By Alan Pocinki, MD
George Washington University Hospital
Joint laxity, or hypermobility, is a common feature of chronic fatigue syndrome (CFS). In fact, I believe that it is a characteristic feature of CFS. Peter Rowe and his colleagues at Johns Hopkins first reported the association of CFS with orthostatic intolerance and joint hypermobility in 1999 [1], and since then, I have not seen a single CFS patient who was not hypermobile, not one. Most hypermobile patients don’t look sick and, as a result, friends, colleagues and even doctors can be unsympathetic. Furthermore, they may spend years unsuccessfully searching for the cause of their chronic pain and other symptoms because many doctors are unfamiliar with hypermobility syndrome and its complex set of symptoms. Sound familiar?
The Beighton score is used to measure a person’s degree of hypermobility. One point is assigned for the ability to accomplish each of the following movements:
- bending your fifth finger back further than 90 degrees (1 point each side);
- bending your thumb forward to touch your forearm (1 point each side);
- hyper-extending your elbows and knees, that is, bending them beyond a straight line (1 point each joint, each side); and
- putting your palms flat on the floor without bending your knees (1 point).
Joint hypermobility syndrome (JHS) is defined primarily by the presence of painful lax joints (a Beighton score of four or more). The soft tissues (muscles and tendons) around lax joints are under constant strain from trying to stabilize the joints, and, inherently weak and lax themselves, are prone to tearing and spasm, leading to pain and stiffness of joints. Many such painful sites correspond to the tender points of fibromyalgia, and joint hypermobility is, in fact, known to predispose to the development of fibromyalgia.
The association of CFS with JHS is not surprising, if one considers the typical features of joint hypermobility syndrome (now considered identical to the hypermobile type of Ehlers-Danlos syndrome, or EDS): fatigue; muscle and joint pain; non-restorative sleep; and autonomic nervous system dysfunction, including orthostatic intolerance and post-exertional malaise. Like CFS patients, hypermobile patients are predisposed to more than a half-dozen different types of headaches. Like the acute onset of many cases of CFS, many hypermobility patients tolerate their symptoms well until an acute stress suddenly causes a significant decline in function. In CFS, the acute stress is often a viral infection, hence the association of sore throats and swollen glands with some cases of CFS. Cognitive impairment in hypermobility patients is likely the result of years of chronic pain, poor sleep and/or poor circulation, much as it is in CFS patients. CFS patients often have other symptoms, such as cold hands and feet, easy bruising and migraine headaches, which are typical of the hypermobility syndromes.
In recent years, I have found that the sleep studies of CFS patients and EDS patients are indistinguishable, both being primarily characterized by an increased number of sleep disruptions and a reduced amount of deep sleep. Autonomic nervous system testing shows virtually identical patterns of dysfunction in CFS patients and hypermobile EDS patients.
A basic treatment program for restoring autonomic balance in both groups of patients is:
- better sleep – reducing arousals and increasing deep sleep;
- adequate – really – pain control, including appropriate exercise,
- physical therapy;
- adequate salt and fluid;
- minimize emotional stresses; and
- conserve energy, rest when needed and don’t “push through” fatigue.
I think the most convincing argument of all that CFS is, in most patients, a hypermobility-associated dysauotnomia is that, despite very low published recovery rates, this treatment approach makes the majority of my CFS patients see some improvement!
Reference:
[1] Rowe PC, Barron DF, Calkins H, Maumenee IH, Tong PY, Geraghty MT. Orthostatic intolerance and CFS associated with Ehlers-Danlos Syndrome. Journal of Pediatrics. Oct. 1999; 135(4):494-9. Link to abstract: http://www.ncbi.nlm.nih.gov/pubmed/10518084.
Dr. Pocinki graciously shared his guide to Joint Hypermobility and Joint Hypermobility Syndrome, which he wrote for patients to read and share with their own healthcare providers as a way of introducing the topic into the CFS conversation.
Dr. Pocinki is a general internist at George Washington University Hospital. His special interests include CFS and related conditions such as joint hypermobility and dysautonomia, as well as general preventive medicine. Dr. Pocinki is a clinical associate professor at George Washington University Medical Center and a fellow of the American College of Physicians. He has served the D.C. Medical Society in a variety of capacities, including as a member of its board of trustees, and was recently honored by the Medical Society with its Distinguished Service Award. He has also served as the president of the D.C. Society of Internal Medicine and was named the national Young Internist of the Year by the American Society of Internal Medicine in 1997. His patients recently voted him one of the “Top Primary Care Doctors in Washington” in a leading consumer magazine, and his peers have similarly voted him one of Washingtonian magazine’s “Top Doctors.”
