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Ehlers-Danlos Syndrome Online Support Group

Type 3 complications. Who can relate?


#1

Type 3 complications. Who can relate?

Posted by Tina Amadio on June 1, 2015 at 4:44am

I have type 3. I’m 44 years old. I gained 30lbs in what feels like overnight. I know from this, is why I have plantar Faciitis. How can I work out, if it’s hard to even walk? My phys therapist is against cortisone shots, but my rheumatologist is the one giving them to me and is not against it. Granted, I can’t get more than 3 shots in one year as it can cause problems.I also have IBS for the past 1.5 years. Can anyone recommend the best probiotics? Best way to desribe this pain and discomfort… It feels like every day w/o hardly any relief, it’s as if I drank 40 cups of coffee on an empty stomach that hasn’t eaten in weeks. It’s a crippling pain. I had a colonoscopy recently to see what else might be gong on, but they found nothing in addition that’s more serious. But the IBS and plantar + weight gain is interfering with my life. I really need help and relief.This Jan I had elbow surgery for chronic tendinitis, w/o any relief from surgery & how is that possible? 10 years ago I had surgery on both wrists for this. A few months ago, I found out I have a stress hip fracture and liberal tear and was told to bear no weight on it for six weeks. I just got off the crutches a week ago.I go back to my job on June 8th. I’m very uncomfortable, in a lot of pain, and I seriously need help in losing weight. I just got these magnets to put in my ear to help weight loss. If it actually works, I’ll let you all know.I also have eczema on my hands and feet. Sometimes my feet itch so bad I have to rub them together fast and hard until they feel like they are on fire.life has to get better!! Thanks for taking the time to read this.Sincerely,Me

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Replies

Jay Jones ·June 7, 2015 at 5:56pm

Sympathy! I will tell you that of all the methods I have used to lose/maintain stable weight, the South Beach Diet works best for me. You have to say goodbye to bread and potatoes. I allow myself one helping of each per month. Good luck to you. My feet hurt, too. They flop over sideways in my sleep (I have slept sitting up for 9 years), and I don’t think it is fasciitis so much as little bones getting pulled in wrong directions all the time.
Best wishes,
JJ

Trish Williams ·June 3, 2015 at 11:18pm

Hi Tina, I too have all these problems. Take a deep breath and lets talk. You sound like me. You go to Doctors and just want someone to understand this problem of Ehlers Danlos. Try the web site EDASwareness.com. This site has a wide varity of webinar lectures that are amazing. The one on bowel problems explains a lot of our problems. This crazy medical problem IS REAL! Stress compounds every problem from itty bitty to overpowering. For the feet problems water therapy is wonderful. Therapeutic water (warm temperature) activity, therapeutic massage and acupuncture DOES work. I have a lady that does the ancient art of acupuncture and massage. This massage is not the spa type. It is painful but she is putting you back in alignment and working muscles that have not been used correctly due to the EDS. I have EDS hyper mobility and my husband has syringomyelia and had fractured his back and was septic with infection in his spinal column. He is partially paralyzed but can walk now and does not take any pain RX except one half of a Tramadol. Our Neurologist totally approves of this massage and acupuncture treatment. As a matter of fact he refers others to her. One more suggestion is for pain relief. Get an over the counter bottle of sun screen but make sure it has LIDOCAINE as an ingredient. Just rub it on the painful areas. Nothing harmful to you. Our Neurologist gave us a prescription for Lidocaine cream. It has more lidocaine than the sunscreen but a little goes a long way. I have just started to use Castile liquid soap. It is so soothing to my skin. It comes unscented or scented. It is all purpose in that you can bathe with it, wash your hair, use it on clothes, etc. I love it! I get mine at Health food stores or you can order thru AMAZON. Just a little hint on soaps. Sounds crazy but LAVA soap now has aloe and is not the gritty soap it used to be. I haven’t had cracked skin in years now from using it. Bless you and I hope you get some relief. I have not found a doctor that understands the EDS very well but I keep looking.

Nancy Oteri ·June 2, 2015 at 3:22pm

Something I recommend to people with hypermobility of any sort is hydrotherapy. It’s really the only way to get excersize without putting strain on the joints and tendons. If you can’t get hydrotherapy dx’d by a doctor, even just getting into a pool a few times a week with some basic exersizes and stretches (most can be looked up online) is a great help in building strenth and losing weight. It takes time and dedication, and can be hard on the skin because of chlorine, but if you can find some help for your skin it’s a great way to get it done. No weight on your feet, either. Even just walking back and forth in waist-high water is something. If you don’t have availability to a pool, a lot of hotels with pools will let you in for an hour or so during the week and those are usually heated. Some might have you pay a little for it, but it’s not like they get a lot of use most of the time.

Rachel Sandford ·June 2, 2015 at 11:15am

Hi I have type 3 too, recently diagnosed but have been suffering with many symptoms for years. For IBS I use Bio-Kult probiotics. They arent the cheapest on the market but do have many more strains in them than most. You may also need to try eliminating things from your diet, one thing at a time for a week to see if it makes a difference. These could be wheat/gluten, dairy, sugar, etc. sometimes this helps, sometimes it doesnt! I also have eczema badly in various places but on my hands and fingers its pretty bad. I have tried every prescribed cream available and none have done anything to help at all. I finally found something which helps and actually keeps it under control. Its called Skin Salvation, Pure Potions. It comes in ointment or in a bath oil which can also be applied directly to the skin (this it the one I use). Its entirely natural and is made from a mix of plant oils. Its available to buy or on prescription. Within a month of using it, my fingers which had been red raw and split had started to heal (a non EDS-er would probably heal faster), and now as long as I use it daily I can keep them from splitting and being itchy and sore. I dont have answers for the rest, sorry, but hope some of this might help you.

Dawn Laughlin ·June 1, 2015 at 6:50am

I have had P.F. for years now…get yourself some good orthotics. You can get them from a dr or even online, they send you the kit and you press your feet in and mail it back. I was in agony when it first happened, now as long as I wear the inserts in my shoes I have no pain. Sorry I have no answers for the rest, but this should bring you some relief. Oh, also, freeze a water bottle and roll your foot on it for relief, that also helps.