Coping with pain from Ehlers-Danlos Syndrome

20 what pain feels like ehlers danlos

You might have seen Hallie’s edition of Tell Me a Story. Her journey with pain as a patient with Ehlers-Danlos Syndrome (EDS) is familiar to us now, but several years ago, we had not recognized just how often EDS, a hereditary cause of hypermobility, was a cause of pain.  In fact, I recall reading a journal article in the 1990s that said hypermobility was not a cause of pain.

But it is. We’ve learned a lot since then.   Several years ago we began to notice that patients came to our Pain Clinic with a variety of different pains. We listened as they told their stories and noticed that many of them were hypermobile, or “bendy.” We started to see a connection: pain was associated with EDS way more than we ever knew.  It was starting early with these patients, sometimes before adolescence, and really seemed to pick up once a person goes through the hormonal and physical changes of puberty.

While the specific pain can vary from person to person, we have determined some patterns.  Here are the kinds of pain that someone with EDS might feel:

  1. Pain in the joints. Any of the joints can hurt, and often more than one does.
  2. Pain in the back
  3. Pain in the abdomen
  4. Frequent headaches
  5. Pain with daily tasks. People with EDS can have trouble using pens and pencils, because holding tightly to something so thin becomes painful.
  6. Dislocation of joints. Participating in sports or aggressive activities can sometimes lead to a dislocation injury.
  7. Pain all over. Fibromyalgia and Complex Regional Pain Syndrome, a type of severe localized pain, are common symptoms in patients with EDS.

With all of the above symptoms of pain, how does someone with EDS get relief?  We have found several effective treatments for pain relief, but physical therapy (PT) is the most important intervention. The right kind of PT emphasizes “proprioception,” which is the sense of where one’s joints are in space. Patients with EDS lose some of the sense of where their joints should be, which causes misalignment.  And this is a large factor in their pain. Aquatic therapy can be another great way to go, if PT on land is too hard to start with.

Here are other ways we have found to relieve pain associated with Ehlers-Danlos Syndrome:

  1. Work with a pain psychologist. He or she can provide excellent interventions for chronic pain. The idea is to harness the brain to help control the pain and to figure out ways to have a good life in spite of pain. This is extremely important.
  2. Acupuncture can be helpful for some people.
  3. Meditation and gentler martial arts such as Tai Chi can sometimes combine the strength of the mind and the body to bring some relief.
  4. Yoga is often used as a good mind-body therapy. But be cautious. For people with EDS, speak with the instructor and watch a class or two to see if the positions used are okay for your joints.
  5. Medications can help, but cannot change the joints, only lessen the symptoms.  No medication can take the place of proper PT, OT, and psychological therapies:
    1. A fast acting, short-lasting pain medication can be helpful during a painful dislocation.
    2. A muscle relaxant to help reduce muscle spasm after a dislocation can help get the joint back into position.
    3. Some anti-seizure and antidepressants can help with widespread pain, or nerve-related pain

Many patients with EDS come to us feeling resigned to their pain.  They have had it for so long that they feel like it is something they just have to live with. But the reality is that we have found quite a few methodologies that can offer relief. They may not offer 100% reduction in pain, but these treatment approaches help patients get back to their daily lives and tasks. We’re thankful for our patients who have taught us so much along the way.  In turn, we are happy to help other doctors, therapists, and patients with EDS learn more. Be well.

   Questions? Request more information about our Connective Tissue Clinic, which treats EDS.

Editor’s note:  we hosted a live event in August 2013, in which Drs. Goldschneider and Neilson answered questions from families related to Pain Management for Children with Ehlers-Danlos syndrome.  You can watch the recording on YouTube

Kenneth Goldschneider, MD, FAAP

About the Author: Kenneth Goldschneider, MD, FAAP

Kenneth Goldschneider, MD, FAAP, is director of the Pain Management Center and is a leading expert in treating complex chronic pain conditions in infants, children and young adults.

