Spine Time: Ehlers-Danlos Syndrome
Вставка
- Опубліковано 19 сер 2020
- Ehlers-Danlos Syndrome: How outcome tracking helps us create an effective care plan
Dr. Neel Mehta hosts with featured experts Dr. Norman Marcus and Dr. Tiffany Lin.
Originally aired August 19, 2020 over Zoom.
Part of the Spine Time series from Och Spine at NewYork-Presbyterian at the Weill Cornell Medicine for Comprehensive Spine Care
neurosurgery.weillcornell.org
Past Webinars: • Spine Time Webinars
Join our Back Pain mailing list to be notified about future spine care events:
lp.constantcontactpages.com/s...
Iyengar yoga has taught me just because i can, doesn't mean i should. The balance of getting hypermobility under control by awareness awareness.
Diagnosed at 56. The dr.s called me double jointed when I was a kid. Nobody believed my pain, nobody. Every step I have taken in memory has been painful, and I can work my way up from there all the way to my head. Two broken and dislocated arms and a bout of paraplegia after a fence fell on me, all of this by the age of 4, and still nobody understood. I use auquatherapy and acupuncture at this time. I don't tolerate pharmaceuticals. I use medical cannabis, it helps, but I wonder frequently when I won't be able to walk any more because of the pain. I also have fibromyalgia and osteoarthritis and neuropathy. I am very, very happy you are now studying this.
I understand and sending you a BIG HUG. This is a tremendous breakthrough for so many of us that have been suffering, bewildered, frustrated- alone..for forever it seems.
...some of those conditions that u mention having; fibromyalgia, neuropathy etc sound like symptoms where a lot of ppl understand them as medical conditions. If doctors woukd explain things to us in this way i think it will shift how we can help them.helpmus better
I’m worried I have an undiagnosed condition or syndrome having to do with all my ligaments and or tendons. I’ve dislocated my shoulders 11 times. Had surgery on my left 10 years ago and surgery on my right a couple of weeks ago. There is a lot of grinding around my shoulder blades. I have instability on the left side of my jaw and I constantly pop my ears throughout the day. I have woken up with my jaw dislocated and needed to massage it back into place several times. I have been experiencing ringing in my ears more frequently and loudly lately. All this seemed to get worse after attempting unsuccessfully to scuba dive some years ago. I had orthodontic work done as a kid but now I need more. I was going to start on the TMJ path until I dislocated my shoulder again. There is a spot in my spine around my lower middle back that clicks/pops when I straighten my posture and has been getting more and more pronounced/uncomfortable over the years. My knees frequently lock or stiffen up on me and I have to self adjust in different ways to get them to pop and return to functional, and I have a strange ability to pop my ankles over and over. I need to get to the root of the problem rather than treat each symptom as they arise. Any thoughts or advice? I’m 34 years old.
Work with a physical therapist to strengthen your muscles, as your muscle is what will have to hold your joints in place. Never ever again intentionally pop your ankles or anything. Your muscles were not made for that kind of range. Do your best to stay within "normal range", this is a hard one as I don't know what is "normal". A PT will help you with this. Also I sometimes have to have my husband make a move. He is super tight so I know it is somewhere in between his range and my range. I don't do things that I know will throw me out of place. When I am out of place if I can't get myself back in, I see an ortho Dr. that will work on getting me back in. Also stretching is important, try to only stretch within your muscle boundary. I also have been going in for acupuncture which has been very helpful for many issues. I can't take nsaids for pain so I use the medical cannabis as I am in constant pain, this for me has been a God Send. I also take an anxiety medicine for my neuropathy pain which helps with both pain and anxiety. I take a break about every 20 min as my muscles spasm. When they stop I go back to what I was doing. You really do have to take each issue for itself. See a gastrointestinal specialist for your digestive issues and the eye Dr. yearly. I very much am limited with travel as it twists my spine. I haven't figured it out yet, but some day I will. If you accept the fact that you have a physical range in which you must live you can find some level of comfort. I am old, I worked very hard until I was 56 in so much pain al of those years. Don't just accept it like I did, learn about yourself so you can truly live.
I understand, many don't. This might be why Christ calls us his diamonds in the midst of being polished. After all that pressure we can empathise unlike any others. I used to womder why scripture warns of swearing oaths, Dr's will be held to theirs on judgement days. With all the arrogance of a God they proclaim their judgements among those they know zero about. Quite sad really for they condemn themselves
I was diagnosed heds at 50 by a rheumatologist and then told by the same that he couldn't help me. Apparently, no one can. No one knows what it is and wants to treat each symptom as a stand alone problem. I'm tired of going to physical therapy when it doesn't help. I have GERD, scoliosis, and arthritis with bone spurs all over. My spine from the neck down is a mess. I have joint and muscle pain every day. Closest doctors for eds are in the state capital and booked a year in advance. I turn 54 on Saturday. I doubt I'll ever find a doctor that understands.
It really is tough living with chronic illness, I'm so sorry to hear you've been through it as well. I had an adult cardiologist as a teen tell me I was probably just drinking energy drinks without my parents knowing and just said if it was something I could 'worry about it later in life'. I really miss going to pedestrians because my Cook Children's cardiologist saw his notes and tested me for POTS the same day before my EDS genetic diagnosis.
I'm 23 now and have given up on seeing specialists because of how uncaring doctor's can be in the adult field. It's as if they seemed offended when I know more about an illness I've been living than they do and it reflects in their work. My last appointment with someone for leg pain had ended with the nurse asking me if I'd "tried advil" when I take things like lyrica. I really wish things would change.
We must.have the same doctors!
Does anyone feel like body is squashed by weight while sleeping? Feel numb, stiff and lung feel extremely heavy and tight for hours upon Waking.
Of course fibromyalgia dx. Life's so hard 😪
I'm 47 and was only just diagnosed with h-EDS. I have scoliosis, have had 4 shoulder dislocations, IBS, low blood pressure and POTS, lots of chronic joint and muscle pain, tons of allergies, brain fog... I was sent to multiple specialists without anyone ever mentioning or thinking of EDS
That's because even when they do diagnose they have no experience and no idea what to do, which is better than the ones that know something about EDS and refuse to learn any more. My diagnosis has got more treatments denied and 0 offered because technically there are 0 fda approved treatments. Diagnosis was a garbage can to throw me away in. Im sorry to hear your suffering, I am younger with all the same and more. Having a baby transformed my back and rib cage and I'll never be the same. :( I just want to be able to do things for my child.
