By Jill on Tuesday, November 07, 2000 - 09:29 am:

My daughter who is 4 and has EDS has been in physical therapy since September, but at times it is causing her incredible pain. I was wondering if anyone else has tried physical therapy to strengthen the muscles around the hypermobile joints. We are going to see a pain specialist in December, but no pain meds work when she has pain from her PT, not even codeine. I am wondering if there are PT's who do different things for EDS, what I should do. Please help.

Jill

By Lin on Tuesday, November 07, 2000 - 07:13 pm:

sorry i cant help, i jsut wanted to say i have hms, not sure if i am as severe as eds yet, seeing a rheumatologist and an othopedic surgeon about that very soon, but i am supposed to get physical therapy for the hms, because of chondromalacia patella, and have heard bad things about it. so, if you know anything about physical therapy, bad or good, i would be very gratefull for any information you share!

By Lynn on Wednesday, November 08, 2000 - 07:03 pm:

Hi Jill and Lin! My daughter Kir (16 yrs) has EDS III and exercises to strenghthen her muscles, which in turn should help support her joints. Her situation is probably quite different from either of your's, but then every person is unique anyway! She finally found a PT (third one)who could help her, but the process is very much trial and error. For Jill- you're really going to have to be your daughter's advocate- be with her during all therapy, ask questions, keep your eyes and ears open. Young kids frequently won't speak up around new adults- she might not tell the PT that something feels funny or even hurts because she wants to be good! My daughter would always complain after the fact and with EDS, that's too late. Also remember that the PT is an expert in his or her field, but YOU are the expert on your daughter- don't be intimidated! For both- only exercise in the middle of the "range of motion" of each joint. In other words, don't fully extend a joint against resistance (whether weights or stretch bands). You'll be less likely to damage or overstretch an already loose joint. Lighter weights, more reps are better than trying to lift too much too soon. Give the muscles time to recover (24-48 hours). Kir rotates- upper body one day, lower the next. Slow progress is still progress; don't compare your program with anyone else's- especially if they don't have EDS! I personally like stretchy bands instead of weights. Also simple things like squeezing a big sponge to strenghthen fingers/hands. The secret is to exercise faithfully and never try to acheive too much too soon. If you find a pain med that works, take it before you exercise especially if it's an anti-inflammatory. Good luck! Lynn

By Lin on Wednesday, December 27, 2000 - 01:55 pm:

its been a while i know, but wanted to know if i could help any. i am in pt, and have been for a while. it has helped the stability of my knees a little bit, but my pt says i have a long way to go still. what helps is you must be very vocal, not all strengthening exercises work for HMS and EDS people, i also have EDS and am waiting for a confirmation on my self diagnosis, as i am sure i have it. some things my therapist wants to try with me, i cant do, for pain, or unstable joints. i let her know if it hurts, and she finds something else. she aslo has to tape my knees, because progress was going too slow and my knee caps were all over the place while exercising. no pain meds work for me either, its because of the EDS, i wish i had the url but i read an article about some research done that showed EDS versus begnin HM that pain meds dont seem to be effective in EDS patients. I am on anti inflammatories, and those do work, and lessen the pain some because it realy helps the stiffness caused by swelling. hope i was of some help, being its been a while since the original message!
Lin

By Barbara on Sunday, January 14, 2001 - 04:16 pm:

I have used physical therapy mostly for joint injury. What has worked best for me is osteopathic manipulation, TENS, and massage.

For joint strengthening, I use light exercise - water aerobics and low weight training (low weight, increasingly higher reps).

