Picture
Dr. Pocinki began his talk giving a quick overview of the autonomic nervous system and autonomic dysfunction.  After a poor nights sleep, many bodies respond by producing extra adrenaline to keep them going (as a side note, this is why clonidine works for ANS dysfunction--it suppresses adrenaline.)  The ANS regulates all body processes that occur automatically including sleep.  The ANS is classically divided into two subsystems: the parasympathetic nervous system (PNS--"rest and digest") and sympathetic nervous system (SNS--"fight or flight").  

Dr. Pocinki began his theory of autonomic dysfunction in EDS.  There is the concept of an adrenaline reserve.  The reserve is the capacity of an individual to deal with stress, and it is not unlimited.  The central paradox for those with hypermobile EDS and ANS dysfunction is that the lower the EDSers reserves are, the more exaggerated the stress response is.  He used the metaphor of a car.  A person with ANS dysfunction is constantly hitting the breaks and gas attempting to get his/her body where it need to be.  Instead, this person is getting surges of too much gas/slam on breaks/too much gas/slam on breaks/too much gas....and on it goes.  Thus, a person with ANS dysfunction wastes tons of energy regulating body processes that should be automatic.

A sympathetic surge is marked by palpitations, shortness of breath, and a flushed face.  Here, the gut relaxes.  Conversely, in a parasypathetic surge, an individual will show signs of nausea and chills.  Sustained SNS stress leads to pain, fatigue,and dehydration.  This sustained stress also leads to depletion from the stressor-over-response cycle.  The depletion phase is marked by trouble with concentration, a tendency to avoid tasks, trouble with details, and the like.  Further depletion leads to sympathetic activity sufficient to mask pain.  That is, the individual's resources are so depleted that an contradictory response happens--the individual will feel good, and have a lot of energy.  He/she will also most likely have trouble sleeping at this phase.  Finally, in the sustained parasympathetic response phase, i.e. the "tired but wired" phase, an individual will experience nausea, abdominal discomfort, malaise, fatigue, and lightheadedness.  These symptoms will be constant.

Dr. Pocinki next posed the question:  why do EDSers look like they have (and are diagnosed as having) psychological disorders?  He reviewed the symptoms (under the DSM) of common psychological disorders, including panic attacks, panic disorder, ADHD, and hypomania (bipolar disorder).  The descriptions of all of these in the DSM can describe much of the ANS dysfunction above as well.  

Finally, Dr. Pocinki spoke about the treatment of ANS dysfunction, which means the treating physician must address the underlying problems.  Sleep is a patient's only chance to, metaphorically, put gas in his or her tank.  If the patient does not get his or her pain under control, the patient will never get decent sleep.  The energy used during the day (that must be replaced by sleep) consists of pain, fatigue, dehydration, cognitive effort, emotional stress, and other (work, school, etc.)

Leicia Raygan, PhD.
3/28/2014 03:46:32 am

Dr. Pocinki,
I'm a licensed clinical psychologist with EDS III who sees a specialist Rheumatologist (and other physicians.) In the last two years, he's put me in a clinical trial which has helped me not have severe flares, anymore. In face, I really haven't had a flare in two years. The clinical trial medications are :250 mg. of Famciclovir (tid;) and 15 mg. Mobic, once a day. I did not think that this would help me, as I've tried many medications to get past the flares.
Anyway, I wanted to tell you, so it might help someone else. Also, do you know why it works? I'm just curious. Thank you.

Leicia Raygan, PhD.

Reply
Kim Robinson
10/26/2014 01:02:42 am

Dr. Pocinki-
I am a 47-year old RN who is very misunderstood by every Dr. I've seen. I feel like my dog is the only person who is essentially "getting it." I've had 7 joint tears in 8 years. Many surgeries, and am working from home PT and on PT disability. My daughter is more hypermobile than I, but because she is young, she can deal with issues better. We have not been formally diagnosed, but see a geneticist at UNC CH in Jan. I need medication before my life is totally destroyed. No one around me knows how to treat EDS. I live near Charlotte, NC. The geneticist can dx me (by sx's and emails, he says I probably do have it), but he cannot manage me.

Dr. Raygan, PhD---I will look this up and mention it to my PCP, but I cant even get his partner to see me and he has other patients with EDS. I am an honor student in Grad school for nursing, and these people think I'm totally stupid. I took Mobic and received much help but I got an ulcer in 2011, so I can take some NSAIDS but not for long. My Rheum won't even repeat blood work b/c it was negative six months after it was positive. ? So, he wants to wait a whole year. Meanwhile, my life is slowly being destroyed. The labs were + for Anti-La, Sm-RNP, and a couple of other things. It was an ANA Elisa. The second Elisa was neg (my ortho thinks) because I had had a surgery 7 days before and received Abx and steroids. I have not mentioned the EDS issues to him, which my PT brought up and talks about at each session of PT. The PT has other EDS patients.

Psychologically, this back and forth of energy you are talking about is killing me.

Any thoughts? Any ideas? Is the clinical trial still going? I crave some connection because I know my body is very different.

Thank you for the hope Dr. Raygan.

Reply
todd
11/11/2016 12:00:08 pm

joint hyper mobility and tendon tears in EDS are due to poor connective tissue matrix...prolotherapy with either dextrose or prp are the only available solutions to treat MSK related pain

Tina Lanier
2/8/2017 07:59:44 pm

Hey! Have you read any of dr Daniel Dantini's protocols? My bloodwork shows that I have "chronic mononucleosis " and my titters skyrocket when I'm flared. He prescribes the same combo along with apt of supplements. Great Doc!

Reply
Jennifer
8/20/2014 06:35:53 am

so you are not taking any more patients and the genetic doctor diagnosed me (and my daughter last year) but she can not treat anything or do anything. my psychiatrist knows nothing.