@@kittyarcade2296 that sounds painful. I'm sorry to hear. Good luck with your back and ribcage. I have heard prolotherapy can help, but haven't tried it yet. I wish you health and ease, esp with the parenting!
Me too im 60 soon ive seen so many Drs unreal x
I was diagnosed by Dr McCusick at Johns Hopkins in 1998 - I think - it may have been 1997 or 1999. Lol, memory. The 'treatment' I've received both prior to and afterwards is pain mgmt and surgery as a last resort. If something won't be relieved by pain meds and shots then I get water therapy for the symptom and/or custom orthotics and braces. I've boxes and drawers of braces, bands, etc. I go to pain treatment monthly. I get shots, blocks and meds. Wish me luck on the most recent injury from sleep and making a bed as I've torn the ligaments in my shoulder with of course, bursitis and arthritis. My sister has had two surgeries in the same shoulder and one in the other; to get back to using them. She is a person who won't slow down until injury and won't listen to doctors about not pushing beyond. She will be the end of herself.
I've come to accept my limitations and do things like read until my optic neuritis says otherwise; needlework until my hands and wrists say stop; watch documentaries, movies and shows. I feather dust; get my nephew to vacuum when I can't take all the dead bugs, leaves and soil from taking my tiny dog outside and because I live in the basement of my families house (so you have the bugs).
I've had years of psychiatric social work, actually over a decade of seeing a LCSW-C before I came to accept my life as it is. I give myself pleasure of teaching children in various aspects of school or life with tutoring and babysitting self sufficient ages. Such is life. If I can help people with Ehlers Danlos Sydrome in coping all the better my life is.
@@kittyarcade2296 I get the rib cage and I've not experienced a full term birth. My uterus/cervix refused to stay closed so they were lost however, my ribs flex and pop with certain positions and even after all these years, I can not predict the subluxation. I do understand my stomach (lack of) muscles and skin getting stuck under my ribs and bruising. I usually know how far I can bend while sitting without catching them but when I fell yesterday it was so swift I couldn't move to prevent my ribs from subluxation nor my skin bruising from being caught underneath. I now have a bruised back, stomach and inflamed rib cage at my left thoracic spine to upper lumbar (approx T12 to L3) and costal sternum in front. The inflamed costal and bruised muscle feels like I was kicked while down. I'm there on the breathtaking pain. I get to home remedying as much as possible and Magnesium oil is my friend often, except for willingness of others to grease up their hands. I now need to purchase restaurant throw away gloves as it takes so much Dawn to remove oil from regular kitchen gloves. I abhor plastic though. Maybe I can convince my sister to just wash her hands - maybe I can't - depending on the day, Ugh! Epsom bath helps too and using the Mag oil after helps with the drying of skin from bathing in treated town water. I haven't thought toward injection in my front rib cage but just typing this gives me the 'uh uh nope nada' shiver. Those needles are bad enough when you can't see them coming and I don't know that I can keep my curiosity from looking in the front; that's if 'they' do things like that.
So my shoulder is a bunch better from injection as long as I do not lift more than 32oz water and ice cup or stretch my arm out up and then downward (say putting dishes away). How are you now and what are doing for relief, if any? Do you live in East, West etc of US? I certainly suggest anesthesiologists for pain treatment as they've trained in persons not feeling what is being done in injury or treatment. They can order tests like any other doctor, i.e. MRI, CT, Xray, PT, OT etc. If I've an injury that requires surgery then they send me to Ortho..... I do have secondary conditions related to EDS invoked inflammatory disease as well as a cpl other specialists for the part(s) of the body EDS decided to affect randomly or consistently but such is life for a Zebra huh. I wish you assistance, consideration, acceptance and understanding. ✌️🐸
I'm 53! My whole life. Surgeries. Long long long recovery times for injuries and non-trauma dislocations of shoulders knees, ankles, thumbs. I easily pass all the Beighton Score Tests. They told me I have fibromyalgia. I only looked into Ehlers Danlos because my daughter is currently being evaluated. I sent this video to my GP. He and I are going to discuss this today.
I was diagnosed with Fibromyalgia at 25. I'm angry that no one saw that I have all the symptoms of HED. Maybe if they caught it then I wouldn't have been .misdiagnosed so many times. Now at 60 they tell me that it isn't worth being tested.
Thank you for your time making this video. This is myself, my two sons, and my two sisters. It’s so incredibly painful and exhausting.
#Collagen heals literally ketosis kept you alive. There are these conundrums medical science can't fix a phenotype that will over react to any fiber or vegetation consumed
Any vegetables and any plant matter or derivatives should be avoided.
#carnivoreCure @nutritionwithJudy
#DrDominicDagostino #ketosis expert
#DrDaleBrenesen fat #altzimers expert
#DrDonaldLayman #protein expert
#DrThomasSeyfried #cancer expert
#DrJasonFung #intermitentfasting
#DietDr #metabolicMind #meatheals
#DrShawnBaker #carnivoreDiet
#Revero #reindeerherdsman
#transhumancy #regenerativeAgriculture
#richardPerkins #dutchFarmers
#savoryInstitute #charlieFoundation
There are many experts trying to find the #properHumanDiet #DrKenBerry
#LiesMyDoctorToldMe
#DrBenBikman #whyWeGetSick
#DrBoz #AnyWayYouCan #keto
#DrRobertKiktz #Pcos
#DrHoltz #biohackers even though the hackers describe these HITECH vitamins and substances they consume and they are pushing more plant based vegan eating MOST ALL the substances they use are beef byproduct derivatives .
All those nutrients you will find in a piece of meat specially beef, bison or deer meats and from it internal organs of these animals especially the livers.
#Phenotypes
Type 1 diabetes, Gastroperisis, glaucoma
Cancer, altzimers, brain tumors epilepsy multiple echlerosis ,muscular dystrophy, dysplasia etc etc. Specially when people find no solution it seems to be based on these anomalies of condition that no one can explain. It's been proven it's not in the human genetics but the nutrition is able to change gene expression and species specific nutrition is what will help these condition when they occur. The whole of the earth is a #fooddeserts and I'm sure the #fertileCrescent is misrepresented.
People in deserts, forests, jungles, and frozen tundras and mountain tops must hunt herds of animals in order to survive.
#AmericanIndianReservation
#metabolicHealthSummit
#ketoCon #LowCarbDownUnder
#LowCarbUSA #TimFerris
#PeterAttia biohackers #levels
#pulse #longevityProject
Good luck finding your solution. Just know that what heals your brain is also good for the body. God bless!