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For those interested in the literature supporting this observation, in addition to the cited study by Rowe et al, Dr. Kenny DeMeirleir and colleagues published results of this study: Nijs J, Aerts A, De Meirleir K. Generalized joint hypermobility is more common in chronic fatigue syndrome than in healthy control subjects. J Manipulative Physiol Ther. 2006 Jan;29(1):32-9.
Results: Compared with the healthy volunteers (4.3%, 3/68), significantly more patients with CFS (20.6%, 14/69) fulfilled the criteria for generalized joint hypermobility. No associations were found between generalized joint hypermobility and the self-reported measures (including pain severity) or knee proprioception. Knee proprioception was similar in both groups. Forty patients with CFS (58.8%) fulfilled the criteria for benign joint hypermobility syndrome. (Link to abstract: http://www.ncbi.nlm.nih.gov/pubmed/16396727)
This has also been observed in pediatric CFS subjects, as reported in this paper: Barron DF, Cohen BA, Geraghty MT, Violand R, Rowe PC. Joint hypermobility is more common in children with chronic fatigue syndrome than in healthy controls. J Pediatr. 2002 Sep;141(3):421-5.
Results: Of the 58 patients in each group, 71% were female. The median Beighton scores were higher in incident CFS cases than in healthy controls. More incident CFS cases had Beighton scores >/=4 (consistent with joint hypermobility), 60% versus 24%. Incident and prevalent CFS cases had similar Beighton scores. The odds ratio for hypermobility in all patients with CFS versus healthy controls was 3.5 (P <.001; 95% CI, 1.6-7.5).
There are other reports in PubMed that support these observations, but nothing that would approach the size and scope of definitive study.
I am sitting here with my TMJaw wide open! I have been struggling for answers for so many years and reading this is just stunning. I have been dx w/ 9/9 on the Beighton score for hypermobility by 2 Physicians. In addition, I have been dealing w/ CFS & Fibro w/ no success for years!
My younger sister is going in for her second open heart surgery in 1 year to repair now replace her mitral valve .she also has osteoporosis (age 51!) even though she has always exercised, etc.
Many of my relatives live w/ panic disorder, my son has dislocated his shoulder so many times it now can happen just by rolling over in bed…
i could go on and on! But! The chance that there might be some explanations for so many of these odd, seemingly unrelated medical issues brings new hope into my life! Oh, and YOGA had always been my best “sport” until I stopped doing pretty much anything any more from this horrible fatigue, pain, etc. THANK YOU!
INTERESTING ! I “USED” TO BE TOLD THAT I WAS VERY FLEXBLE, BUT I DON’T THINK I WAS EVER HYPERMOBILE. DOING STRETCHING EXERCISES USED TO BE A GREAT ‘WARM-UP’ FOR THE DAY FOR ME…UNTIL I SUSTAINED INJURIES 7 YEARS AGO DURING A DOG WALK/TRAINING EXERCISE. EVERY JOINT, TENDON , LIGMENT, ETC HAS BEEN INFLAMED SINCE. I HAVE SPENT THE LAST 7 YEARS MAKING THE ROUNDS OF DR’S, PHYSICAL THERAPIST AND CHIROPRACTORS. PLUS HAVE TRIED A VARIETY OF MEDS. I ALSO SEEM TO BE MORE CLUMSY, HAVE A LEG THAT DRAGS AND KEEP TRIPPING AND FALLING OVER MY OWN FEET. TWICE IN THE LAST 6 YEARS I HAVE BEEN IN CAR ACCIDENTS WHERE SOMEONE HAS REAR ENDED ME. 6 MONTHS LATER , I AM STILL TRYING TO GET THIS RECENT ‘FLARE’ UNDER CONTROL.
I HAVE BEEN DEALING WITH CFS SINCE 1986 AFTER A SEVERE VIRAL INFECTION. BUT THE PAIN THAT I HAVE DEALT WITH IN THE LAST 7 YEARS IS SO MUCH WORSE THAN PREVIOUS TO THE ACCIDENT AND INJURIES. PRIOR TO THAT I WAS ABLE TO DO A DAILY STRETCH AND THEN A WALK. NOW , I’M LUCKY IF I AM ABLE TO ‘CRAWL’ OUT OF BED AND FUNCTION AT ALL.