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Comments

  1. Josh October 26, 00:42
    My girlfriend suffers from EDS and I want to do anything I can to keep her from suffering. Lately her pain has been much worse. Any idea on what to do? Her family is very un-supportive on the issue. She wants to stay away from pain medication as much as possible.
    • Laury September 15, 23:29
      Hi Josh, I also have EDS. Things that typically help me out is stretching, P.T, and working out (:
  2. Nancy November 06, 18:15
    So nice to read some of the letters. I would like to know if there is a GROUP IN TULSAOK. Area???? Please give me info.I am interested in various modes of help availble. I go to the OMM Clinic in Tulsa.Every two weeks I get OSTEO treatments.....with the student Dr. And Osteo Dr.the hands on appt. is about 40 min. Hands on. They are a help to me! Just wish I could go twice weekly.I do MODIFIED WATER AEROBICS.Which is follow thru for water P.T. I only wish I had encorporated this earlier. I also do some modified TAI CHI Once a week I KAYAKwith my husband .He assist me in and out of the kayak. I use feather weight carbon fiber paddle otherwise it would not be possible. My name is Nancy and Iam 66 and getting a late start to surgeries with ORTHO. I have had BUNION SURGURY on both feet with rods and tightening of ligaments. A year later on left foot the screw was coming out...the second surgery did better...tighten those worn out ligaments.Feel the nerve pain and numbness . I take some Neurotin and flexeril and some tynenol pm for pain and sleep.Also low dose ambien. The last surgery on right foot.....so disrupted total body connective tissue! I have to whip replacements as well as 2 knee .Getting such a late start!says Ortho Doctor.I must get stronger! I have done some low level LAZER TREATMENT on lower back.it helped some....anybody know of More POWERFUL LAZER TREATMENTS ? I have done some PROLOTHERAPY when I first FINALLY got Diagnosed 7 years a go.I go to the best ENERGY THERAPIST , N.D. ,AND DR. IN ENERGY MED. SHE has numerous continuing courses and medical intuitive so I don't waste my time wondering which supplement is best match for my body chemistry. WHAT ELSE IS OUT THERE FOR HELP? Iam a former 72 OLYMPIC PARTICIPATE ....which complicated EDS AND and PAIN , AND SEVERE OSTEOARTHRITIS .WHO CAN I TALK TO .....WITH MY above info? THANKS SO MUCH and God Bless you, Nancy
  3. Marta November 10, 21:25
    It's so good to read resent news about EDS. My son is 30 and was diagnosed with EDS it OHSU (Oregon Health Science University) when he was 20. He is in constant pain and lately depressed that his primary care has said he won't do anymore for his pain other than the oxycodon (he has been on the same dose for several years). He has not done any scans or x-rays to see exactly what damage he has to his joints. We know of some stress fx of back caused by sports in high school (before we knew of Dx) rock climbing, etc. because he was so tall and flexible, he was good at those types of things. Any suggestion about a doctor that is knowledgeable and will to go the extra mile for my zebra??. We live in the mid-valley in Oregon.
  4. James Zatowski November 12, 04:27
    Hi My daughter is 2 yrs old now. But we recently had her mother tested for EDS. She tested positive. Well my main concern is I am noticing that the doctors in Virginia are confused in regards to my daughter. Since my daughter was an infant she was bendy and something was off. Also the doctors said she had colic. She would scream excessively at all hours. Eventually when she was 7 months old. We thought she had a seizure. We were wrong but the doctors noticed something was off. After that testing began, we have gone through the gambit. EDS hasn't been brought to the table. Yet the doctors seem confused and want to point to SPD. Now that my daughter is communicating. The word ow is persistent. Weather pressure is a big trigger as well. I understand that the doctors won't test my daughter until later. But how do I help her minimize the pain in the mean time? Concerned father Colonial Heights, Va
    • Kenneth Goldschneider, MD, FAAP
      Kenneth Goldschneider, MD, FAAP Author December 14, 08:33