My daughter is dead and this is serious to me. She may have been more able to cope if she had healing sleep.

My daughter is dead. She took her life. She was18.

www.firstgiving.com/fundraiser/lynettebowhay/lynette.

Reply
Sue
11/3/2014 02:07:36 am

I am so so sorry Jennifer. I wish there was some way to soothe your loss, but I know there is not.

My daughter is 22 with EDS hypermobility type. She has been in hospital for two months now since she took a huge overdose. Luckily she survived this time, but unless her pain can be controlled I believe she will try again.

Reply
Jennifer
8/21/2015 12:14:52 pm

Help her sleep. Not getting REM sleep makes you crazy.
Keep her safe. Quit your job or whatever it takes- nobody should ever live with the pain I have.
I didn't understand her pain and I never knew this pain- it should kill

carlene brown
4/30/2015 04:16:19 am

I suffer with severe pain every day of my life and I understand not feeling any quality of life. Shame on doctors for not taking us serious at all. I am sorry about your child she deserved better help. No one should suffer every day of their life.

Reply
7/11/2015 11:32:27 pm

After being diagnosed my psychiatrist for ADHD finally believed my sleep disorder
She prescribed 30 MG Temazepam and 1 MG xanax
I have to take 50 MG VYVANSE 30 MINUTES before I can get up.
Initially I could sleep 12 hours (heaven for someone who NEVER could sleep before) but I am building a resistance and it went to 10, 8, 6.
Now it gives me 3-4 hours

Reply
Rose
11/14/2015 10:07:49 am

Words fail to convey the deep sorrow and compassion I have for you.I am so sorry about your daughter. Myself, children and grandchild have this. Rarely sleep for more than 2 hours. EDS

Reply
JT
8/22/2014 11:04:02 am

Jennifer, so sorry for your loss. I have EDS and I often think about suicide. Today in particular was very bad. My thoughts and prayers are with you.

Reply
12/9/2014 04:25:48 pm

Finally, in the sustained parasympathetic response phase, i.e. the "tired but wired" phase, an individual will experience nausea, abdominal discomfort, malaise, fatigue, and lightheadedness. These symptoms will be constant.

Reply
Chris
1/28/2015 03:57:14 pm

I read Dr. Pocinki's explanation about the sympathetic and para-sympathetic nervous system. The para-sympathetic fits my daughter to a "T" . She is 21 and I am visiting her at college because she has been so ill lately. She most likely has EDS (waiting for official diagnosis) and is experiencing all of those symptoms and this is her first year with increasing pain. Does Dr. Pocinki explain anywhere about how to get the para-sympathetic system under control ? She also has POTS (postural orthostatic tachycardia syndrome) and is on many medications to treat those symptoms.

Reply
Fellow maybe-zebra
2/8/2017 08:26:39 am

Hi pops- for your daughters sake, I wanted to mention all my symptoms really kicked in when I moved to a new place too- it turns out I grew up on non-fluoridated water and where I moved was heavily treated. I learned from my EDS readings that the same reason certain antibiotics are a no- Cipro, Levaquin, Fluoroquinolones- is the fluoride in them- apparently fluoride will degenerate collagen?
So while waiting for Dx, I drank only fluoride free water, and take magnesium in a drink form at night to help my muscles rest, and my guts relax.
I read an article about taking vits b and d to help with the adrenaline issues.
I know this won't fix your daughter but its eased my discomfort a little.

Reply
2/20/2015 05:19:38 pm

Thus, a person with ANS dysfunction wastes tons of energy regulating body processes that should be automatic.

Reply
Annie
4/16/2017 03:26:36 pm

Was sub-clinical hypothyroid all my life.

Reply
Dr.Kenneth Davies
2/20/2015 07:37:44 pm

I am a consultant in clinical and cardiovascular physiology, clinical phytotherapy, expert in diagnosis of chronc fatigue syndromes (ME)and EDS. I have read Dr.Poniki theory in respect to ANS related to EDS which applies to most long term chronic pathologies not just EDS, EDS sufferers have psychological with psychiatric poor mental health, much is caused by not having correct diagnosis, specialist care and correct pain mangement etc. The problem is two fold (1) physcians do not know how to join up the dots of the pathophysiological array of symptoms because they don't understand that EDS is one of some 80 inherited immune pathologies of which EDS presents as a combination of connective tissue disorders affecting many organs randomly, thus no two patients are exactly the same. EDS can present without obvious hypermobility bu with deformation of bones, which the various joint problems are one example. (2) EDS sufferers self diagnosis a bit like bouncing balls picking up snippets of information with self changing view of I have got that or not. EDS requires a TEAM approach of competent diagnosticians, specialist to deal with specific subtypes for example EDS cardiovascular, clinical psychologist/psyhiatrist and importantly properly trained complimentary alternative medicine (phytotherapist) practitioners. EDS sufferers need to recognise they cannot pick and choose which members of the team if available they are examined by, its all or none to achieve the best result of managing each EDS sufferers condition as it presents itself.

Reply
2/21/2015 03:39:29 pm

Do you have any advice on how to acquire a team approach? I have not had much luck with my doctors communicating with each other in the past. This is where I believe you see some of the need to find a doctor that fits. Not all doctors are up to speed on EDS leaving patients suffering and something feeling hopeless when they want to believe in the medical community. There is some degree of managing your specialists involves that is necessary with the current lack of recognition in the medical community of the systemic aspect of EDS and itself management.

Reply
5/1/2015 04:00:48 am

Dr. Davies,
How do we go about putting together or finding a collaborative team to treat our whole body? You are ABSOLUTELY a correct that this is what we need as every one of our systems depends on every other system working correctly. This is a huge challenge for all of us.

I run the EDS support group for the DFWZEBRAS Metroplex and we are trying our best to get our zebras care, but feel we are up against insurmountable odds!