JUST WONDERING IF THERE IS ANY INFO ON POST MENOPAUSAL WOMEN AND IF THERE IS A DIFFERENT APPROACH TO HANDLING CFS ‘AFTER THE CHANGE’…OR IS THERE A PROGRESSIVE DECLINE IN LONG TERM CFIDS? I THOUGHT I HAD BEEN PROGRESSING AND MAKING GRADUAL IMPROVEMENTS UP UNTIL 2004 AND THEN THE RUG GOT PULLED OUT FROM UNDER ME. OTHER THAN HAVING MILD OSTEOARTHRITIS, I HAVE STUMPED ALL THE DR’S FOR THE REASON WHY I HAVE THIS LEVEL OF PAIN. I HAVE HAD NUMEROUS X-RAYS AND MRI’S, THAT SHOW MILD DEGENERATIVE CHANGES BUT NONE EXPLAIN THIS DEGREE OF PAIN. MORE PHYSICAL THERAPHY IS NOT THE ANSWER…IT JUST MAKES THE PAIN WORSE AND SAPS MY LIMITED ENERGY.
FACING 60 AND MY SR YEARS WITHOUT MUCH OPTIMISM,
PAT
If you used to be “very flexible” then it’s very possible — if not likely — that your pain is hypermobility-related, as orthopedists and rheumatologists do not recognize this condition, it does not show up on MRI’s or x-rays, and unless you are lucky enough to find a physical therapist who knows anything about hypermobility, conventional PT will make pain worse.
My take on prognosis is that a small percentage (10-15%) of my patients are stable and not improving, the rest are either steadily improving, recovering, or recovered, so I do not believe there is a “progressive decline” though of course if pain is uncontrolled then fatigue, sleep, depression, etc are unlikely to ever improve.
Hope this helps.
Dr. Pocinki
Dr Pocinki
Do you recommend aqua therapy? I have one daughter who is now 18 and suffering from RSD, POTS, Dyautonomia and more but I have another daughter 9, who I am concerned with. She is very hypermobile. I want to know what I can do for her to keep her as healthy as possible.
Aquatic therapy is a very good way for hypermobile people to build muscle tone while minimizing wear and tear and risk of injury.
Dr. Pocinki mentioned in a video something about a medication that was alpha or beta blocker (BP meds) that helped to lower adrenal secretion during sleep and caused less interruptions in sleep. Is there any study I can show my PCP or any way that Dr. Pocinki might work remotely with me.. I’m in CA..
oh my Patricia!
I am in the same place myself…almost 60 & still trying to make sense out of all these seemingly disparate conditions…I am just realizing how much I didn’t / don’t know how many things that have been running and ruining my life (literally!) might just be connected!
Good luck…I will follow your posts in the future since your situations resemble some of mine!
I failed every one of those hypermobility tests. I do sit cross-legged still at 56 years old but physiotherapists (and ballet teachers when I was a kid) have always remarked how tight my nerves or tendons or something are. I cannot even put my had flat on a wall with my arm extended without tight pain. Same with my legs. After 7 years of ballet, I still could not do the splits and I have never been able to touch my toes properly so forget putting my palms flat on the floor even when young. Dr Pocinki has obviously not met me.
I understand what you are saying Judy. Doctors will ask me if I am double jointed in the fingers and I am not. I could never do the splits, backbend or a cartwheel. My wrists and ankles are weak. I have been that way since I was a little girl. If I try to run I get extreme muscle spasms in the ankle. If someone like a small child pulls on my hand I get excruciating pain in my wrist and can feel it pop out. I have scoliosis and very hypermobile shoulders and knees. My neck is straight line with no visible curve. It gets so fustrating to find a doctor that understands all the pain that goes along with it.