The problem is no you have no who has the disorder studying or treating it, consequently there is a lot still being neglected. For example, after time you may no longer be visibly hypermobile as after years, you develop fibrosis and arthritis. You need one of us on that side to really shed light on what is going on through, clinical practice, and to truly connect with others suffering. Awareness and compassion for this condition it greatly lacking but I have hope that changes soon.
Diagnosed finally at 41. Due to me figuring it out and putting the pieces together and then 3 years after finding the right doctors who listen and take me seriously.
We need a million of these docs in california. i have multiple smashed discs from body building for years with EDS and all they want to do is hook me up with a opiate contract and pin everything on my back, or dismiss it altogether... yet ALL my joints and bones hurt and aaaall the muscle i built up on my back is now spasming(pulling on herniated discs with extreme laxity) and can drop me on the floor if i even point at something too fast. multiple 5-6mm osteophitic bulging discs alongside joint laxity is obscene, but it reads as barely touching in my stationary MRIs... 8/9 5/5 6/12 3/3 on the checklists with no other alternatives diagnosis yet... but all my kids have paper thin skin... can still see all the veins on my sons face along with 8/9 on the beighton scale and he is 4 years old and in love with our trampoline... just scares me for his future and the current lack of knowledge on the condition.
keep that kid and probably all kids away from the trampoline!
I would strength train on machines that control unwanted movements while the kid is young, not now at four but when hes older. because after he gets arthritis he won't be able to benefit in the same way.
I'm 62, and as early as 30 working out was out of the question. So when I hear people advising others to train to strengthen the muscles around the joints I have to say, for me, it's too late for that. So, maybe now is the time to do the strengthening. Good luck.
Attitude is everything, don't allow this to become your whole life. please
🤯🤯... so many kneecap dislocations. started at like 14. scoliosis. the pain. stomach issues and vomiting my whole life. flat feet etc etc. nobody has ever taken it seriously. 😭 there's a reason.
Same. I'm 84 and both my knees have chronically dislocated since I was 15. scoliosis, IBS, asthma and PAIN.
If the moderator would have stopped butting in once a minute to interrupt like we're all toddlers, that would have been great. Patients don't need things dumbed down all the time. These are specialists-- let them shine.
#jennyB I have had similar issues. I am 64 and have been dealing with chronic pain for decades. I was diagnosed with fibro, lyme disease, babesia, IBS, chronic interstital cystitis and severe joint and spine issues. My daughter was diagnosed with EDS as a teen. She told me it must be part of my issues as her dad is healthy. She was correct and I was diagnosed last year! At 12 I fell a few times on my left knee due to weak ankles. I had surgery at 19 due to a tear in the cartilage and infection in it. I always had neck and shoulder problems. In the 70s a chiropractor had me put my arms up and place my palms on the opposite shoulder (upper back). He pushed my elbows toward each other. They actually crossed past the point where there should have been a pop, then back. He said he never saw anything like it before. My joints and cervical/lumbar spine have many bone spurs, severe arthritis, and herniated discs. I had shoulder surgery for spurs that they thought was a torn rotator cuff. I was told I would need shoulder replacements before I'm 70!! I finally had my knee replaced in 2014.
If you want JennyB to see your comment, go to HER comment and tap on it. It will open it up and allow you to comment directly to her.
If you want to reply to this comment, tap on it to open it up.
my grandpa is 99 and was just dignose with Eds
What condition is he in does he have autism to if he does he will have to be in record books for age
Dr. Anderson of the muscle and joint clinic in San Rafael, CA, is very knowledgeable of EDS. I've only been seeing him for a month, but it has been extremely helpful in identifying instability, and releasing tight/compensating muscles before doing any strengthening.
Thanku for letting me know about this !!
Thanks!
what's the clinics name
@@alexismarroquin9137 The Muscle & Joint Clinic, San Rafael, CA
My physical therapist told me I’m hyper-mobile, I can kinda slide my hips in and out it doesn’t really hurt other than there’s a permeant stunging/sometimes burning around my hips. He also told me I have bulging disks in my lumbar and possible in my neck because my back burns a lot to. He gave me some exercises and he pokes my back and hips to test for pain and hypersensitivity. Sometimes he pokes and it just aches sometimes it stings a ton. The exercises seem to help some but I’m still in pain everyday and he didn’t give me any recommendations for how to work out as a hypermobile person, so I can’t tell which pains are a problem and which pains I should be concerned about. I also have been in pain for a long time and I feel like I can’t tell what’s normal and what isn’t anymore.
just a pain, period.
I think I need to be tested for this! I have almost all symptoms.
Thank you for doing this series.
Wow I always held my pencil wrong since preschool because my hand would hurt... never would sit still either because of always being uncomfortable. I have all these symptoms besides the hyper mobile joints. I do have a history of rolled ankles, knee instability, hip instability, shoulder instability, and constant back pain since I was a kid. I also have GI issues. I guess my skin is kinda stretchy... but isnt everyone's? Is there levels to this diagnosis? Like could I have symptoms to a lesser degree? I went to a lot of physical therapy but I think it just irritated things more. Ulnar nerves- numbness in my hands. I'm definitely very strong and my PTs don't think I have any obvious muscular weaknesses...yoga. I'm very very good at yoga. Like as a big muscular guy I blow instructors away who dont know me. But this back pain always flares up later and I eventually found it was better if I stopped going. I always was a serious cyclist but have given that up, as well as any activity that requires riding in the car because that makes my back so stiff. It will lock up on the way home many times. I am reduced to sitting on these special cushions now. I cannot sit without them. I get in a bad mood often and have pushed all of my support system away from me. People dont get it when I just dont feel like doing anything or talking to anyone. I have to make up excuses many times and I think it hurts people's feelings. I also often have trouble at my job. Staying motivated is so hard when some days I feel great and bite off a big task and the next day I can hardly walk. It's such a roller coaster.
I'm glad you stopped every person recommends me doing yoga but my knees feel really unstable
@@kaitlinbeste328 I'm all for being persistent and trying hard at any activity but in the end you really need to listen to your body. I'm in serious need of some new recreational activities as pretty much everything I enjoyed in the past now gives me pain issues. My hips and low back get so tight that it's incapacitating the day after doing something that felt great while I was doing it. I'm just tired of paying the price for trying to keep up with my friends and coworkers. The muscle spasms just arent worth it to me. It's sad that I cant enjoy a lot of things but when I'm hurting I think it makes me even more sad.