Reply
Alfred William McNicoll
5/2/2016 07:37:58 am

What is the DFWZEBRAS Metroplex. We need help bad!!Dr. McNicoll

robin cooper
5/21/2015 08:37:43 am

Most of us with eds fully understand the need for complete comprehensive care. Our problem is that finding it is worse than looking for a needle in a haystack. Finding one doctor that takes you seriously and has any understanding of what EDS is, is a miracle .Finding a team that you can afford to see, get an appointment with in a reasonable amount of time ( while managing chronic illness & attempting to not sink into depression and want to give up) is pretty unlikely. We have no choice but to research and self diagnosis because bringing that information to a doctor is the only way that we're going to find answers. I'm 34 years old was misdiagnosed for 20 years. I told atleast 4 or 5 doctors that i believe that i have eds, i was flat out told that I did not. After not having insurance from not being able to work and not knowing why ..Then having severe complications during pregnancy, I was finally able to get an appointment with Geneticist. I was told I absolutely have the classic form of eds , that I'm a text book case and there's nothing they can do to help me. no advice for treatment or where to go to find it and to touch base with them in five or so years maybe there will have been some research by then. So how do you suggest we continue seeking quality of life when we struggle to feel validated that our illness even exists.

Reply
Lori Anne
9/19/2016 03:47:19 pm

No kidding, no one even wants to acknowledge that I have EDS. No wonder I have chronic migraines and am on psychiatric meds. The doctors I see at the Veterans Administration do not even want to acknowledge EDS or relate it to my chronic hip pain, migraines and lack of sleep. They want to prescribe pain medications and psychiatric medications....

Jennifer
10/10/2016 05:28:15 pm

I spent 28 years bouncing from doctor to doctor before researching my condition myself and finding EDS. I am still trying to get in to see specialist in EDS for confirmation and treatment. It's scandalous that I spent much of that time being told I have a somatic disorder, a functional disorder (same thing), and spent too much attention on my health all while degenerating. We know we need specialized care. Finding it is very difficult. And I have, along the way, had to see multiple specialists many times and have tests repeated many times. I spent over $12K in health last year. It's ridiculous. The medical system is failing us.

Heather
2/7/2017 11:56:29 pm

Very well and accurately written Robin.

Anonymous MD
8/18/2015 11:47:06 pm

Dr. Davis,
How arrogant on point 2 of your post! Yes we self diagnose because nobody will do it for us. Now with the Internet our information is better than what you provide in a 10-15 minute office visit. I would kindly remind you Multiple Sclerosis was once thought to be a pshyciatric illness, until the introduction of MRIs. Gastric ulcers were attributed to "stress" until they discovered and believed the H. pylori theory.
You also imply "Axis II" diagnoses, along with the deragatory stigmas attached. I wonder how you woud feel and react if you were collapsed in bed and you heard your young child crying because you were too tired and unable to sing a bedtime lullaby. That child is much smarter than you, "Doctor".

Reply
Jennifer
10/10/2016 05:31:53 pm

I would also like to point out that while some patients do have co-morbid psychiatric diagnoses, some do not. I am a happy go lucky person, still working full-time, managing pain to the best of my ability, sleeping to the best of my ability, and making time for hobbies and loved ones. I have had doctors try to convince me I must be depressed. I'm not. I also am not hyperventilating when I have shortness of breath - its tachycardia. The negative assumptions I have been peppered with over the years harken back to the ages when women were said to have hysteria that could be medically relieved with medical orgasms. It's time for increased awareness of EDS and its co-morbidities and to stop blaming patients for being sick.

Annie
4/16/2017 12:09:57 pm

Jennifer... Bravo and spot on. Hysteria. Go watch the movie. Ugh. Makes me want to puke.

I'm the happy go lucky, hypermobile one, but my sister, with fewer signs of EDS-Honor has multiple personality issues. Rage, bipolar, narcissism. Depression. It sucks.

As to team... yeah, wow. The best any of us can hope for at this point is to:

1) Go to teaching hospitals. See best specialists there. They can see each others notes.
2) Never stop learning about yourself.
3) Mom was right. Take your vitamins and eat right.
4) If you can, swim. Every day. Like your life depends on it. Because it does.
5) Never take cortisone injections. Ever.

Finally getting it right after almost 60 years

Eileen
11/10/2015 06:55:21 am

Team approach? that would be nice but my daughter's dr's don't/ won't work that way....Unless one has diabetes or cancer. This team approach does not exist for EDS patients. We have been looking for a competent team approach since 2010. So where can we find this team approach for EDS patients?

Reply
Echo
12/22/2015 01:29:05 am

Yet many of its with EDS can not even get even one doctor to treat ite even refer us to any specialist that know about this, nor willing to learn enough to treat us themselves.

I was born with MRKH and EDS. I've dealt with poor health care my whole life. Here take 3 Norco 3 times daily. (Tuatara not what I consider a good treatment or wellness plan) And what about all the other symptoms mentioned above ANS sand PNS

What type of doctor do I request that can help treat these???

Reply
Edsmum
12/23/2015 04:25:49 am

Dear echo,
I just had to reply, as my daughter also has both mrkh syndrome and eds (hypermobility type). So far I have been told that it is just coincidence to have both, but I have wondered if there is any link. My daughter generally prefers not to follow the discussions and research, so I keep an eye out in case I see anything that may help her. Any how, merry Christmas and best of luck to you x

Hannah
3/15/2016 05:25:18 pm

I have MRKH and other conditions including a dysfunctional autonomic system. Haven't found anyone else with both until now!

Annie
4/16/2017 03:00:15 pm

Neurologist is the specialist you need, Echo. Hope you have that information by now.

tender girl
4/1/2016 02:03:47 am

Geneticists who see a lot of EDSers tell me they see how much we struggle, we can hardly think. The brain fog of EDS is really terrible.