For Patricia L. White – CFIDS doesn’t worsen with age – I have had CFIDS since they called it Epstein-Barr or Post Viral Syndrome in 1983 (in Princeton, NJ) – a “wastebasket diagnosis”. Had two very stressful fast track jobs from age 45 – 55 and finally changed my life entirely as the disease prevented me from working as I had been able to. In short, there is not (I believe) a long-term decline in progressive CFIDS. There is no difference (I found) between pre- and post-menopause in virulence of the disease. CFIDS is what is is, like many other chronic diseases, and at age 73 I am content and optimistic and take life as it unrolls like the yellow brick road in front of us all. Certain life changes (in living conditions, in perspective), have been valuable and wonder-full. Reminds me of the joke “the doctor said ‘Cheer up, things could be worse!’ and so I cheered up and sure enough things became worse! The secret to managing this disease is accepting it and getting on with whatever life events we can. Pity parties aren’t the answer. But treating yourself well, however you can, is a blessing. Gumption, that old-fashioned value, is difficult to muster, but muster it you can and you can tell yourself “I can do this!”. We are all in the same lifeboat on this planet (beset by horrendous global ills) and we can continue rowing as long as an iota of strength lives in our bodies. Good luck to you, Patricia L. White, I wish you well! Kind thoughts from Nan Socolow
Pat,
My understanding is that menopause does create some unique issues for women with ME/CFS because of the underlying hormonal issues associated with this disease. I remember Dr. Nancy Klimas speaking once about hormone replacement therapy (which should be taken with a great deal of caution as your primary care provider or ob/gyn will probably note) and how her menopausal patients seemed to find it quite helpful (making the issue all the more complicated). Unfortunately, I couldn’t begin to remember where I read that as it was years ago! But I suspect you’re not alone in finding your symptoms getting worse as you enter menopause. Perhaps Kim can answer this question more fully as I’ve not the strength to look up the research (little that there is at this point) on the issue of menopause and ME/CFS.
I also wanted to let you know that you’re not alone with regard to pain either. I’ve always been “freaky flexible” as well as clumsy. Around puberty (again with the hormone flux!) I broke a number of bones from various falls (not to mention tore ligaments, tendons, etc.). While my fracture days are well behind me (a freak fall down the stairs at my acupuncturist a few years ago aside…), I live with tremendous pain that my physicians are having a difficult time understanding. I suspect that my hypermobility is probably the key to explaining a lot of the burning pain in my joints (especially) and throughout my body.
I’ve found that physical therapy has been very helpful provided I focus on strength training (making my muscles as strong as possible — with “as possible” being key) rather than aerobic exercise. And I generally do just a ridiculously small number of reps (2-4) while laying in bed (I’m mostly bedbound). Mostly just enough to remind my muscles they still need to keep working!
Interestingly enough, there was a study that came out last year showing that physical therapy exercises using just a few reps could be just as effective as those using the traditional 8-12 reps (again, no energy to hunt that down – sorry!).
It’s tough because most of us do not have health care providers who know anything about CFS. Trying to explain the difficulties with aerobic exercise and hormone dysfunction and hypermobility can be like banging your head against a brick wall. Which is why we need good research and treatments for this disease. Now.
Ok. I’m done rambling. Just wanted to say that, while I’m not quite at menopause (I’m 38), I also understand your concerns about menopause, pain, and the sometimes progressive nature of this damnable disease (I was relapse-remit from 1999-2005 but since then I’ve ended each year in worse shape than the year before).
NAN, THANK YOU FOR YOUR WORDS OF ENCOURAGEMENT,
I ALSO HAVE BEEN WITH THIS “CFS” THING SINCE THE FIRST EBV DAYS.
IN 1987, I MADE ALL THE “LIFE CHANGES” NEEDED TO BATTLE THIS ILLNESS. MY PROFESSIONAL DAYS ENDED. I HAVE “LIVED” LIFE IN A VARIETY OF ‘FAMILY CARETAKER ‘ ROLES OVER THE YEARS.
6 YEARS AGO, OTHER “LIFE CHANGING ” EVENTS TOOK PLACE AND ANOTHER MAJOR SHIFT HAS BEEN NECESSARY. SINCE MY INJURIES, 7 YEARS AGO, I HAVE FOUND MYSELF MORE IN THE ‘CARED FOR ‘ CAPACITY. LIFE HAS BECOME VERY LIMITED. ALL OLD PASTIME AND HOBBIES ARE NOT POSSIBLE ANYMORE.
MY NEPHEW, BOUGHT MY SISTER AND I A ‘NOTEBOOK’ COMPUTER LAST YEAR, SO I HAVE BEEN ON MY ‘MAIDEN VOYAGE’ INTO THE INTERNET WORLD OVER THE LAST YEAR. IT BEEN A GOOD OUTLET AND A DIFFERENT WAY TO RELATE TO OTHERS.
