Patient Comments: Ehlers-Danlos Syndrome - Treatments

Question:

How was your Ehlers-Danlos syndrome treated? Submit Your Comment

Comment from: erink, 35-44 Female (Patient) Published: February 15

I've had 3 successful procedures that have greatly improved my pain and mobility issues. After a decade of being misdiagnosed and treated for rheumatoid arthritis with chemotherapies and biologics I sought one last opinion and finally a new, young rheumatologist shed light on what was wrong. This Ehlers-Danlos syndrome had been the problem all along. My leg pain was most disabling (could not even stand long enough to shower) and my doctor decided to do ultrasound guided injections to both knee bursa with steroid and lidocaine. The same treatment was given all along the ligaments in both feet and ankles as well. After a few weeks of healing, I was very aware that my pain had decreased significantly. This was 5 years ago already. Last month I had a procedure on my veins in my leg since my vessels and veins got incompetent and too wide; endovenous thermal ablation. It took a month to recovery but now my pain has decreased by about 60 percent, which is major. For the 1st time in over 10 years I can at least hold a job now and depend for the most part, on my body. I'd suggest talking about these treatments if your problems are similar.

Comment from: James Aquila, 35-44 Male (Patient) Published: March 22

I have Type III Ehlers-Danlos syndrome, which I inherited from my father. I have been using Solomon's seal and hyaluronic acid to support my joints, tendons, and ligaments. They are really helping with the inflammation, spasms, and pain. They do not provide total relief, but are worth the time and effort. I also take prescription medication because supplements can only do so much. I only use the supplements with the full knowledge of my physician to prevent any unwanted interactions.

Comment from: christielucy, 35-44 Male (Patient) Published: December 02

I had a karmic reaction when I was pretending to kick some one. My hamstring tightened immediately and I hobbled off quite defeated. The pain is in my hamstring but travels through around my hip into my groin. I am not sure if I should bother my doctor with this but some movements cause light popping even now.

Comment from: Cheryl, 35-44 Female (Patient) Published: April 30

A couple of years ago I finally found out I have Ehlers-Danlos syndrome. Same as many of you, I have had knee surgeries, shots, ankle sprains, popping in and out of joints. Every morning I have to pop my knees and ankles 'back into place' before leaving the bed. Too much ibuprofen led me to prescription NSAIDS. I use gels, creams, and Biofreeze on knees on top of drugs. Now my doctor wants me to change to prescription cream. Helps some, but nothing seems to work for taking away the pain. People don't believe you are in pain when you look normal. All I see is that it will get worse. I am 53 years old now, I don't know how much longer I can go on.

Comment from: BC Lady, 55-64 Female (Patient) Published: November 05

As a child-teenager my knees easily dislocated, so I couldn't do contact or field sports, skiing, or gymnastics. Later my shoulders would easily pop too. My skin is very soft and stretchy, cuts bleed easily, and scars do form; eventually a dermatologist diagnosed me with Ehlers Danlos syndrome when I was about 45. I've had major/minor orthopedic surgery on my knees every decade starting in my 20s; both knees have 6 inch scars. I started strength training at 36 and have kept it up all these years (I'm a very fit 60 plus lady now. The gym workouts made a big difference to my quality of life; having strong muscles surrounding the patella and shoulder joints meant I no longer dislocated anything. Stronger, dense bones helped too. However, my gums receded more than population norms and I now have early arthritis. Still continued (Mediterranean) diet and exercise and a disciplined life have left me stronger and healthier. My heart is good, I've remained slim and there are many other health benefits. Advice: had I been diagnosed sooner I would have started strength training earlier and maybe avoided so much surgery.

Comment from: glorea, 35-44 Female (Patient) Published: June 07

I have hypothyroidism and an elevated HbA1c of about 10. I have no symptoms for diabetes.

Comment from: emelou47, 25-34 Female (Caregiver) Published: February 08

My partner was told as a child aged 10 to 15 she had Ehlers-Danlos syndrome and at the moment at the age of 30 she is losing muscle strength in her arms legs and is having severe back pain. So far nothing seems to be easing the pain she is in. I just want to be able to support her in the best possible way.