By Ella on Thursday, February 01, 2001 - 07:16 pm:

Hello,can any one tell me " Do you have oral problems,reason EDS,would like any info or a link.My Insurance does not believe I have this Problems with my teeth Because of EDS so they refuse to pay for removing 19 teeth I have left and they are all ratten and I suffer with them for 51/2 years,as I dont have the money to pay a surgeon and over night hospital stay.please help me.
thank you . Please send info to my email EAng@msn.com

By El on Friday, February 02, 2001 - 12:58 pm:

I have a pt that has worked great with me. We use a balance ball for all excersises. It has worked great. I also use in to relocate ribs, hips, and vertibre. Everyone responds so diffrent. We started trying other excersises for balance and strengthing but the were hurting so bad I was unable to do them. Then we found the mircale ball as my pt calls it. I also have EDS III pretty bad. You are a great mom to be helping your little one. My parents tuned me out to being a hypercondriact.

By Michelle on Sunday, February 18, 2001 - 12:18 pm:

I have EDS3 and my physician is sending me for physical therapy due to apparent tennis elbow problems WHICH I GOT SITTING IN MY RECLINER, lifting my computer to my lap. Actually the whole arm is involved. I suspect that the pt will not be acquainted with EDS...I will bring him/her some information but does anyone have any advice about some pt that would help my arm.

While I'm posting does anyone else have trouble with extraordinary pain in their toes after a few minutes of cycling. First numbness then PAIN. Use orthotics, tried different shoes even had a neuroma taken out but it apparently came back. I love to bike but every where my body touches the bike ends up painful after a short distance. Any ideas?

By Sheena on Monday, February 19, 2001 - 03:11 am:

Michelle, Sorry I am not answering your questions. Can you tell me about the op and especially the recovery from having the neuroma removed? Was it Morton's neuroma? I have one which is getting worse. How long did it take to walk after the op? Are you glad you had it done or not?

By Bernard on Wednesday, May 16, 2001 - 12:31 pm:

Greetings from Bogotá,
Our son is eight years old and has been diagnosed with EDS. We don´t have access to more data or Doctors here in Colombia concerning EDS. We would tremendously appreciate any contacts with Doctors there in the States. We desire to take our son to America to have a complete examination and also to been better informed ourselves. Please feel free to send any data suggesting where to make these arrangements.

Saludos y un abrazo,
Bernard Uresti Rojas

By melissa on Monday, July 16, 2001 - 09:15 pm:

i have hms and my pt has me working on my posture alot. it is all messed because i accentuated it with 10 years of gymnastics! last week she taped my shoulder blades and it has helped tremendously. (if i could only remember not to lock my knees.) i have an incredible amount of pain, but it has been much better since i started pt. pain killers do nothing for me now.

By Pat on Sunday, August 26, 2001 - 09:32 pm:

Bernard, I am sorry no one has answered you sooner. I have just returned to the US from the Philippines and can only advise you to try reading the answer to me under the "doctors" heading. I tried to contact doctors by telephone from abroad, but had no success. I would suggest letters through the postal service. We are currently working on an appointment with geneticists at UCLA. I'm not much ahead of you! Best of luck.

By Andrea on Tuesday, October 02, 2001 - 01:04 pm:

Dear Jill

According to the date of you first posting here, your daughter is now 5. So is mine. I felt sick reading how much pain your daughter is in. Have you found a solution, and alternative? I am a former sports teacher (with HMS) so I would be very much inclined to say that no child (no creature, for that matter) should experience that level of pain. How much does the PT know about EDS? Have you contacted the EDS people (try the Internet, search under EDS or Ehler-Danlos)? Please do not think that you need to continue with your daughter's PT if you feel uncomfortable. Have you tried water? Swimming is an excellent way to improve muscle tone, even just moving around in water. Best of luck.

By Barbara on Sunday, December 23, 2001 - 08:56 am:

Andrea,

There are several sources for info on EDS. The most notable are:

EDS Today
http://www.edstoday.org/

Ehlers Danlos National Foundation
http://www.ednf.org/

EDS Support Group UK
http://www.ehlers-danlos.org/

Canadian Ehlers Danlos Association
http://www.ceda.ca/

CEDA Email Group http://groups.yahoo.com/group/ceda/

-Barb