THANKS AGAIN FOR YOUR WORDS OF CHEER
PAT
MICHELLE, IT SEEMS WE ALL TRAVEL THE ‘SAME JOURNEY, BUT ON MEANDERING PATHWAYS . IT HAS ALWAYS BEEN I BABY STEP FORWARD, AND A GIANT STEP BACKWARD FOR ME. BUT I DID EVENTUALLY AFTER MANY YEARS PROGRESS TO A LEVEL THAT I COULD PRETEND TO BE “NORMAL” ON A PART TIME BASIS.
I WILL ECHO YOUR MESSAGE FOR FOR EDUCATION AND AWARENESS FOR THE MEDICAL PROFESSION. THIS WEEK I SAW ANOTHER “ORTHO- SPECIALIST” AND I WAS MET WITH THE SAME ‘ARROGANCE AND IGNORANCE ‘ AS I HAVE BEEN MET WITH OVER THE LAST DECADE.
AS FAR AS THEY ARE CONCERNED, IF THERE ISN’T A TEST “TO DIAGNOSE” IT WITH, THEN IT DOESN’T EXIST. ANY ATTEMPT TO HAVE AN “INTELLIGENT DISCUSSION’” TO MAKE THE DR AWARE OF MY MANY UNDERLYING CHRONIC HEALTH ISSUES WAS MET WITH A DISMISSIVE WAVE .
TO ME, IT IS VERY IMPORTANT THAT THEY UNDERSTAND THAT I REACT DIFFERENTLY TO WHAT EVER DRUG, THERAPHY, OR POTENTIAL SURGERY AND THAT I JUST CAN’T BE LUMPED INTO THE “NORMAL” STATISTICS.
THANK YOU FOR YOUR PERSPECTIVE AND I HOPE THIS YEAR ENDS ON A BETTER NOTE FOR YOU
PAT
I had to keep pushing until I went to a Genetic Doctor who was an expert on Hypermobility! He took my history told me that being 50 yrs old my Brighton number could be 0 and still have Hypermobility. After giving him my history and the exam he left the room so I could get dressed.
When he came in the first thing he said was “You must have been a hell of a kid!” I asked why did he say that?
“You are 50 yrs old and your Brighton score is 7! I have never seen this score at a person you age. But I think Ehler-Danlos Hypermobility Syndrome came first, but only 5% know about ED Hypermobility. That is why they diagnose Chronic Fatigue Syndrome and then find Hypermobility. Well I never had trouble with CFS until I got ED Hypermobility Syndrome which lead me to believe the Doctors do not find Hypermobility Syndrome which is there first before CFS
Patricia – I would be happy to answer any questions you might have about living and aging with CFIDS. Though my life is somewhat circumscribed (i.e. small as a walnut), I live in the tropics, in a quiet and tranquil place (no traffic lights, no roadside signs, a 2-lane road everywhere on this small British island) You didn’t say where you lived – i.e. in the US?Canada? elsewhere?and if you were north or south, east or west. I discovered that for a chronic disease, a comfortable climate and the freshest air possible (i.e. no pollution, no icy winters) is key. You may email me at nan@candw.ky, if you like. Be hopeful. Life is wonderful while it lasts. As for inability to have a hobby or pastime, there are many hobbies that don’t require money or great expense. I have found several that don’t cost anything, endeavors that I really enjoy! Goog luck to you, and keep your chin up! Nan
Like you i am going through the change and getting hormone replacement therapy was a blessing for me. Hrt helped with the pain and sleep deprivation. i will take this as long as they let me. The testosterone helps with the fatigue and muscle tone, and the progesterone actually puts me to sleep without any of the nasty side effects and weight gain. In fact i have lost 70 pounds and have improved physically.
I know that all of my improvement is not due entirely to HRT, i have a great surgeon that keeps putting me back together when i break and he is not afraid to help with the pain management. Right now life is good and i am one of the rare eds’ers that has improved, too bad i could not have been in this kind of shape when i was in my 30′s. I am loving life, finally.