Comment from: TiaEstrella, 55-64 Female (Patient) Published: March 11

I am 62, diagnosed with Ehlers-Danlos hypermobility about 15 years ago. I believe I inherited the syndrome through my mother"s family, which has a long history of being double-jointed. My children and grandchildren appear to be symptom free. After too many years on Celebrex, Ultram, naproxen and other heavy-duty painkillers, a doctor of naturopathy helped me to wean off the drugs. I experienced more pain relief through non-processed natural foods and nutrition than I ever received from the drugs. Of course, nutrition does not cure EDS. In recent years I have received physical therapy and wear leg braces to minimize dislocations. My service dog enables mobility without the wheelchair. I continue very mild exercises and remain drug-free with careful nutritional discipline.

Symptoms of Rheumatoid Arthritis
Comment from: amcariboo, 35-44 Female (Patient) Published: January 08

I was diagnosed 6 years ago with EDS (Ehlers-Danlos syndrome). I have since 2001 undergone 10 surgeries. One was for my shoulder which separated and also for uterine prolapse. The prolapse happened when I was 25 and I had to get a hysterectomy. I was grateful to have been able to have had two daughters even though they were early due to the fact my body cannot support the weight of a child. My hips now dislocate at will and have had to call 911 once because it did not willingly pop back in. What I have is the looks I get. I am bruised from head to toe and I look like I have been beaten. I have also had to have a heart ablation. I hope that my children do not have this as no one else in my family does. We think my grandmother had it but, we do not know for sure. I wish every day for a new way to cope but, as of now I just take my medications like a good girl and appreciate the days when I can function and do stuff with my daughters.

Comment from: Daisy, 25-34 Female (Patient) Published: October 30

This is my first Bartholin cyst. I've had it for 3 weeks now and have been treating it with witch hazel, tea tree oil and 5 percent iodine. It is no bigger than a small pea but won't seem to pop or go away. I can only guess that it hasn't gotten any bigger or infected because I started treating it immediately. The idea of getting it lanced does not appeal to me but I may not have a choice.

Comment from: lochmessy, 55-64 Female (Patient) Published: June 17

I have type 3 Ehlers-Danlos syndrome (EDS). I was adopted, so not diagnosed until late 40s. I have had about 20 operations, as I was not diagnosed and a lot of surgery went wrong and had to be redone. I live on pain killers, go to a pain doctor constantly. I suffer mostly and not always silently.

Comment from: Just Me, 55-64 Female (Patient) Published: January 06

I was an athlete in high school… then my shoulders started dislocating. The surgeon did not diagnose, he just rotated my shoulder in the socket and pinned it. The result is that at 55, my back is always tweaked. The good news is, as I get older, I am in less pain than when I was younger. I wasn't diagnosed with Ehlers-Danlos until I was 21.

Comment from: Terre, 65-74 Female (Patient) Published: February 24

Many of my family members along with me have hyper mobility and loose skin, especially around eyes. My brother has aortic dissection and I have severe hyper mobility and now labral tears bilateral in hips. No doctors have figured out what we have nor pay attention giving any tests. All previous diagnosis of muscular dystrophy, myasthenia gravis, rheumatoid arthritis, fibromyalgia, etc. are unfounded. I can't understand why Ehlers-Danlos syndrome should be so avoided by doctors for an obvious diagnosis!

Comment from: Amber L., 35-44 Female (Patient) Published: May 09

I was diagnosed only a few years ago after a shoulder injury. I have dealt with painful joints as long as I can remember. My hips are constantly popping in and out of joint with an audible pop. I also have curves in my spine that cause severe back pain. My knees and ankles are always cracking. Even my elbows and ribs pop out of place. I also have the hyper-elastic skin. My doctor has me on Celebrex and tramadol, which were working. As time goes on, my symptoms are increasing at a faster rate than we expected. I can't stand for any length of time and have to switch positions frequently when sitting or lying down because I get stiff and "locked up" very quickly. I'm probably looking at a hip replacement before I'm 50. I'm 37 now. After my shoulder surgery (I was in a motorcycle accident), I spent a total of nine months in physical and aquatic therapy, but it did nothing for the pain. I'm still looking for some kind of treatment other than narcotic pain meds.

Comment from: jamiea, 35-44 Female (Patient) Published: April 19

I am 35 and was just diagnosed with EDS type III. It has taken years of low back and neck pain, chronic headaches, fatigue, and dislocated ankles, dislocated knees, a few knee arthroscopies, and multiple doctor visits to get to this point. I chose a profession that keeps me on my feet more than 14 hours a day and lifting 150 pounds or more sometimes (little did I know it was the worst thing I could do). I went to a rheumatologist and she diagnosed my condition after a 20-minute exam. I am starting physical therapy, massage therapy, and water aerobics. As far as medication, she prescribed naproxen and Flexeril, but the Flexeril makes me so tired. I am just relieved to have a diagnosis that doesn't make me feel like a crazy person anymore. I hope that the treatments I am starting begin to help my pain and fatigue. I have told my mom and grandma to get to a rheumatologist as well, because they have suffered with these things far longer than I have.