Reply
4/19/2015 03:59:41 pm

My heart goes out to all of you suffering. Please keep the faith and give your doctors a chance and the information to catch up with you. Meanwhile, I encourage everyone to also look into the effects of both histadelia and histapenia on mood and energy. That is, high histamine levels and low histamine levels. This may also be partially driven by methylation levels, and exacerbated (hyperadreneria) by commonly comorbid Mast Cell Activation Disorders, which particularly mess with our hypothalamus, which are lined with (histaminergic) Mast Cells. Many do better with a sedating anti-histamine at night, along with a low (for them) histamine diet. (Diet will vary for everyone, depends on your triggers, but all should avoid leftovers.) I'm beginning to believe a lot of bipolar disorder in the EDS community is really more likely MCAD and/or histadelia and methylation issues. Further, eating a low-trigger (for you, everyone's will be different) diet will help you sleep better (lower histamine, thus adrenaline) and reduce the circa 3 a.m. waking many experience along with choking on mucus and hot flashes. I've also found acupuncture and Reiki to help a good bit. To your health: http://ohtwist.com

Reply
Yunita.Yuniss
4/30/2015 11:51:34 am

Hello Ami k. hello from Ecuador salute you, i am using Google translator for not write in Spanish, i hope not bother you. I have Ehlers-Danlos type 3 and vi a post with something you published on your blog , i am very interested in getting conferences Ehlers Danlos , especially the issue pisocologicals and psychiatric as most doctors call us crazy , it is why i became interested in review this article on your blog. Dr. Alan G. Pocinki "Pseudo - Psychiatric Symptoms in Ehlers - Danlos Syndrome" if this is a lecture i would like to access it , maybe i can help with that please?
If you want could you answer in english.

Reply
7/12/2015 09:56:09 am

Hola Yunita, no sé si alguien respondió a su pregunta pero el Dr. Jaime F. Bravo, el Profesor de la Facultad de Medicina, Universidad de Chile, Santiago de Chile y del Departamento de Reumatología, Hospital San Juan de Dios, Santiago de Chile es el principal experto de América Latina en el SED. Su sitio web: http://www.reumatologia-dr-bravo.cl/.

También se recomiendo que mire en la siguiente literatura médica para obtener más información sobre la psiquiatría y la SED.


1: Terry RH, Palmer ST, Rimes KA, Clark CJ, Simmonds JV, Horwood JP. Living with
joint hypermobility syndrome: patient experiences of diagnosis, referral and
self-care. Fam Pract. 2015 Jun;32(3):354-8. doi: 10.1093/fampra/cmv026. Epub 2015
Apr 24. PubMed PMID: 25911504; PubMed Central PMCID: PMC4445137.


2: Berglund B, Pettersson C, Pigg M, Kristiansson P. Self-reported quality of
life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a
questionnaire study. BMC Musculoskelet Disord. 2015 Apr 15;16(1):89. [Epub ahead
of print] PubMed PMID: 25880527; PubMed Central PMCID: PMC4403907.


3: Baeza-Velasco C, Pailhez G, Bulbena A, Baghdadli A. Joint hypermobility and
the heritable disorders of connective tissue: clinical and empirical evidence of
links with psychiatry. Gen Hosp Psychiatry. 2015 Jan-Feb;37(1):24-30. doi:
10.1016/j.genhosppsych.2014.10.002. Epub 2014 Oct 16. PubMed PMID: 25459977.


4: Pasquini M, Celletti C, Berardelli I, Roselli V, Mastroeni S, Castori M,
Biondi M, Camerota F. Unexpected association between joint hypermobility
syndrome/Ehlers-Danlos syndrome hypermobility type and obsessive-compulsive
personality disorder. Rheumatol Int. 2014 May;34(5):631-6. doi:
10.1007/s00296-013-2901-2. Epub 2013 Nov 23. PubMed PMID: 24272065.


5: Walter SM. Case Report: Ehlers-Danlos Syndrome in an adolescent presenting
with Chronic Daily Headache. Surg Neurol Int. 2014 Nov 13;5(Suppl 13):S475-8.
doi: 10.4103/2152-7806.144629. eCollection 2014. PubMed PMID: 25506506; PubMed
Central PMCID: PMC4253035.


6: Takei A, Mera K, Sato Y, Haraoka Y. High-functioning autistic disorder with
Ehlers-Danlos syndrome. Psychiatry Clin Neurosci. 2011 Oct;65(6):605-6. doi:
10.1111/j.1440-1819.2011.02262.x. PubMed PMID: 22003996.


7: Eccles J, Harrison N, Critchley H. Joint hypermobility syndrome. Psychiatric
manifestations. BMJ. 2011 Feb 15;342:d998. doi: 10.1136/bmj.d998. PubMed PMID:
21325002.


8: Berglund B, Anne-Cathrine M, Randers I. Dignity not fully upheld when seeking
health care: experiences expressed by individuals suffering from Ehlers-Danlos
syndrome. Disabil Rehabil. 2010;32(1):1-7. doi: 10.3109/09638280903178407. PubMed
PMID: 19925271.


9: Lumley MA, Jordan M, Rubenstein R, Tsipouras P, Evans MI. Psychosocial
functioning in the Ehlers-Danlos syndrome. Am J Med Genet. 1994 Nov
1;53(2):149-52. PubMed PMID: 7856639.

Reply
Jennifer
5/3/2016 07:08:27 pm

A cosmetic dentist recommended stem-cell replacement ($30,000.00)

I've passed middle-age and I'm not having fun yet- but for an 18-year-old(?) There is no price for hope... right?

Has anyone looked into this?

If this can cure EDS, insurance should cover it.