I am also not the typical hypermobile patient as measured by the Beighton score ‘card.’ However, my sacral ligaments became ‘hypermobile’ after a chiropractic injury. Sacral ligament hypermobility ( and instability) can result from various life experiences, especially for women since we have wide pelvises and anatomy that allows one less sacral segment to ‘lock’ with the ilia ( hip bones). These issues may cause sacral hypermobility: hitting the car brakes, kicking and missing a ball, pregnancy/childbirth, fall on tailbone, twisting and lifting, hormonal changes, and even sitting for long periods in a poorly designed chair. The sacrum is the foundation of the musculoskeletal system, and the attachment area for the lining of the entire central nervous system. The filum ( nonnerve connective tissue) attaches to the spinal cord, fuses with the CNS lining ( at S-2), then fuses with the tail bone. Plus, osteopathic and craniosacral practitioners point out that the sacrum is critical to the pumping of spinal fluid from the sacral bulb back to the brain, ie: the craniosacral pump. I asked a neurosurgeon how spinal fluid gets from the sacrum to the brain, and was told, ” Well, it just sloshes around.” Against gravity ?? How much is known about the circulation of spinal fluid from the sacrum to the brain ? Can a rotated or dropped sacrum influence the function of the blood/brain barrier ?
Alan Lippitt, MD, orthopedic surgeon and specialist on the pelvis has written, ” Any alteration in the normal mechanics of the pelvic girdle will have a profound effect on the function of the entire musculoskeletal and nervous systems. “
i was diagnosed with EDS type 3/hypermobile in 1996. According to the Beighton Scale I’m a 9. I have great trouble getting my pain under control and was glad to see this article when I’m about to go see my internal medicine doctor in a few weeks. I’ll discuss this with him (since I’m multi-sympton disease too: diabetes type 2, pre-cancerous thyroid nodules, hypercholesterol/triglycerides, and sarcoidosis in addition to the eds.)
I am not suprised at the discovery of hypermobility with CFS, I was not diagnosed until 3 years ago at the age of 51 but have experienced constant pain and chronic fatigue all of my life.
I have scared doctors after they have performed abdominal surgery on me and while recovering would not ask for so much as an aspirin because the amount of pain I have lived with all of my life was far greater than broken bones or being sliced open.
They have told my wife I could be on the verge of death and they would never have a clue because my tolerance for pain was so great, but that does not mean that we don’t feel the pain it just means that we have been forced to tune it out as much as possible or never would we be able to funtion in society.
I hope in the future there will be greater understanding of these invisable illnesses and the burden of those afflicted because it truly robs you of the ability to have an enjoyable life but instead forces you to suffer a lifelong painful existance.
But I fear most for the children, I have never been able to find the words for what it is like to be a child having to fight for your life everyday with an unseen monster dominating your life but all I can say is that I can never even think back to childhood without being reduced to tears.
Thank You to those doing research, and best wishes for those affected!
I’m having a hard time understanding the point of this article. Are you suggesting that people with CSF actually have EDS? I don’t think you have a very good understanding of EDS if that’s your conclusion based on CFS patients being hypermobile.
First, there are many types of EDS that have a hypermobile component but there are also EDS types where hypermobility isn’t a strong symptom, 2nd there are other systems that are affected by EDS (particularly skin, the vascular system, joints), 3rd EDS is a rare genetic collagen disorder with its own distinct genetic testing and diagnostic criteria that while overlapping in some regards with CFS does not mirror it, 4th EDS, does NOT come on suddenly as you have claimed, though there are some who experience an increase in symptoms at certain times. I have yet to meet or hear of anyone who has been diagnosed with EDS who described a sudden onset. In fact, if they did describe a sudden onset, I would think most EDS knowledgeable geneticists would exclude a diagnosis of EDS based solely on that!
EdS is a life time disorder of the connective tissue and most of us have been suffering with symptoms since we were small children. We suffer dislocations and sublexations, and have a long history of other orthopedic injuries and surgeries often time starting at 8 years old or even younger. We have early onset joint destruction from osteoarthritis.
Many people are hypermobile without having EDS, and some people with EDS have been diagnosed (often wrongly) with CFS, but I don’t think you’re doing any CFS patient any favors, and certainly not doing any good for those of us with EDS by presenting a tiny slice of EDS symptoms that over lap with EDS as significant or possibly revealing a commonality of disease causes. Could hypermobility of the joints together with a precipitating event bring on CFS? Maybe, I don’t know. But it certainly would not bring on EDS.