@@misterbulger exactly. There's something to pay for the joy and that's disheartening in itself. I completely get that
@@kaitlinbeste328 i have similar experiences, being very active w sports; baseball/ basketball. Also strength training for these sports using weights. What i noticed is that i hurt my shoulder throwing and it seemed like the muscles in my arm actu were over extended then recoiled the wrong way. All i felt at the time was the sensation of " throwing my arm out". Basically a lot of pain and it robbed me of a lot of strength. 20+ yes later since then ive lifted weights, and continued to play sports thinking i was fine but really i was still injured just the signals of pain were turned off. I been working on my shoulder since Jan 2020 and what i found it that everything is connected/ related to everything else. From tips or toes right up tonthe top of your head. For me when i had the twist in my arm everything else had to twist in order to compensate for the injury. Sprained ankles, falls.. etc over the years all add up if not corected...so i feel even the arm injury was not out of the blue but related to injuries years prior that " healed " on their own. Fascia i feel is the link that connects everything and it can become twisted like a rubber band then affect everything around it. So for me finally getting to a point where i can physically unwind/ untwist it starting from my arm ive had other trouble areas pop up. Slowly though even the new areas are getting better but it has been a slow process. Low dose muscles relaxers as opposed to medication that affects nervers helped, but with that there also has to be active manipulation of joints as to correct the twisted fascia and ligaments and muscles etc. Maybe a massage therapist would have a better grasp/ insight as to corrective therapy? So far ive been doing everything on my own because the drs ive seen have no clue.
Also i get the same thing as far as having "good" v " bad" days...it's kinda crazy because i AM in pretty good physical shape, but there is a link between physiology and psychology..or mind/ body...and i think that there may even be certain hormones that are produced when we are in pain that cause us to be in bad moods so to speak, there are certainly ones that produce good moods. But anyway theres a lot to write.. our bodies are so complex that each person could have their own volume of texts i believe!
This is a great discussion and more is definitely needed, hopefully a blend of the medical and naturopathic fields as opposed to being at odds is in the near future!
@@kaitlinbeste328 You’re only supposed to do Yin Yoga. I’ve been doing yoga all my life, but I’ve been in chronic back pain since age 14. I can still do the splits at 67.
I find this to be one of the most interesting syndromes out there fascinating and torturous for whoever has his ailment
interesting in its complexity of diagnosis and its widespread effects across multiple body systems... torturous is right tho... half the torture coming from a lack of knowledge in the medical field.
Thank you so much for making this discussion available freely online.
I know I have EDS , but I just found out last year. You would think as I’ve had pain for 30 years and seen multiple doctors and spent thousands of dollars to try and get well, that surly some doctor along the way would have diagnosed me. NO I had to through videos EVERY ONE in my family has some health problem that can be traced to EDS, it’s terrible to be thought of as a drug addict because you need pain pills to get by. Until COVID I was actually self treating myself with Tylenol # 1 from CANADA now I have to BEG the doctors for pain meds.
I hear you! I diagnosed myself.
If you were in the US the doctors here wouldn’t even care. I have had 3 compression fractures at once and they will prescribe you NOTHING! Because so many people have misused pain meds they just don’t prescribe them anymore. We that suffer daily from chronic pain just have to basically overdose on Tylenol and ibuprofen. I have had bleeding ulcers from the otc pain relievers.
I'm in Canada and have been told only PT can help. They do not give us any kind of narcotic here. I resort to taking Robaxacin and thc.
Same here (Netherlands)! Not diagnosed yet. In physical therapy for 20 years 😭 I am tired
I am almost 70 & just dx'd. Granddaughters exhibit many symptoms beyond hypermobility.
Thank you for this very informative presentation, very helpful 🙏.
Should elaborate on the muldowney protocol for physical therapy, prolotherapy before cervical fusion. Also Dr. Virtaj Singh in Seattle is working towards opening an eds clinic, years down the road but should be known to all to help him further his goal so we all can benefit
I'm 84!!!! My whole life. Weak ankles had to be wrapped as toddler so I could walk. Asthma and allergies at 10 and now have COPD. At 15, both knees dislocate playing football. Continue to dislocate thru life even with many surgeries. Develop IBS in 20s. Constant joint pain. Many anxiety and depression issues over the years. Carpal tunnel surgery. Open heart surgery in 70s. I can't believe the connections with connective tissue disease. These symptoms are shared by my children and my sister's children. WoW.
As long as I can remember I have bowed limps.Straight /flat neck..Flat feet that clubbed total foot reconstruction surgery 4 years ago. At 52 I am fighting IIH and TOS and disabled.I am my very own Bobblehead..
My 2 kids and i were diagnosed with hEDS last yr. I also have ADHD, IBS, GERD, gastritis, hernia, POTS, MCAS, fibromyalgia, mild regurgitation in my mitra valve and tricuspid valve. I have also torn both my ACLS. My son was also just diagnosed with EoE. I am in movement therapy that teaches me to not hyperextend or hyperflex in every movement. My brain activates the wrong muscles on every movement.
I've always questioned the FM diagnosis in EDS because FM literally translates as 'pain in the meat', pretty much - and doesn't EDS involve pain in the meat?
@@SKOLAHapparently eds pain shouldn't be when not in motion where fybromyalgia is constant so heds triggers it threw central sensitisation
I also have had exercise related hives since I was in my early 30's
IBS, CFS, Fibromyalgia diagnosis.
Glaucoma.. and my veins are bulging in areas. .
I just can not wrap my head around the doctors missing this for so long.
Me to I have all those diagnosis just lost my mum to severe ms it comes Dr m my grandfather s side maternal u can trace it back to 1825.albeit my grandad said we all have slack joints and now found out we all have Asperger's add have you found anything for the pain ime 43 now son's just diagnosed Asperger's add not quite as hypermobile as me
Casa Colina In Pomona, CA has a great physical therapist that specializes in patients with EDS. Dr. John Fagan has a office there as well. He specializes is EDS patients. I give them a 10/10 5 star rating 👍🏼
Yes! Dr. John Fagan also has an office in Rancho Cucamonga, CA. I had my first appt yesterday. The staff was wonderful!
Could you ask him if he would move to North Carolina?
Great discussion. Unfortunately getting a dx beyond Fibromyalgia is darn near impossible in today's patient care environment. I have been to a great pain clinic. I was diagnosed at thirty by a great Rheumatologist for hypermobility and then assigned FMS as my dx. It is wrong, but I work with what I have. Chronic pain will be a constant problem and managing all of the system issues is almost a fulltime job.