Veronica
5/31/2015 01:23:40 am

I have EDS type 2 and onh/sod, which affects the CNS/mid line structures in the brain. I have tried to give my doctors medical journal articles on my conditions and they won't even read it. I have pseudo mental illness symptoms in a post seizure state that exacerbates the problem. I am left with self care because doctors are not educated and seem to refuse to accept that the don't know everything as well as subscribing to the "think horses not zebras" mentality

Reply
Annie
4/16/2017 03:02:13 pm

Post seizure state?

Reply
Cindy
6/20/2015 03:51:26 am

Dr.Kenneth Davis
It sounds to me that you are doing a bit of patient blaming. Most of us are bouncing balls of bits of information and pick and choose med professionals to see because we
1 have been told it is all in our head so we go looking on our own FOE ANSWERS
2 told it is something minor .... When WE know it is SERIOUS
3 have seen the type of specialist you are sending us to AND HAVE ALREADY TAKEN ALL THE TESTS that branch of medicine will order
and have probably GIVEN your (the attending doctor's)office the report
4. Our funds ARE limited
Until you are a patient with a long term undiagnosed illness
STOP BLAMING THE PATIENT BECAUSE YOU THINK THEY
THEY SHOULD .... Be nicer ... Have more respect... Trust the medical Degree Hanging on the wall ... Realize YOU know best... Should go home and stop wasting your time ?????
WRONG a frustrated patient is usually an exhausted desperate person seeking a medical detective who will not let the rarity of the symptoms STUMP you
Or cause YOU to turn a deaf ear on someone praying
THAT YOUR diploma MEANS more than decoration.....




Reply
Sheryl Fenton
7/3/2015 01:36:28 pm

Dr. Kenneth Davies, are you a UK doctor? I live near Cleveland, Ohio USA. Cleveland is a medical town. What you describe doesn't exist here. The closest thing I've found to a Team-Approach was the MARFAN and OTHER CONNECTIVE TISSUE DISORDERS CLINIC at University Hospitals. It is comprised of Genetics & Cardiology. Your list of specialties sounds woefully incomplete. What about Gastroenterology, Allergy & Immunology, Physical Therapy, Ophthamology, Dermatology, Orthopaedics, Rheumatology, Endocrinology, Neurology...and more. We don't "pick and choose," we seek out medical treatment that is appropriate for co-morbidities and complications of EDS.

Reply
8/6/2015 12:06:14 am

I am 70 now. At 66 I finally had a diagnoises of EDSH. Everything I read says to educate your doctors. I find that to be an impossibility. They do not want to listen and will never take the time to read what I can give them. They are so convinced that 1st it is so rare and I just don't have it or they only know the joint part of it. I have had dislocations since age 10, migraines, surgery in my 20's to remake my knees, a knee replacement (that has only made me worse), Major pelvic floor prolaspe and premature babies and the list goes on. How do you find a team of doctors when I can't even find one that really knows what it is. I know now that my mother suffered all of her life with it, and believe that my brothers (one older and one younger), are both dead. I reallyy have none in my family left.
One of my son's has been diagnoised, but I know the other son has it and 2 of his children, but his wife is a doctor and doesn't believe me at all. SHe just finished her Residency in Baltimore as an ER doctor. She is only going to turn people away as crazy's in there for pain. SO if you can't even talk to people in your own family, how am I suppose to find doctors. She won't even talk to me about it anymore. When I gave her sometime to read about Dr. Neilson, her responce was she thought they were talking about something else.
I'm not even sure I have the hypermobility type. I have not had genetic testing. I learned I have this after I was already on Medicare and they don't pay for genetic testing. I feel so helpless, not for myself, but for my grandkids. Is there any study that I can get in that could get me genetic testing?
Part of the problem is I was always in pain, tired, and all the other syptoms, but I literallty forced myself to do everything, I was told " some people think they have things thay don't have." I doctor hopped and stopped going to the doctor at all. I thought I was a lazy and that was why I felt so bad all the time. I popped NSAIDs, tums, amodiam, etc. Like candy to go on. When I had heart valves replace, I was told I had to have had Rhyematic fever to have had heart valves in that condition. Sorry about my spelling, I just can't spell. The story goes on and on.

Gail

Reply
jenn
11/15/2015 06:19:02 pm

Rarely diagnosed. We all got it from a carrying parent.

Many drugs have reverse actions.

My dog is getting better treatment than us humans- maybe we should wag our tails more.(?)

It is (not) a Wonderful Life

Gloria
3/19/2016 11:58:38 pm

I am 65. A woman on the bus at Disney Orlando noticed how the scar on my face and the back of my neck had healed in a separated way. She asked me if I have Ehlers Danlos syndrome. I had never heard of it. She and her daughter have it. I was having serious problems with the heat at the parks. I get rigors and go limp. It isn't supposed to be 85 degrees in December in Orlando. I looked it up when I returned home and felt certain enough to go to my PCP with a summary of my lifelong and my families' strange medical histories. He referred me to a rheumatologist who refused to see me. At least my PCP actually listened and believed me. I have an 18 year old grandson who wasn't diagnosed with diabetes until age 15 and Graves disease a couple of months ago. He has been in ICU three times this past year. Chiari malformation? I have a syringomyelia. You would think they would look for that. My PCP is looking for an EDS specialist for me in Madison, Milwaukee, or Chicago. The rest of my health history sounds similar to yours with some other GI problems. I also managed to work as an RN to support my children and myself. We usually had no health insurance. ER doctors can be really mean, sometimes. Good luck to you and to your family.

Lana
12/13/2016 04:23:25 pm

Gail, given that your daughter-in-law is doing her residency in Baltimore, you should try to have her look into the research of Dr. Clair Francomano, or Dr. Howard P. Levy, also from Baltimore, who both treat EDS patients out of Johns Hopkins University Medical Hospital's Genetics Clinic. Dr. Levy is the one I saw for diagnosis (and I'm in Canada). Johns Hopkins is one of two genetics clinics in the US that I'm aware of who actually diagnose and treat EDS patients (the other is University of Washington State). I hope, for the sake and medical wellbeing of your grandchildren, if not for your son, that your Daughter-in-law opens up her closed mind and understands that this is real.