I have been diagnosed with EDS and I am 52. My symptoms started after an electrical injury at 50 also I was considered in menopause at that age. ( do not know if somehow involved) I had no problems before and now in a mater of months I have loose joints, pain ( ankles, feet, knees, hips, lower back, neck, shoulders, elbows, wrists and fingers) and injuries. My life has turned upside down and my fatigue is great. I also have muscle fasciculation’s. I have been to many Doctors during this time and was diagnosed by a geneticist at Vanderbilt. One thing I will say is there is not much knowledge on the subject and even less help. It seems you are on your own. As an older person with this disease it would be helpful if there were information on as you age.
To te author:
Sorry, but we are not “hypermobility patients”, we are people WITH hypermobility syndrome
Regards
As a patient with Classical EDS who has had disabling chronic fatigue symptoms at times, I appreciate the attention to the subject, and do believe that there is an overlap between the two conditions. However, while the CFS symptoms may wax and wane, as do other EDS symptoms, I believe that, over time, EDS symptoms do progress.
My joints are so unstable at this point that no amount of exercise helps them, though exercise does improve the dysautonomia and, consequently, the CFS, as long as I don’t overdo it. My GI symptoms require daily management. Even my internal tissues are stretched: bladder, colon, heart valves, and cervical dura. So, sleep, pain meds, and exercise will never help me to “recover,” though they may ease my symptom load. And, yes, menopause has increased my pain level and susceptibility to injury.
But,although that litany of woes may make me appear to be depressed, I am not. I know what is wrong, and have tools for management. I am starting a new business, albeit on a very small scale and remain as active as I possibly can. CFS is just part of the picture. It’s a part that needs attention, but addressing the CFS will not lead to “recovery” for EDS patients like me.
Hi Ginger,
If you do not mind, I would like to ask you a few questions about your pain and how long you’ve been disabled. I am going through a severely difficult time and having a hard time finding doctors. I just thought if I could discuss it with you I might find some understanding. If you do not want to, I understand. Thank you for your time. – AJ
As one of teh rare EDS patients who is still able to hold down a full time job I appreciate the research findings that all of the CFS patients have hypermobility.
As stated all hypermobility may not produce pain and fatigue but if if the combination of pain and fatigue can be directly linked to hypermobility then it gives physicians something that might help diagnose those with problems in the future.
I have long suspected that all fibromyalgia and joint hypermobilty syndrome were maybe just milder cases of the EDS hypermobility type because the symptoms overlap so much, but the people can not demonstrate enough points on the Beighton Scale to be documented but I can not help but feel that they know and feel our pain.
In my experience on the EDS boards I have found that those of us who exhibit symptoms from birth are more the exception than the rule and that hormonal events seem to trigger onset of the worst symptoms of the disease.
But this article actually seems to be targeted to the people who have CFS to explain to those and their families why they face the same problems that we with confirmed HEDS face to help them have an understanding of how and why, and in my opinion I think Dr. Pocinki has done a wonderful service with this research and I am thankful that Research 1st has published it because if it can even help just a few of those who have these problems and are needing answers I think it was all well worth it.
Hi Danny,
At this time, I too work full time and have a two yr old. Recently, I have started to have a lot more pain. It is taking its tole on me, and lately I have been missing work a lot more. My boss says I am the only person who actually wants to work. (lol) I haven’t had any major events to trigger my EDS, beside a c-section when I had my daughter, in well over 5 yrs. I do believe fatigue and stress from daily life and work has pushed me to where I am. There really isn’t much else that I can think of that would have caused me to go downhill so fast.
I couldn’t agree more about what you said concerning this article. It truly opened my eyes and allowed myself to not be so upset with my body. The exercises he listed will be very helpful for me to know where my limits should be, instead of trying to do it all, at work and home. -AJ
I, too, am bothered by some of the statements in this article. For one thing, referring to CFIDS/ME as Chronic Fatigue Syndrome at this late date makes one wonder just how in touch with that community one has really been for the last few years. I think most of us would admit that this in itself has been a major grab bag diagnosis, primarily due to the use of various research criteria over the years including and excluding patients rather arbitrarily. To lay onset off so casually to viral infection in the face of other known and suspected onset criteria does not reflect what is presently known. The same goes for attributing adrenal dysfunction to a whole lifespan of chronic illness. Correlation does not prove causation.