At 62 it is good to find out Yoga is bad because that has been my focus lately.
Strength training with weights in a very controlled manner seemed best for me.
Wishing everyone luck on the journey to wellness. Keep trying, keep living, and stay positive.
You can do Yin Yoga!!
I have hypermobile EDS and have tried a number of fitness classes to find out Pilates slowed down with a breath out and stabilization of joints before each move to be the best … controlled strength training like you said.
I have a marfanoid syndrome and a rare mutation for cEDS and other overlapping syndromes, was diagnosed age 55 after i did my own researchs, my son shares the marfanoid syndrome, this all sucks, there are no knowledgable docs for us here in Germany
Haben Sie die Diagnose in Deutschland erhalten? Wenn ja könnten Sie bitte schreiben bei wem?
It's painful and is generally NOT treated in my 30+ years of experience in the EDS world. I'm concerned about my spine again. It's hurting in a new spot. Making moving difficult. Has my permanent fracture worsened? How did I even fracture my spine while bedbound for a decade? Don't have EDS? Be grateful. Be grateful. Woke up in pain aged 11, it hasn't stopped since, my healing is awful - surgery will never be safe for me (that's scary)...Did you just see a piece about how a group believe they may have found the HEDS gene? TNXB is finally being spoken about more.
The autism gene must be the same
I recommend Casa Colina Rehabilitation Hospital. The PT department has EDS trained professionals. I am very please with their care and highly recommend Casa Colina Rehabilitación Hospital, Pomona, California
I was recently diagnosed at age 72 Y/O with EDS by Dr Newman, rheumatologist at Eisenhower Medical Center.
I had received PT at Casa Colina Rehabilitación Hospital after Hip replacement and shoulders surgery.
My physiotherapist diagnosed me with hEDS, she's a researcher and specialises in EDS. But she doesn't have the authority to formalise that diagnosis, that falls to my GP. My GP on the other hand doesn't belive in EDS ME/CFS, Fibromyalgia and so on. Basically she'll give me anti depressants and paracetamol to solve all my health issues. I've had joint pain, IBS, heart and blood pressure issues, difficulty breathing (asthma diagnosis but the meda don't work), and a myriad of other issues including hupermobile joints which cause instability in my ankles and hips. Which in turn make it difficult for me to walk. I've fallen over many times due to rolled/twisted ankle, locked knee or instable hips. Doctors only ask how much I've been drinking. I don't. I never have. The only thing I haven't experienced is dislocation.
I have been formally diagnosed with ME/CFS and in my experience ME and EDS seem to go hand in hand in the same way ASD and ADHD does. The majority of ME patients have EDS as well. And Fibromyalgia, POTS and so on.
I've always wondered about my ME diagnosis since I don't feel like I fit the criteria, yet I do have PEM and many of the associated symptoms. But I also have endometriosis so it's hard to know which is which. Or is my endometriosis just a part of EDS?
Unfortunately for me, none of the doctors I've been to seem to take anything seriously. I'm 44, I haven't been able to work due to the fatigue and pain in many years now. I even have a wheelchair, but no disability since my doctors don't take any of my symptoms seriously. The level of care is different in various parts of the world.
Thank you for a very informative seminar.
I have Buschke-Ollendorff Syndrome and many of my joints are hyper mobile. I have also been found to have the COL2A gene. My defective collagen from my Buschke-Ollendorff Syndrome seems to overlap EDS in many aspects. I have spinal stenosis and had my first spinal fusion when I was 30 years old. Even though I have several hyper mobile joints, I have struggled with not being flexible and having zero athletic ability, I have hypotension and temperature dysregulation which has been attributed to my hypothyroidism. How do you differentiate symptoms for patients with other conditions?
In both My pregnancies I had my rib subluxation as I got further along. I also had a lot of fainting and heart episodes about half way through both the pregnancies. The rib pain was horrible! My first baby was breech.
Black Night, I also delivered a breech baby, also my first. My mother had 2 out of 3 breech
My left ribs started popping out with my second pregnancy and are permanently unstable now. Sometimes just breathing pops them out.
Pregnancy can also be a trigger for EDS because it loosens already unstable joints. My right hip used to get stuck popped out when I was pregnant and laid on my back. Thankfully that didn't stay after I had my kids, but unfortunately now a decade later the left hip is starting to go in and out.
Same here. The rib pain lasted months, also my baby was breech.
During my first pregnancy it always felt like my son's feet were hooked under my ribs and it would hurt so much. I wonder if it was a rib subluxation... he wasn't breached but I needed a c-section.
I had the same rib trouble with a very big baby!
I’m worried I have an undiagnosed condition or syndrome having to do with all my ligaments and or tendons. I’ve dislocated my shoulders 11 times. Had surgery on my left 10 years ago and surgery on my right a couple of weeks ago. There is a lot of grinding around my shoulder blades. I have instability on the left side of my jaw and I constantly pop my ears throughout the day. I have woken up with my jaw dislocated and needed to massage it back into place several times. I have been experiencing ringing in my ears more frequently and loudly lately. All this seemed to get worse after attempting unsuccessfully to scuba dive some years ago. I had orthodontic work done as a kid but now I need more. I was going to start on the TMJ path until I dislocated my shoulder again. There is a spot in my spine around my lower middle back that clicks/pops when I straighten my posture and has been getting more and more pronounced/uncomfortable over the years. My knees frequently lock or stiffen up on me and I have to self adjust in different ways to get them to pop and return to functional, and I have a strange ability to pop my ankles over and over. I need to get to the root of the problem rather than treat each symptom as they arise. Any thoughts or advice? I’m 34 years old.
I have been researching lipedema and EDS for several days, and I need medical help. Sure hope my PCP will be able to direct me for evaluation.
I'm dealing with a torn rotator cuff from painting my house. My niece was diagnosed with EDS and it never occurred to me I might have it even tho I've always been double jointed. We compared symptoms and now it makes sense. I just got used to all the weird physical symptoms I've experienced my whole life. Now I'm about to start physical therapy for my very painful shoulder and think maybe I should get a diagnosis before beginning it.
How is your shoulder are you sure it's not fybromyalgia pain from the heds
Is there any Dr's in Indiana? My daughter went to Cincinnati but she's 21 now. I also need to see a specialist too. I have all the symptoms 😔
I am 70 years old, live in Arkansas,….need anything else need to be said. All the symptoms, signs, still no diagnosis 😢. Warm water mild exercise really helped when I was younger but digestive problems..