Brenda Boykin
10/17/2016 02:24:42 am

Hi Sheryl,
My daughter was diagnosed in 2015 in Kent, Ohio. She and I are having a hard time with this and cannot fine help. The Dr. who diagnosed her doesn't want to see her but once a year. I cannot find any help! She is 20 years old! WE need help now! Thanks

Reply
Annie
4/16/2017 03:24:33 pm

Hi Brenda!

You need to start athe your PCP, and also work with specialists as needed. Your whole body is connective tissue. All systems are affected. I'm almost 60, just had cataracts done. Didn't want to wait until later, when I won't heal so well.

I had my first migraine two weeks ago. Woo-hoo! I was already being worked up b6 a neurologist. Are you seeing the picture I am painting yet?

It is scary. You're not alone.

Annie

Jennifer
8/21/2015 11:45:46 am

I did attend a support meeting & was referred to a Cedar-Sinai doctor.
He does not take insurance and had never heard of Dr. Polincki.
Then he looked on his desk & saw Dr. P. Power-Point on his desk
He spent over two hours with me
The sleep prescription works but waking up is hard
Can I go to Oregon for this ?
I don't have energy for life & work

Reply
Jennifer
11/15/2015 06:13:11 pm

My daughter died alone in a hotel room. The longer I live with this, as my joint pain increases, knowing things will only get worse, and without medical help, I am so sad for her. I miss her with pain beyond imagining, but I understand.

Lynette went through so much- and went bravely, but after realizing that this prevents a person of living a normal life- she trusted God had a better place for her.

I hope and pray that California's new laws will empower "us" to have the right to physical-assisted suicide.

Living in pain and exhaustion- being accused of being a drug addict and/or hypochondriac.

While our condition makes us resistant to many drugs- it has also sharpened our ability to survive.

Most of "us" zebras are highly intelligent, articulate, and creative.

My diagnosis "connected-all-the-dots" and, after losing my beautiful, brilliant, best friend and baby, I pray God frees me from the body that has become a prison.

Reply
Kat
2/21/2016 09:04:35 am

I'm sorry for your loss Jennifer. I am 30 and here in Canada they just passed the bill for physician assisted dying but there are road blocks for the next 6 months. Even then when I spoke with a representative from Dying with Dignity and told them of my conditions and EDS, they told me I technicially qualify but getting the approval would be impossible because of my age. I am truly heart broken especially as overdoses have not worked in the past and I don't wish for a violent but more sure death. The likelihood is that doing it myself would end me in a more disabled way and make me even more depressed.

Anonymous MD
11/15/2015 04:25:51 am

Reply
Anonymous MD
11/16/2015 03:43:31 am

Jennifer,
You are not alone. You are faced with an incredibly difficult burden, regardless of your diagnosis. May your faith keep you strong. If you would like additional backup the National Suicide Prevention Hotline is 1-800-273-8255.
If you have not done so already please consult an EDS support group or "DysautonomiaInternational" website for additional support. There is a new book available on Amazon called "The Dysautonomia Project" by Kelly Freeman, David Goldstein, and Charles Thompson. While this may not address your underlying medical issues, it may help.
Medicine is changing rapidly. Knowledge travels instantaneously through the internet but takes much longer to reach doctors. More and more we will hear about patients making their own breakthroughs in their medical conditions by intelligently searching the web.
Have you ever watched the movie, "Lorenzo's Oil"? If not, watching it may bring you some psychological relief that someone out there somewhere, if not yourself, is working on your very problem, and may have the capacity and capability to solve it.
God Bless.

Reply
tender girl
4/1/2016 01:59:12 am

I was misdiagnosed as depressed and put on antidepressants at age 18. This was before the black box warning. I developed vidid thoughts of suicide and asked for help and spent time in a mental hospital where they bombed me on desyrel until I slept.

I tried returning to college but the EDS exhaustion was too much. My psychiatrist at school put me on lithium (he said I was cycling from the desyrel) and I couldn't attended classes anymore after that drug. Long story, but this ruined my life. I was at a prestigious university. I needed disabled services but I didn't have my diagnosis. My dorm was the furthest from campus. I could hardly carry my books. I'd fall on the long walk. It was too cold for me.

It was deeply humiliating. It made me feel hopeless and damaged as a person. If only I'd never let them talk me into their drugs with the stupid, "Hey you have a chemical imbalance," nonsense. It's only a theory and no one gave me a physical even.

My problem was EDS.

Reply
Scotty Dean
4/4/2016 09:28:41 pm

Hello Folks: As a WASP male at the age of 54, I discovered I had EDS by sitting next to a pediatrician friend of mine, and commenting on her skin texture. She said she has EDS, and so her body does this and this and this and this. To which I said "so, mine does too..." joint hypermobility and skin elasticity being classic. I went home and started reading about my life-long list of oddities and symptoms and EDS = check, check, check, check, etc. Including TMJ with jaw dislocations, three inguinal hernia repairs between the ages of 14 and 40, a knee reconstructed (twice), Irritable Bowel Syndrome, chronic depression, migraines, and spinal pain - oh boy spinal pain. I then had a chat with my Mom (father deceased) to see if she perhaps had symptoms, or was it Dad? It was Mom, though her's manifests as vascular.

Basically, I looked up every ailment she has or has had via multiple internet searches, for example "low palate counts and EDS" - hits on every one.

She was going in to see a specialist about the calcium deposit nodules she has developed on her forearms - I looked it up, yep, and so told her to be sure to mention your EDS!!! She did, he said nope, that cannot be related, so over a dinner visit, I pulled up the research article I had found regarding inefficient processing of blood calcium in EDS vascular leading to classic calcium nodules on forearms or shins - I had her read the pertinent paragraph.

