. However, this is my go-to when in a flare or times like now when I am just too exhausted from my life to do more.