15
APR
2019
When Lyme disease and Ehlers-Danlos syndrome overlap
ella steinbeck, ehlers-danlos and Lyme disease
by Ella Steinbeck
I have been absent. Not just absent from my regular activities or a couple of dinner parties but I have been absent from life.
I have something called Ehlers-Danlos Syndrome. It’s painful and horrible and since it affects collagen there is no part of my body that is off limits. If you have time to Google it, I suggest it.
It’s all very medical and interesting if you’re into that kind of thing. Very Dr. House-y. You’ll learn about connective tissue, mast cell activation disorder and POTS or dysautonomia. That will all sum up EDS in a very confusing package with a not-so-pretty bow.
I have written about it in the past in a column titled “Dealing with Ehlers-Danlos…or why hyper-mobility isn’t a cool cell phone plan and doing the splits is bad” in The Rockland County Times.
Lyme disease enters the picture
Two weeks ago, I found out that I have Lyme disease. Late Lyme. Chronic Lyme. This means it’s gone untreated and has settled into my body for many years. Another illness. How can this be?
I’m not exactly sure when I contracted Lyme or if I had multiple exposures. But I can safely say I either got it when I was 29 years old or when I was 6. I wish I was kidding. How is this possible?
Where should I start? This story is not exactly what I would call “linear.” Bear with me. I was (and am) having a ton of cognitive issues, depression, anxiety, and physical pain.
My memory had been getting progressively worse. I was having a hard time with word retrieval and getting appointments right. Brain fog is part of Ehlers-Danlos because we often times have autonomic dysfunction. (Depression, anxiety, and autonomic dysfunction are part of Lyme as well, but I didn’t know that yet.)
I’d look at the computer and not be able to recall names of who I needed to email. I would start with A’s and scroll through all of them, then the B’s and so on until I’d see something that jogged my memory.
Or, I’d put in a word and hope some old emails would pop up that connected to the person and email address that I was hoping to recall. I had a general feeling of confusion, like I was doing something wrong all the time.
Disorientation
It was very disorienting and hard to tell people about. I couldn’t think of the words to tell them even if I really wanted to. Every time I told a story, it was filled with “never mind “or “uhh, shoot, I can’t remember.”
I would fill in sentences with acceptable words but not the words I wanted to use. It was affecting me socially. I’d opt to keep my mouth shut and do a lot of smiling and nodding. I tried to limit my speech to simple interactions.
Why was I getting worse? Could it be Alzheimer’s? It’s possible. I was in a severe car accident when I was 22 years old. I had multiple serious injuries and a traumatic brain injury. I also had several other concussions in the past.
I knew I should probably have this looked into. I tried to get into a brain study for TBI and Alzheimer’s, but was not accepted. I couldn’t take it anymore. I felt like I was going crazy. I had to do something.
I decided to make an appointment at the Psychoneuroplasticity Center outside of Dallas TX in November of 2018. Why there? They take into account the whole person. They look at nutrition, do brain mapping, investigate the adrenal system and assess hormones. I felt this was my best shot at understanding whatever was going on inside my brain and body.
Lo and behold, I found out I qualified for Mensa and didn’t have Alzheimer’s disease. Yay!
Brain inflammation
I do have brain inflammation and some malabsorption issues. I have a bit of a learning disability or ophthalmological disturbance called convergence insufficiency. It’s addressed with behavioral optometry and can be rehabbed. I’ve been pretty successful with that actually. As an aside, I’m not sure you should qualify for Mensa if you didn’t even know your IQ was being tested.
My brain also has enough Delta waves. This is why marijuana doesn’t work for me and makes me depressed and paranoid. I’ve never smoked pot successfully. When I say “never,” I mean never. I can’t use medical marijuana and it won’t work even if you have “really-good-stuff-man.”
Right before I got my diagnostics back from the PNP Center, a doctor I saw for a pain treatment had a hunch. He said his wife (who was also a doctor) had Lyme.
Something about my story made him think I had Lyme. I immediately went for a test, assuming he was wrong. I mean, I was “classic EDS.” Ask anyone or anyone who knows about EDS-cognitive issues, joint pain, POTS and mast cell issues are all present in Ehlers-Danlos Syndrome. Turns out they also show up in Lyme. My weird allergies, interstitial cystitis, and migraines can all be EDS…or Lyme.
I hate that they want to Gatekeep on fusion surgery out of fear that someone wouldnt heal well. Come on, Sir, that train left the station. It really cant get worse only better. That is the reality when you are looking fir a fusion. Its your last ditch chance. Dont gatekeep that.
Before my fusion I had no quality of life
My kid had a 2 vessel cord, one of the markers of eds. He has it. Runs in family, nobody realizes it causes pain.
What is 2 vessel chord
For neck instability you need to find an experienced DOCTOR IN PROLOTHERAPY
@gail rocafort do you have any recommendations?
32:56 Dr Wilson in Ft Worth Texas has experience doing this kind of stuff.
What type of Dr is he? I'm in Tyler and come to DFW for pain management
@@chrystalhardy3877Shes a Neurosurgeon
Given how sensitive the GI system tends to be in people with EDS, can NSAIDs really be considered safe for long term use? Daily diclofenac made my guts bleed.
I like how everything is non narcotics all because people had to wreck it for ppl like us who suffer from pain by abusing them so glad I’m in Palliative care cause all these pain clinics don’t believe in pain medicine I have autosomal dominant osteogenesis imperfecta and autosomal recessive ehlers Danlos syndrome and caffey disease according to my genetic test results I didn’t start getting worse until March 2017 I’m now 30 years old
Dairy and berry and magnesium make me feel better. But there all expensive to keep up with.
I've been diagnosed with Classic EDS and I think my mother had it I'm positive my son has it and my daughter. I was diagnosed at the age of 61 years 9 months and I m waiting for nerve block injections
Nerve blocks didnt help me
If it hasn’t worked for one person doesn’t mean it will not work for you.
Goodluck
Good luck. I’ve just had nerve blocks today in my neck and shoulder. Hoping they help and that they relieve your pain too.🤞
Nerve blocks have never worked for me as I metabolize the drug to quickly ,am allergic to Cortisone and Local Anesthetic. One drug I did find that worked was Botox. I have relief for 3 months from my Collagenous Colitis and muscle spasms .
Wow and I thought my diagnosis was late in my middle to late 30's! 36ish....