I am trying to hard to get her to understand that she now knows more about this condition and her situation than the majority of physicians, but she is old school. Still trying to get her to Google any malady she is going in to see a doctor about, and include EDS in the search = amazing hits.

Now, if I could just find a physician in Tucson, Arizona who understands that some chronic pain is never ever going to go away. Unfortunately, my PCP's entire group has decided to stop prescribing opiates.

Some doctors DO KNOW - THERE IS SOME HOPE! I am casual friends with an Internest, and I was mentioning having discovered that my group of symptoms were related to...... and he piped up and said "sounds like Ehlers Danlos to me" - now I wish we WEREN'T FRIENDS so HE could be my physician!!!! I asked him if the other doctors in his group were so well informed with broad thinking, and he told me that, candidly, no.....

Still on the hunt - anyone know of anyone in Tucson, Arizona - or for my Mom's sake, up in the Phoenix Valley - who has any clue with regard to EDS - please give me a shout out!!

Reply
Kfaye
5/25/2016 12:10:40 am

http://www.rccxandillness.com/about.html

Reply
Jennifer
10/10/2016 05:39:01 pm

1. Dr. Scott Jensen in Queen Creek at Jensen Family Medicine. PCP has several patients with EDS and is great about looking things up, listening, etc.\
2. Dr. Saperstein at Phoenix Neurology. I haven't heard from him yet myself, (waiting) but he is recommended by Phoenix EDS Support Group and has EDS listed on his website.
Good luck!

Reply
Charlene EDS in Calgary
4/19/2016 06:05:25 am

I am 58 and was just diagnosed 2 years ago. Believe it or not it was a massage therapist that suggested I check out EDS, based on what she say during my massage. Bless her heart! I agree with all of you that even WITH a diagnosis it is not easier to get any doctor involved in your treatment. The best support I have is the EDNF website and posts from other people with the disorder. My prayers go out to all!

Reply
Susie
4/30/2016 09:39:32 pm

Gloria....see Dr. Brad Tinkle at Lutheran General in Park Ridge....one of the top authorities in the US on EDS.

Reply
Eileen Hill
5/2/2016 09:28:02 am

Anyone know of any EDS doctors in Pittsburgh, PA?

Reply
Lori Perez
5/25/2016 10:43:02 am

Hi everyone, I am 54 year old female dx'd by geneticist and neuro at Rush hospital in Chicago2yrs ago. Was never really sick until about 9 yrs ago after I had wrist surgery, 2005 had spinal fusion, adrenalectomy in 2008. After all those surgeries, everything went downhill. Loved my job as flight attendant for 20 yrs (had to leave) big bummer! Was originally dx'd with fibromialgia, IBS, PERIPHERAL small fiber neuropathy etc!!! Finally was sent to geneticist and dx'd with EDS, not one Dr seemed concerned until car accident and I approached them with concern about my Chiari malformation "forgot to mention that!" Had few more MRI'S and was told not to worry, everything is OK!!! Was then sent for neuro psych testing (4hrs) but only about 20 mind with the Dr who "in his report" never mentioned my EDS or Chiari but cognitive and short term memory concerns and then now was given new dx of soma somatic!!!! Really????? He told me that Chiari has nothing to do with EDS!!!! And to not worry, my cognitive and memory problems aren't permanent and I should he another psychiatrist for anxiety and depression! Wouldn't you get depressed?? I have tried calmly and professionally to give them literature but they want no part of it. The Dr. at Rush even suggested that they do more on their end! Nothing!!! Thanks for letting me vent!!!

Reply
Kris
6/26/2016 06:53:50 pm

Reply
Angela Lall
8/22/2016 02:49:38 am

Google Cusack Protocol, many EDSers are getting good results with this. Think Lorenzo's Oil, only for EDS. My 17 yoa dd is on this an finally improving in most ways! She also does cannabis, PEA, LDN.

Reply
Jennifer
8/22/2016 09:32:17 am

I'm off all animal products, glutton, sugar, caffeine & on a daily wort-out schedule.

POTS symptoms gone, B.P. & cholesterol back to normal. I'm able to function. Increased fluid, salt, & vitamin C.

Yay- I have my life back.

Prayers & Love to all.

Reply
Annie
4/16/2017 12:45:54 pm

Yes. Yes. Yes!!!! Liquid I.V. for salt to balance from workout. I'm not off all animal products, but gluten free, raw veggies, organic as I can, berries, hommus, guacamole, good fats.

I swim like my life depends on it. Because it does. My lateral leg strength was in the crapper. Started doing breaststroke and modified backstroke, and 4 weeks later, manual PT said I'm well ahead of the curve on recovery!

You go, Jennifer! We just have to do things differently. Educate ourselves and our caregivers.

Be blessed!

Reply
10/2/2016 08:07:30 pm

I work with clients, on many issues, including issues of connective tissue, and the ANS, using diet and nutrition. Many dietary measures can help. I am a Licensed Dietitian-Nutritionist in Maryland.

My website is not yet up and running - but I put it out, unfinished to respond to this post - my heart goes out to those who are suffering. Please email me if interested in my services.

Reply
Jennifer Bowhay
10/4/2016 01:16:42 pm

Reply
11/23/2016 10:48:21 am

I just read Dr. Pocinki article on Joint Hypermobility syndrome. It was as if he had been following me all my life. I don't have full blown EDS or Marfans but I have symptoms of both. I started taking yoga and eventually completed yoga teacher training as a way to deal with my scoliosis and joint pain. It worked until it didn't (pushed too far) Then I started studying Yoga therapy and am certified for this. Along the way though I found The Melt Method. It is advertised as a way to end chronic pain. It is profound. I'm through two levels of training and have been practicing this on my own for about 5 years. It has transformed my pain, sleep, digestion, mental clarity and focus. Combined with gentle therapeutic yoga, easy weight lifting and non impact cardio I feel better than I have in years.