      Thank you for writing. Pain in children this young needs to be looked at. I cannot say what the “something off” might be. EDS cannot be diagnosed until later, as you know. There would be no reason to bring it to the table in infancy. That is not to say whether or not she will eventually be diagnosed with EDS , since that cannot be said right now. I cannot address why she says “ow” all the time, because like any word a toddler seizes upon, it can be used both appropriately and not, and is subject to input from those around her. If she is otherwise well, growing and developing normally, then simple support measures such as distraction and not asking her about pain seem appropriate. Signs of illness or not growing/developing in the expected manner are indications to have her looked at again, or by another set of professional eyes.
    • stephesk8s June 07, 08:48
      Has your daughter been checked for Chiari Malformation and brainstem compression? They often go hand in hand with EDS due to it causing instability in the upper spine and joint between spine and skull. And can cause pressure headaches and seizure type events.
  5. […] Coping With Pain From Ehlers-Danlos Syndrome (Children’s Blog) […]
  6. Georgia Weaver November 29, 12:50
    Thank you so much for your info and comments. I am 55 was diagnosed with Type 3 recently, my younger son was also diagnosed and we suspect his older (8 years) daughter also has Eds type 3. We live in Iowa, are there any doctors who you recommend. My son and I were diagnosed by Dr Trapane a pediatric genetics the at Iowa City Hospital. Thank you so much.
  7. Caryn Hasbrouck December 04, 17:30
    Does anyone know of specialists in EDS and EDS pain management in the Portland, ME area? So far we have not found anyone. I am asking for a friend who was recently diagnosed, but has not found much help at the local pain clinic.
  8. Shoulder Pain December 09, 03:12
    Great information, you have a wonderful blog and an excellent article.
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  10. Rob December 19, 06:08
    My wife has terrible some nights. She is 32 and has been battling the pain all her life. Unfortunately it has been getting to the point where her entire body feels like it is on fire and the slightest touch is extremely painful. It is frustrating for me to see her in such and not knowing what I can do to ease it. I feel sad on these nights because I want to help her but feel that can't. Because she is so sensitive to touch and extremely restless, is it best for me to leave her be and come to terms that EDS has control of her? Is there thing whatsoever that I can do to help her?
    • Rob December 19, 06:17
      I apologize for leaving out words in my previous comment. I am just typing with emotion because she is in such pain at the moment. She has been trying to sleep for hours but has only been tossing and turning. The current solution is to get out of bed, go downstairs to watch TV and wait it out in the most comfortable possion she can get herself into. Whether it in the chair, on the couch or on the floor.
      • Kenneth Goldschneider, MD, FAAP
        Kenneth Goldschneider, MD, FAAP Author December 21, 09:32
        Dear Rob, Thank you for your email. Being the supporting person for a person with chronic pain is often difficult. Your wife might benefit from seeing a pain specialist who takes a holistic approach to pain. The feeling that something “has control” over a person is a bad feeling, and working with a psychologist towards re-taking control is a critical part of regaining one’s life in the face of EDS or any painful condition.
  11. […] sources […]
  12. […] By:Kenneth Goldschneider […]
  13. Gloria January 11, 08:59
    My daughter is 10 years old has been having stomach pain for one year went to the doctor had all kinds of tests come back negative but she still complaining of stomach pain what can I do to help
    • Kenneth Goldschneider, MD, FAAP
      Kenneth Goldschneider, MD, FAAP Author January 12, 11:27
      Hi Gloria, Thanks for your question. I really cannot say much on this blog site especially without a lot more information about what's going on. We would be happy to help figure it out if that would be useful to you. I'm certain that our gastroenterology colleagues (513-636-7475) could be helpful as a second opinion, and we in the Pain Clinic (513-636-7768) would be happy to see you all, depending on how close you are to us.
  14. Dustin January 23, 22:05
    I'd like to make a revision to your list of pain one with eds might have. Having EDS type 3 and multiple shoulder dislocations. The "participating in sports or aggressive actions" isnt really how it works with someone with EDS 3. Of course there are varying degrees of EDS, but for an example, I can go to sleep fine and wake up with my shoulder or jaw fully dislocated. There are a lot more varying degrees of hyper-mobility than most doctors I've come across will even acknowledge.