Comment from: Dundee, 55-64 Female (Patient) Published: December 27

I have Ehlers-Danlos syndrome the veins in my legs split when out shopping, sitting. It's hard to stop blood flow sometimes, my bowel feels like its dying sometimes. Terrible feeling, my knee and hips jump out of joint, pain is horrific hard to cope sometimes. That's why I keep going to work it helps me by concentrating on other things. I am on fentanyl patches very low dose and Panadol Osteo. I don't cope very well to a lot of pain killers as allergic to most. It even hurts lying down as joints pain so bad at night, have trouble walking as well. My grandchildren have it as well there joints re forever jumping out, same as my sons. I have since developed Sphenoid Fibrous Dysplasia a very rare condition they said it may be part of this. The fibrous growth is in head under the brain. My eye sight is forever changing, my muscles are practically nonexistent, my skin hangs and is very soft.

Symptoms of Rheumatoid Arthritis
Comment from: In pain, 45-54 Female (Patient) Published: December 14

My first surgery to prevent my knees from dislocating was when I was 14 years old. Five surgeries later to deal with different injuries on different joints, I deal with pain every day. People look at me and see a healthy looking person. However, all I can think about is how much pain I am in. If I feel this way at 50 years old how will I make it another 10 years. Pain is a silent killer of souls. I was only diagnosed with Ehlers-Danlos 3 years ago. I know how others feel with this disease. Most doctors have never heard of it. I feel guilty having to take pain medication. Almost like a criminal but without it I would be in bed. Sorry for all who suffer with it.

Comment from: concerned mom, 7-12 Female (Caregiver) Published: November 26

My 8 year old daughter was just diagnosed with Ehlers-Danlos syndrome and we found out the hard way she had her tonsils and adenoids taken out and during the operation she had her neck dislocated and had to wear a halo and a neck brace. Going through all this we also discovered that my youngest daughter has it and was really messed up was after her tonsils were taken out they said my daughter was faking just wanting attention when she really had a dislocated neck.

Comment from: Lou, 13-18 Female (Caregiver) Published: November 16

My daughter was diagnosed last year with EDS, after I had a biopsy (she is needle phobic). Despite hydrotherapy and regular physio she is in pain on a daily basis and pain medication does little to relieve this. She is 17 and learning to drive but has problems with a manual and may need an automatic in order to pass her test. I can only see it getting worse as she gets older.

Comment from: theslope, 45-54 Female (Patient) Published: April 19

I was diagnosed with Ehlers-Danlos syndrome when I was 17. I have arthritis type pain that they have me on Naporsyn for.

Comment from: misdiagnosed?, 45-54 Male (Patient) Published: December 17

I have suspected Ehlers-Danlos syndrome since I recently dislocated my elbow by putting my arm out to stop a slip and fall. At age 50 that was my first bone break or dislocation that did not pop back by itself. I have known since a kid I could touch thumb to forearm, palms to floor, etc. I am a marginalized (by HMO) chronic pain patient of last 15 years because I do have herniated disc with pain in back, but also traumatic injury to tendon attachments in ischial tuberosity region. Doctors don't like to talk about it, so they say they give me extended release morphine for back problem. Saw a rheumatologist and he said (after I showed him my "range of motion" that I had benign hypermobility syndrome, but not EDS hypermobility because I did not have the characteristic EDS skin. I am wondering how often EDS is misdiagnosed as non EDS hypermobility syndrome? How do I get a proper diagnosis? I'd hate to die of an aortic aneurism like grandpa at age 48 because of a missed diagnosis.

Comment from: JoeBrewer, 25-34 Male (Patient) Published: November 14

I was in the US ARMY when I was diagnosed with Ehlers-Danlos syndrome. Since then I was medical boarded out as when I ran often my knees would "pop" while it was what they called a minor subluxation, I called it major pain. I have dealt with it as best I can. I lost any ability to jump. To those suffering, I hope soon doctors learn more about this. You will find many whom want to give you some over the counter medications and truly lack the understanding of the pain you feel. I was on Lortab for some time to help but now have Tramadol which is doing nothing. I know have turned to alcohol as the doctors have failed me.

Symptoms of Rheumatoid Arthritis
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