I've been trying to figure out the type of EDS I have due to having children I can't see genetic doctor is there a clear way to figure out the type
Is there a known issue with a persons blood vessels bursting while trying to place needles in the vein for sedation? I’ve had multiple blow outs under this issue. I can’t find a Dr to even talk to about what needs to be done for me.
very disappointing none of the doctors speak about addressing nutritional deficiencies that contribute to symptoms
Any recommendations for a knowledgeable Dr in MO. My eds doctor retired, an the doctors I've seen are undoing all the progress made with my doctor. I've went from being a functional adult maintaining a household with kids and a disabled son (age13) who relies on me for bathing,changing,dressing,feeding,ect. to struggling with basic mobility. The reality of becoming unable to care for my son is devastating, knowing it's something that can prevented by following even half of the request my previous doctor made is beyond frustrating.
do what your previous doctor told you to do...
@@cherieatkinson441 yeah thatd be great!? Obviously it doesn't work like that..even with all the records of the prior doc sent over u can't expect another doctor to simply just do what other doc was doing. Instead they start from very begining repeating the same things my prior doc an I spent years going threw. First doc noted same as prior doc in my xrays and mri but knew nothing about eds and believed it doesnt cause pain,, 2nd doc an orthopedic doc reviewed my xrays and mri scans an sent me to ER for scans asap, turns out I had a collapsed right lung phnothorax the first doc missed, so the 2nd doc sent me fo another doc. Doc 3 also sent me to ER for scans after seeing my recent scans bc I had pneumonia on the left lung. 3rd Doc was upset bc these were both visible in the scans from over a month prior and each scan showed them getting progressively worse. He's now my primary doc thou unable to follow prior doc he at least doesn't ignore me.
Would steroids helps with muscle tone for patients? 🤔
My son shows signs of both eds and akylosing spondylitis is there any info on any connections?
As is related to adhd
The only thing that has helped me is LDN & and cannabis. The entire pharmacy they threw at me only made me sicker and miserable and depressed.
What is LDN
Second cannabis
@@heatherr1141 low dose naltrexone
@@heatherr1141 this explains it well ua-cam.com/video/z0p0ykSzy9o/v-deo.html
@@heatherr1141 low dose naltrexone
Is Marfans somehow related or connected to EDS?
Yes. They are kinda like cousins. Many of us with HEDS have Marfanoid Habitus - short torso, extra long legs, fingers and arms. I, for example, have the torso of someone who is 5'2, and the arms and legs of someone who is 5'10-5'11. It's really not uncommon with us.
Can you take collagen to help with this diagnosis
I don't think it would fix us or help massively cos we still won't make proteins properly. That said, if it's safe to take, why not take it?
My granddaughter has EDS, POTS, irritable bowel with constipation and autism with dylexia and dysgraphia. She has at age 11 had a spinal fracture we couldn't explain and her feet are turned inward (pigeon toes) despite ankle surgery. Is autism associated with EDS? Learning issues? Her sister also has EDS and had a ciari that had to be surgically treated. Is this common with EDS? Help!
I have a son with autism and they say there is a connection. Chiari malformation is definitely connected.
ADHD & dyslexia like symptoms are associated with EDS
...sounds like the symptoms come about because of the body being folded in on itself, due to lack of sufficient structural support. Our bodies have to resist the pull of gravity as well as dealing with day to day wear and tear, let alone being in an accident or falling etc. Despite the injuries that ee have to recover from our bodies and highly intelligent and are built to adapt to any condition, evidence is all around us...ppl walk w limps or mave decreases rom in some areas, maybe cannot "move" as fast as when younger and we chalk these instances up to old age, when in fact our bodies are designed to heal and function at high levels for many years past what is normally considered prime years.
Just a few thoughts as i enter year 45...recovering from frozen shoulder brought on from an injury in my 20s.
All the drugs you have mentioned , I am Allergic to.
Had a nerve block for an Ulnar nerve repositioning and have been having severe headaches and double vision. Could you please shed some light on my signs and symptoms .
I know to I have bad reactions to nerve blocks .. I have lots of cyst in my spine and the pain is horrible
I have spinal CFS leaks it's. As we as a hygroma so much problem think with spine leak in in all sections or my spine has cyst from arachnid to synovial as well as tarlov cyst . Leak in my spine starts at 3mm on the cervical down to t12 with the leak goes to 8mm down in the thoracic
Help me plz ... I have had organ failure so can not do insaids
Sounds like some mast cell stuff involved.
I had surgery on my elbow for cubital tunnel syndrome. It's symptoms are odd. Numbness in the pinkie finger and one side of the ring finger. I still need surgery on the left elbow.
NSAIDS breaks down collagen. Important to distinguish between tendonitis and tendonosis and especially not apply NSAIDS to the latter. Curcumin a better choice,
Absolutely!
curcumin the herb?
nsaid help my pain a little bit so thats a problem.
No to doNSAIDS causes organ faer or ruptures . I am proof ..
I have been “ allergic “ to NSAID. Is there any literature that I can show a MD so I will be believed.
What is Curcumin?
I tried LDN for two years, really gave several different doses a good long try and it did not do anything you say it will do at all unfortunately. I really need pain management and i have an appt this week. I just dont know what to do anymore.
But also I have been looking for the EDS checklist on the internet that Tiffany Lin mentions and cannot find one. I spent years focusing on proving I don't have fibromyalgia to my doctors.
one of doctors mentions 2 helpful plant supplements I havent heard of. Anyone know how to spell the names of the herbs?
Quercitin
Food grade diatomaceous earth might be good for EDS as it is rich in silica which is a building block for collagen.
That's stuff you need to handle with an N94 mask or better. Get that into your lungs and you've got silicosis. Good luck breathing then!
@@jellyfishattack Its rather easy to avoid breathing it in. That's like telling people not to use bleach because its toxic if ingested. Thanks for warning folks though.
All thanks to Dr Aba for curing me from EDS Am forever grateful ..
I have been to so many doctors all my life insurance companies at the top people were the problem they've known about this for a long time
im 62, my mother died delivering me of a hemorrhaged uterus.
My knees would dislocate starting around the first grade. No one had a clue.
After many subluxations, dislocations and injuries ive had 14 different surguries to repair damage, arthritis, and relieve pain.
Both knees, elbow, shoulders, wrists, hands, cervical and lumbar spine, even my keister. I always had it, so I've adjusted over the years. I often say that if it hit me all at once, the pain would make me want kill myself.
Worst thing is i gave it to my kids.
At least they know and take easy physically. I didn't find out til my mid 30s. I drove a oil tanker tractor trailer, a redimix cement truck and studied Krav Maga for many years. I should have been playing chess
ldn??