    • Rosita June 05, 09:36
      So true Dustin. jaw shoulder 24/7. Nobody understands except those of us who suffer.
  15. sandness peak April 21, 00:15
    20 years of back pain. Stretching every day and light exercise as often as you can. That keeps me moving and relatively pain free.
  16. Kitty June 06, 10:42
    Please help, my 13 year old daughter has a DX of EDS3, she is in constant pain, her crp , ERs and ana are constantly elevated (ana+) there is no visual joint damage on U/S. But her joints are constantly swollen. Meloxicam or other anti- inflammatory meds give no relief, the tramadol and Vicodin don't help. What can we do ? And is blood inflammation normal for Eds ? We need help.
    • Rachel Camper
      Rachel Camper June 08, 08:43
      Hi Kitty, It is difficult to offer specific advice in this format. You might try calling our pain management center to see if they may be able to help your daughter. They can be reached at 513-636-7768. Many thanks for reaching out!
  17. Lori June 23, 20:25
    Hi, my name is Lori (54 yrs old), led a pretty normal life, worked as flight att over 20yrs.All started when I got hurt at work, DE Quarvain's tenosynovitis 2001, ended up with 6 surgeries over 8 yrs ti try fix thumb, wrist, nerves etc also had lumbar fusion from spondylrthesis, know that both are found with EDS patients, trying to make this short lol. Then I really started having big problems, my back, adrenalectomy, fibro,IBS, peripheral neuropathy 11yrs later, they sent me to geneticist and was told EDS problem all along, but no one really doing anything about it!! Why did my body go so many yrs, no problem (minor here and there) for 45 yrs??? I've done PT, OT, Myofascial release, pain clinics (holistic) now can't go to Mall unless in wheelchair?? Neurologist said that one of my anesthesia's could have done it!!?? Don't know what to do? Miss so much!!
    • Julie August 02, 09:57
      To Lori. On June 23 you posted a comment about your life with EDS. I had a similar full life and am now disabled with severe chronic pain.My main pain relief comes from Celecoxib (Celebrex) and daily Norco and Oxycontin. I try to take as little as possible to minimize side effects. I've had no problems with taking too much. Without them I would be bedridden and suicidal and would not live long. I am able to be pretty active for someone with my messed up spine and joints, doing light gardening, housework daily, cooking & volunteer work. Walking or shopping is one of the most painful things, so my partner does most of the shopping. The opiates were a frightening step for me, but they have not been a problem but a solution. Addiction is different from taking them appropriately. Get a good pain clinic that does meds as well as other treatments. For years I went to pain specialists that would only do injections and did not guide me to a proper pain clinic. That was their failure, since I was desperate for help and suffered intensely.At the time, I was working as a Marrage & Family Therapist and thought I would work for a long time. Nowadays, my nurse practitioner at the clinic is SMART and compassionate. She handles all my referrals for anything that can improve my ability to deal with the pain. Including but not limited to referrals for sleep studies that got me a c-pap machine. Also referrals for joint assessment and surgery. Now, I can sleep most nights! A big change. I've had five spine surgeries and will have more. Also need my feet and second knee joints fixed. I've had to give up a lot but I've stubbornly kept my life full of reasons to keep moving. I cannot stress this enough! Psychological balance is so important in coping with disability. It was hard to give up my superwoman cape but life is still good most of the time. I run a cat sanctuary (with others) that helps me feel needed and allows me to dissociate from some of the pain. Keep pushing for a treatment routine that works for you. Although addiction fears sell news articals, they don't generally apply to those whose life is severely affected by pain. The articles rarely mention how the opiates affect pain patients differently. For more on that go to creakyjoints.org. Blessings to you as you make a new life for yourself, even as you grieve what you have lost.