And now, we see the same grab bag coming into being with the haphazard interchange of JHS and EDS. They are not the same – if for no other reason than demonstrated heritability of EDS and its extension to much more than mere joint issues breaks the interchangeability down instantly. As another commenter stated – EDS doesn’t just appear out of nowhere. It’s there even before birth. And it does come with degenerative conditions which CFIDS patients may or may not ever encounter. (Just ask those of us who’ve lived with it for a number of decades.)
For examples of other causation – greater vulnerability to certain neurotoxic effects has been well documented in many EDS cases now – and is all but indistinguishable from a post-viral syndrome. The exception is that the toxicity problem begets immune disorder – not the other way around.This is well known even among some from the Incline Village outbreak, with or without EDS.
If I know of many CFIDS cases without JHS or EDS, and EDS cases without CFODS. Why don’t you? Everyone else seems to have seen them, including those practitioners who regularly perform Beighton Scales with their patients.
To find so many absolute statements woven into
The article by Dr. Posinki illustrates my journey perfectly. I had a major “crash” 8 years ago post brochitis, with severely debilitating pain and fatigue. After years of unproductive doctor appts I was able to claw my way back to relative health with methods I devised on my own and on the advice of other non-medical folks (I was diagnosed w/ CFS and fibromyalgia at the time). 5 years later my children had very different, but severe, medical issues which were attributed to EDS, and in the process of diagnosing them, I was also diagnosed (completely unexpectedly). After researching EDS, and going to the EDNF confs for the last two years, my entire life was brought into clear focus for the first time. All the odd medical issues that have happened since childhood that were overlooked or ignored by doctors were suddenly explained. I heard Dr. Pocinki speak at both those confs and, after the initial talk, I felt for the first time in my almost 50 years of life, like I was hearing from someone who “got it”. From what I heard in his talks and what I gathered in speaking to him one on one, I can tell you he has seen hundreds of patients as he has described, and has a sincere desire to help them (and has!). He has put forth incredible effort on behalf of his own patients, in addition to trying to educate others (and their doctors) as to what might be helpful. He may not be speaking to everyone who ever had CFS (the most common terminology used) or EDS, but he has certainly helped hundreds and is right on the mark for a great many people. Thank you for your efforts, Dr. Pocinki.
Hi!
I have the Hypermobile EDS variety. I also have Von Willabrand Factor 8. I have considerable pain and earlier this week had a Radio Frequency Oblation of the SI joint (right side) to try and releive some of the discomfort. I am concerned about remaining in bed so much, mostly because I do not know what will cause more pain and damage. It seems everything I do has made me worse. When I saw the PT at my local hospital, they were not very familiar with EDS and I had additional pain after each session and had to stop. How can I figure out what movement I can do?
As EDS is genetic and fibromyalgia is not genetic, they may produce similar symptoms, but by definition are not can cannot be related. Therefore, perhaps it’s possible to treat fibromyalgia-induced CFS and not EDS-spurred chronic fatigue syndrome. (If someone knows the answer to that one, please do share, as I’m of the unlucky EDS Classical posse). Therefore, I have to disagree with Danny that fibromyalgia is a lesser form of EDS, though they certainly share common symptoms.
While you can’t say FM is genetic here is increasing evidence of a surprisingly high genetic component to FM. One wonders if there is a genetic overlap to some extent.
Dr. Pocinki,
I have EDS hypermobility syndrome and need a doctor in the Philadelphia area. Do you or anyone out there know of any?? It’s so hard to find one. Thanks!
Dr Pocinki,
I have EDS III, hyper mobile, CFS, POTS, Migraines, and NCS (Fainting). I have episodes (not every night) where I am awakened by as I call them “waves of dizzies”. It is almost like a jolt awakes me, and then I feel the same heaviness in my body and lightheadedness that I get when I am about to faint. It only lasts a few seconds. It scares more than any other symptom, and is the only time I am actually scared for my life, with all my illnesses. I have mentioned to may doctors about this. One said it was a small seizure and no problem, one said migraines, and my current POTS Dr is the only one who has listened and is setting up a sleep study. I want to make sure the right study is done to check disturbance in my ANS, or blood pressure. Is there one that you would recommend? is there a special study disgned for this, as there is for Narcolepsy? My sleep study is Friday 3/9/12. I know this is last minute, but any help would be wonderful.
Thank you!