What I can tell you about Melt Method is that it works to stimulate, rehydrate and repair the connective tissues. It enhances and supports the neural pathways and helps to reduce the pain signals. Short of sounding like an infomercial, this works on so many levels. You use a series of balls and a very soft foam roller to create gentle compression to the tissue to stimulate the connective tissue system. In essence it helps to calm and regulate the ANS and bring balance back in to your body and life.

Is it a cure all, absolutely not. Is it a tool that can get you out of or significantly reduce your pain, absolutely. You can read more about the science of connective tissue research at www.meltmethod.com. There are instructors all over the US and in many parts of the world now. Not all can do everything but everyone can get you started with the simple hand and foot technique. Its quick, easy and the results are life changing.

Now if I get stressed, have the weird unexplained joint pains, have something decide to destabilize itself, I head to my mat and grab the balls and roller. I've worked with hundreds of clients and if you are willing to be open and put in the time to do the work it might save you or someone you love.

After I Melt I then combine this with my yoga and practice breathing, movement and meditation techniques to help me calm, strengthen and stabilize the body and mind.

I hope this helps even one of you. If you need more info let me know or check out the website. Its worth it and you can reclaim your personal power for healing.

Reply
2/8/2017 05:31:25 pm

I am 72 and work out with my large ball, elliptical for cardiovascular for 20 minutes, and used to be able to do the Jane Fonda DVD for seniors yoga but since my total joint replacement, I no longer can lunge so most yoga is out. I also have peripheral neuropathy which doesn't appear to have anything to do with my EDS3. I am healthier than all that sounds and would like to control my pain with less medication. I will check out your Melt Method website. I live in a small town in Colorado with the closest larger town, Colorado Springs 50 miles away.

Reply
Annie
4/16/2017 04:01:29 pm

Sydney,

SFPN, small fiber peripheral neuropathy, has everything to do with EDS. It affects collagen around nerves, too. Was just l preliminarily dx with it upon physical examination by my neurologist.

Take vitamins B12 and D3, also Magnesium. Anything that helps support nervous system. Yep.

Research. Be your own best friend. We're here for each other!

Betrice West
12/1/2016 01:38:14 am

I am Beatrice West of 100 Adams Street, Texas, USA. I want to quickly enjoin all here to help me say a big thanks to Doctor Uwadia Amenifo for his wonderful work he has done for my family for saving my son of his Hypermobility and scoliosis. Brethren, my son by name is called Josh, and he is 18 years old. He was very ill when he was 8 years, and was treated, we noticed that he begin to have issues with working when he was 10 years he always complain of his joints and spine, and we took him to hospital for treatment, and the doctor diagnosed hypermobility, so he was given medications, and we continued to give him his medications until when he was 15 he was also diagnosed of scoliosis in this, my son was unable to Bend forward and backward, He was Walking with pain, he Doesn’t sleep well, Wake up middle of night to toilet and During daytime he can't stand to wee wee and need to rush him to toilet. This continues for two years and I was running hectare scepter looking for how to get a cure for him. I was always doing a research online about his disease, and I found in a blog where a woman aged 50 testified of how she was cured of Ehler-Danlos Syndrome by a herbal Doctor Uwadia Amenifo with the use of herbal medicine, and she didn’t have to undergo any surgery. So I found the info interesting and decided to be in contact with the said herbal doctor. In the blog were the contact details of the herbal doctor. So I pick up his contact and contacted him. After explaining what my son is going through he simply said to me that he is suffering from scoliosis that was when I then told him that also he have hypermobility. So he counseled me, and promised me that he will cure my son with his herbal medicine. So we concluded the arrangement, and he prepared the herbal medicine, and sent it to me in Texas. So I gave it to my son just as he directed and to god be the glory my son was totally cured by his herbal medicine of his hypermobility, and also hos scoliosis, and as I write this testimony, my son is totally cured and can now move well and do all he was made to do. So please I want all here to help me say a big thanks to doctor Uwadia Amenifo for his wonderful work in the life of my son. Today my son is totally cured. Please if you want to talk with doctor Uwadia Amenifo concerning your health issues, and also if you are suffering from hypermobility, and or scoliosis and you want to be cured without surgery just as my son was cured without surgery contact Dr Uwadia now on his email (doctoruwadiaamenifo@gmail.com) or call him on (+2349052015874). God bless you all.

Reply
Beth Johnson
5/16/2017 02:06:50 pm

This comment is a scam. This website explains.
https://www.theseniorlist.com/2017/01/doctor-uwadia-amenifo-scam/

Reply
Becky
2/7/2017 05:58:42 pm

I am a 79-year-old lady. My FIBROMYALGIA disease appeared at the age of 74, with no hope of a cure from the hospital i looked further for an alternative treatments, a friend of mine told me about Health Herbal Clinic in Johannesburg South Africa who sell herbal treatments for diseases including FIBROMYALGIA disease, I contacted the herbal clinic via their website and purchased the fibromyalgia herbal remedy. I received the herbal remedy through DHL couriers within 8 days and i immediately commenced usage as prescribed, i used the herbal remedy for about a month and 1 week, my condition has greatly improved, all my symptoms including Chronic muscle pain, Abdominal pain, nausea, I am fibromyalgia free! contact Health Herbal Clinic via their email healthherbalclinic@gmail.com or visit www.healthherbalclinic.weebly.com.. PLS fibromyalgia is not a death sentence, there is a cure!

Reply



Leave a Reply.

    Amie K.

    EDS warrior.  Find me on Twitter and Inspire as LilacZebra.  Questions, comments, and/or suggestions?  Email me

    Archives

    August 2013

    Categories

    All