I stopped listening when NSAIDs were recommended. Things that damage collagen... and make me go, "Hmmm!" Nope.
Me too. Tiffany didn't seem well informed and she's from a pain clinic. Not very reassuring.
@@Rae-yv7md
In over 60 years, I've seen nothing at all of the medical industry to engender trust. EDS patients are dying after slow torture, in most cases. Cold, hellish facts.
I call my EDS a pain in my backside! Because it causes me excruciating pain! My Neurologist was the one who had diagnosed me, I also have Epilepsy. So I’m what I call myself to be is a Purple Zebra ( purple to represent Epilepsy and the Zebra to represent EDS). Collagen is like the mortar that holds our body together like mortar holds the brick on a house together. I play the keyboard 🎹 and it hurts me to hold a ink pen for a long time, I do better using a pencil with a rubber sleeve on it. I have problems with heavy perfume or cleaning supplies, candles. They take my breath away. I have EDS type two. I also suffer from Acid Reflux and Asthma. I take Famotidine for my stomach and ProAir for my asthma.
Try prolotherapy for cervical instability 1st
I have EDS classic and my immune system is so low. Any idea why?
I am the same, need to take vitamin d3, zinc. Malabsorption, perhaps.
Eds is an autoimmune disorder
@@tiffany8946 EDS is not an autoimmune disorder. It is a genetic disorder.
@@invincibel4007 I don't care what it is I just want to heal 😔
You may have to supplement with products that are methylated. That helped me. B-12 already methylated, I cannot convert. There is also a Dr Hauser out of Ft Meyers Florida who discusses the impact of the vagus nerve and cervical compression and its affects on the immune system. Compression of those nerves contributes to a lot of the problems associated with EDS-according to him. Watch his webinars. Lifestyle changes helped me, supplements, etc. I am about to do prolotherapy to beef up my ligaments in shoulder. So much to learn! I’m praying for everyone with chronic pain. It’s terrible. Also, bio identical hormone replacement and Kratom have helped a lot.
15:00-15:05 multiple organ involvement not really discussed qhen said we got through thus. Perhaps its coming.
*when
Walking can be great exercize if you do enough. Wear comfy shoes, go faster as you improve. It's a good way to avoid injury and strengthen the spine.
LDN?
OK low dose nexaltrexate(sp?)
LDN Low Dose of Naltrexone
LDNLow Dose of Naltrexone
If I had a penny for every issue I would be rich…
I quit taking the pain pills because the only thing that even touches the pain is muscle relaxers and gabbapentin
Everything is opposite for us it seems
I asked my doctor for naltrexone for my Eds and they said only a psychiatrist will prescribe it and only if I’m an alcoholic.
Didn't work for me, but look at functional medicine drs, Dr of Osteopathic (DO) medicine or naturopaths in your area to find someone who will do a trial with you.
Find another doctor. Unfortunately LDN is variable though. It didn't help me at all.
Look online, there are places to get it. I can't find my link rn but if you cant find it let me know and I will dig some more if you're still looking.
Doctors are afraid to prescribe any medications that actually work. The opiate crisis = War on Pain Patients
I find asking for a particular medication puts Dr's on either the 'G-d syndrome' of how dare you challenge my authority or you are a drug seeker as in war on drugs and drug addicts. Many do not want to prescribe certain medications regardless of their potential in treating pain all the while disregarding you have as much pain as you say. Back in 1990s the authority in genetics and EDS didn't believe EDS causes anything more than mild diffuse pain. My dx stated 'unexplained pain level'! and that there was a secondary dx not related to EDS-type unspecified (my dx in 1997?, not exactly sure of date but around then).
19:37
25:55
Chopsticks I can never use chopsticks Canadian born Chinese heritage 1963 I was born never got I can’t use chopsticks I don’t know how well I can use them I do know how but it hurts my fingers are like Craig ever since I was a child and I was never forced to use chopsticks thank goodness my parents somehow I understand I don’t understand I was the only one allowed not to use chopsticks and we had major major what do you call it... Functions Gális while we rented out the whole restaurants like in Toronto Ontario siren dragging the whole restaurant will be rent it out because of my grandfather for his birthday any functions like Chinese new years etc. etc. and we’re talking 10 course Chinese servings... And they’re always a traditional 10 course meals that I will technically be a roughly about five maybe four out of the 10 but if you eat them for over 50 years he just get really hungry like you’re starving yeah there’s a lot of healthy stuff but like wild mushrooms not never got into that stuff but the good stuff like the fish the lobster etc. etc.
Always wondered how it would be to be Asian and have chopstick difficulties- have enough with White and Aboriginal heritage. Needless to say I've given up on drumming and dancing.
“yoga is poison” is such a gross generalization I can’t believe they actually said that. everything we do is risky, everything can be made safer through conscious awareness of joint function. since I’ve learned about my body and how to practice safely, yoga has been infinitely beneficial when compared to the dozen shrugging doctors i’ve seen.
You left out "for Ehlers-danlos patients" !!!! How rude! It is poison to us! It's harmful to EHLERS-DANLOS PATIENTS!
Nah...yoga, pilates....words that make someone else feel good.
Weill Cornell is horrible at treating or coming up with long lasting cures for chronic pain syndromes eg Eds, fibromyalgia, complex regional pain syndrome, myofascial pain syndrome.
Very true
@@normafernandez5217 whats your situation ?
NO TO GABAPENTIN
All this sucks
You guys have no idea what yoga is. Come out of that barrel. If you only do passive strech, your doing yoga wrong.
Just a note to say that Wikipedia says that the most effective painkiller for EDS is Tramadol, especially for myalgia (muscle pain). Research Tramadol Hydrochloride Prolonged Release tablets - the Marol brand. There are many different brands but some brands are much less well formulated than others and so don’t work as effectively. Maximum dose is 400mg per day and this may be necessary. The Tramadol works best when taken with 400mg of Ibuprofen. Again, chose a reputable brand as some low quality ibuprofen brands are not very effective.
and ibuprofen is not recommended for 65 and up.
Fascinating . My husband calls it irritable boop syndrome (boop is my nickname) I was diagnosed with ibs after my first pregnancy when I was 21 same time I had a lower back injury from giving birth after being put on bed rest still no one can tell me what happened why it's still painful every day for 11 years now and then it eventually became managed and just became a sleu of other things
...one reason could be that after a while pain signals end up being " ignored" so that you can function normaly, although the injuries could still exist?
I am loving the nickname ‘Irritable boop syndrome’ 😂
Boops was a nickname I had when I was little.
🙂❤